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Sjogrens Topics => Living With Sjogren's => Topic started by: valene2009 on October 11, 2011, 04:28:01 PM

Title: how do they know Plaquenil slows the progression of sjogrens??
Post by: valene2009 on October 11, 2011, 04:28:01 PM
ok so my rheumy says Plaquenil slows the progression of sjogrens. are there studies to prove this and are they done on humans or lab rats??  just curious ... like most on here i need to find a new Rheumy... :((( she doesnt answer my questions or offer any help.thanks guys and gals.. :)
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Scottietottie on October 11, 2011, 04:47:32 PM
Hi  :)

I know that my blood tests looked a lot more normal after 2 years on Plaquenil and that my Schirmer's test also showed an improvement. My rheumy attributed both things to Plaquenil. If it wasn't disease modifying - why would they prescribe it?

Take care - Scottie  :)
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Sooki on October 11, 2011, 05:01:51 PM
I don't know the definitive answer to your question, but this is my take on disease progression.  When my rheumy says it has been observed to slow the progression of the disease, I think he means that it won't just get rid of the joint pain, it will lessen the inflammatory response so that numerous symptoms will decrease.  There aren't hard and fast measures to determine disease progression.  If your existing symptoms get worse and you get new ones, you can say your disease is progressing.  If your symptoms quiet down and you're not getting new ones, it seems like your disease progression is slowing down.  When I was first put on plaquenil, he didn't also give me other drugs right away because he thought that many of my symptoms might improve and he wanted to see if that was true before adding other drugs. (It was.)   Later on, when I started getting skin rashes from the sun, he said that sun exposure would increase disease progression, meaning I could expect more joint pain, fatigue, etc. as well as the skin rash, from any sun exposure I got (I covered up quick).  Does this make sense? 
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: valene2009 on October 11, 2011, 05:14:24 PM
thanks.. i just dont feel any better on it... have taken it over a year..my blood work was actually worse. lol. o well... thanks again
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Sooki on October 11, 2011, 05:16:39 PM
Sorry - here's my last post with paragraphs:

I don't know the definitive answer to your question, but this is my take on disease progression.  When my rheumy says it has been observed to slow the progression of the disease, I think he means that it won't just get rid of the joint pain, it will lessen the inflammatory response so that numerous symptoms will decrease.

There aren't hard and fast measures to determine disease progression.  If your existing symptoms get worse and you get new ones, you can say your disease is progressing.

If your symptoms quiet down and you're not getting new ones, it seems like your disease progression is slowing down.

When I was first put on plaquenil, he didn't also give me other drugs right away because he thought that many of my symptoms might improve and he wanted to see if that was true before adding other drugs. (It was.)

Late on, when I started getting skin rashes from sunlight, he said that sun exposure would increase disease progression, meaning I could expect more joint pain, fatigue, etc. as well as the skin rash, from any sun exposure I got (I covered up quick.). 

Does this make sense?  And it doesn't work for everybody.....
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: valene2009 on October 11, 2011, 05:26:52 PM
thanks for paragraphing for me.. Is that a word?  lol...
what else can we take besides plaquenil and methotrexate??
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Nancy60 on October 11, 2011, 05:44:37 PM
I went off plaquenil for awhile because of side effects (ear ringing) and got so much worse, I didn't realize how much it was actually doing for me.  I started back on it maybe 6 months later and am so thankful for it, You might not realize how it is helping you. 

I think Prednisone is used sometimes, but they prefer to use Methotrexate or Plaquenil because of all the bad long term effects of Prednisone.  Arent' they also using Rituxin sometimes with SJS?

Nancy
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: valene2009 on October 11, 2011, 06:08:31 PM
Nancy..thanks. do you mind telling me what side effects you had when you got off the plaquenli?  my main issues are ext dry eyes and then mouth.. i have sore shoulders but i dont even take aleve daily for that.. i am mostly bone dry everywhere and cant be in the heat and have trouble exercising cause i get so dehyrated and dont sweat anymore
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: ohiolady on October 12, 2011, 06:53:14 AM
Valene,

I see a rheumatologist at Cleveland Clinic and she told me Plaquenil would help with joint pain and it is used widely for Sjogrens but the studies do not show it helps with the dryness issues.  Now, I know others will say it has helped with their dryness and it may, but this is what I was told.  She did not say it slowed the progression.  She said it is an anti-inflammatory.

Anna

Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Sooki on October 12, 2011, 07:22:48 AM
When the plaquenil couldn't control all my symptoms (I started the skin rash and was dx'ed with Lupus as well as Sjogren's), the rheumy added CellCept to the mix at the lowest dose.  That has been really helpful.  I've started sweating again, lightly.  My dryness is slightly better.  The joint pain and sun reaction are much less.  Fatigue, hard to say, it comes and goes but maybe better.  I don't know if CellCept is used for Sjogren's alone, but I'm happy not to start down the methotrexate/biologics route until I have to.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 12, 2011, 07:32:46 AM
I've heard only positive things about Plaquenil and how it slows progression.....many have commented it has brought back some of their salivary gland and eye gland function.  My question is how early do you have to start it to get back some of what you've lost.  I'm not in a lot of pain now and I'm not fatigued to any point of extreme.  On dry days I want to start the drug but on better days I keep thinking I can hold off.  My Rheumy wants me to start it if I get any more joint pain....she doesn't push the fact of beginning plaquenil for dryness only.  Any comments on this please? :)
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Diane54 on October 12, 2011, 07:36:20 AM
Ohio Lady ............my Rheummy is at the CC also......are you at the main clinic or a suburban one?
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: 4Kids on October 12, 2011, 08:10:59 AM
My rheumy said there is no evidence to support that Plaquenil slows down progression, she said that is an old way of thinking. She also said there is no evidence to support it helps dryness but I argued that people here say it does. For the record she asked if I thought Restasis was really helping at all, did it really do anything for me, really? I answered if everythibg worked like Restasis I would be a very happy, normal person. I just started Plaquenil last week for hair loss. I really hope it works!
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: lolo1979 on October 12, 2011, 08:19:48 AM
There is at least one study that showed plaquenil helped dryness:

http://www.ncbi.nlm.nih.gov/pubmed/19433433

I can't stand these rheumatologists who offer us no hope of improvement and are "doom and gloom". If that's how your rheumy makes you feel, find a new one asap!!!  Also, do not let these rheumies downplay the significance of dryness. Dryness is a big deal. It interferes with the way we feel, our quality of life, etc.  These rheumies who say they will only give you DMARD's for joint pain --- why?? 

I told my rheumy yesterday that I do not want to stand idle and wait for my immune system to continue attacking my moisture glands until I am so miserable I can't stand it.  She agreed, and is willing to be my partner in treatment and do her best to help me get better.  That is what a good rheumy does.  I can tell you I didn't start with a good rheumy. My last one told me there was nothing he could do for me, that immunosuppressents wouldn't help, and to never get pregnant again.  Oh thanks, why don't I just go ahead and check out then? Needless to say, I found my new doc and couldn't be happier. 
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: ohiolady on October 12, 2011, 10:25:57 AM
Diane,

I go to CCF at Lorain.  I avoid the main campus.

Anna
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: mshistory on October 12, 2011, 12:16:50 PM
I don't know if it slows the progression, but my latest blood work did show my SED rate back in the normal range (it was high pre-treatment) so I think it's doing something positive  ;)
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: irish on October 12, 2011, 09:07:57 PM
As far as the plaquenil slowing the autoimmune attack on our body goes, it is a very individual response that I can see.

If your blood work is improved AND your symptoms are better it is probably helping you. If you blood work isn't better and your symptoms are improved it is probably helping you. If your blood work isn't better AND your symptoms are not improved it probably isn't helping you.

Remember that blood work doesn't have to be positive to have symptoms AND people can have positive blood work for years with out having symptoms til later on.

Also,if you have been on the plaquenil for many months without any improvement it is probably time to get out the big guns. They use the Imuran, cellcept and methotrexate the most from what is mentioned on this site. Yes, the Rituxin is used, but I don't know just exactly what the criteria are to use that drug. I know that it helps to get rid of the cells that are attacking us and sort of get us back to normal. Some people are bloody miserable on it and others not so much.

I will say again that it is an individual reaction to the medications and even if we have bad luck with one there are more out there that we can try. I would never take the strong medications for the dryness---at least at this point in my disease process.

It is recommended that if we are having central nervous system symptoms we should start them as soon as possible. None of us want to start these medications, but if the time comes when we need them there really isn't much choice if we choose to have a better life style. Good luck to all of you. Irish ;D
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 18, 2011, 05:28:21 AM
I wonder how many of these Rhmy's are up to date to even know?

I've seen tons of doctors over the years who really didn't do anything or really know what to do. Though, my basic bloodwork would come back normal.

I doubt many Rhmy's are up to date on treatments and studies that are being done.

I'm hoping since my bloodwork has always been good. That I have a good response with medication.

I'm thinking about maybe doing an ultrasound of the salivary glands to see what that looks like.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 18, 2011, 06:46:41 AM
Irish,
What are some of the CNS symptoms we should be aware of?  I get the different nervous systems mixed up with their respective symptoms.  thanx
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: irish on October 18, 2011, 12:07:23 PM
You know what, Gold>? I don't think that anybody can say for sure just what CNS symptoms go with what disease. If you look up lupus you will see a list of issues, etc. I think that the CNS issues are pretty much up for grabs.

I know that the cognitive issues, poor concentration, depression, numbness in extremities, seizures, headaches, insomnia,hallucinations are pretty much the common ones that I can pull out of the air right now. The depression can be from the chemicals in the brain or, it is my personal opinion that a lot of the depression-cognition-concentration issues can be related to the inflammatory effect on the brain and/or tissues in the spinal cord.

I think that we must be proactive about these issues because in the long run these issues can be the ones that will more profoundly effect our overall health than we would have originally have imagined. The dry eye/mouth issues are many times the things that disrupt our life making us so miserable that we tend to ignore some of the CNS symptoms that are slowly getting worse.

I also am beginning to think that we have so many organs and functions in the body that can be affected that we are just overwhelmed trying to keep up. This also overwhelms the doctors and it is only when the CNS issues become huge do we finally get a referral to a neurologist.

By then we may have some issues that just don't respond to treatment very well. Sooo, my feeling is see nuerologist sooner than later. Irish ;D
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 19, 2011, 07:04:16 AM
you are right Irish....when I mentioned to my doc after he referred me to a rheumatologist..."can we get a neurologist on my team"?  He replied, "no, let's not involve too many doctors right now"!!!  Now what's that saying?  Too many docs may have different opinions than he has!  or he may lose control of my visits to him if I have to see other docs for special issues??  I'm going to talk to my rheumy in Dec. about getting a Neuro on board.  She seems more like a "team player"!!
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Virgi on October 21, 2011, 10:30:40 PM
Great question!! I am on Methotrexate and have been reading and searching on how it would help progression? ... Im 36 was diagnosed this year inMarch ... but I feel its been an ETERNITY of side effects and I feel worse than before I was diagnosed... so is this medication worth taking? how can we know Plaquenil or MTX or any of the other medications do work?
its very frustrating.. i needed to vent!!!
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 22, 2011, 03:41:12 AM
Great question!! I am on Methotrexate and have been reading and searching on how it would help progression? ... Im 36 was diagnosed this year inMarch ... but I feel its been an ETERNITY of side effects and I feel worse than before I was diagnosed... so is this medication worth taking? how can we know Plaquenil or MTX or any of the other medications do work?
its very frustrating.. i needed to vent!!!

What are the side effects?
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gurs on October 22, 2011, 03:59:49 AM
Cheez, seems this plaquenil debate just keeps going on and on ..on this board.  Who really knows what it does etc. Its been used for years with mostly milder side effects than the other DMARDS and other agents.

I was on plaquenil for years and years, stopped it because I thought it wasnt doing anything..3 months after that, all my hair in back fell out, and then my CNS symptoms all appeared...(alot of MS type symptoms) as well as everything else just got worse, like joint pain, dryness, fatigue, etc.

I believe it does slow down the progression of the disease, but alot of us need additional meds added to get any other relief of pain, etc.

Gursie
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: LizPetillo on October 22, 2011, 05:21:14 AM
My rheumy said there is no evidence to support that Plaquenil slows down progression, she said that is an old way of thinking.
Bah humbug.  It sure does slow it down.  When on it, everything is better and inflammation is down.   When off it, everything is worse and inflammation is much higher.  Inflammation = possible damage afterwards.  Therefore ... simple math ... less inflammation means less damage.

It may or may not slow it down drastically... but it DOES slow it down.

Bad Rheumy .. bad bad (*swats Rheumy on the nose with a newspaper).
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Carebear on October 22, 2011, 08:48:20 AM
Virgi,

Would you consider injectable Methotrexate?  My rheumy says this option offers far fewer and less severe side effects. And the dosage is more consistent because with the oral medication there is no way to tell exactly how much is being metabolized by the body.

As for the original question about Plaquenil's effectiveness...bottom line is that it works for many, many people who suffer from a variety of autoimmune diseases.  The only way you'll know for certain if it improves your quality of life, is trying it for yourself.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 23, 2011, 04:39:49 AM
Virgi,

Would you consider injectable Methotrexate?  My rheumy says this option offers far fewer and less severe side effects. And the dosage is more consistent because with the oral medication there is no way to tell exactly how much is being metabolized by the body.

As for the original question about Plaquenil's effectiveness...bottom line is that it works for many, many people who suffer from a variety of autoimmune diseases.  The only way you'll know for certain if it improves your quality of life, is trying it for yourself.

Plaquenil takes like 6 months to start working if it is going to work, correct?

I'll have to look to see if there is a patient assistance for injectable methotrexate.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gurs on October 23, 2011, 04:46:10 AM
I noticed a difference in one day...started it at night, next morning I felt alot better...less drying, less fatigue, and less joint pain.
But, that was my experience...I think the say to give it a full year for the best effect. Each person is so different.

Doctors (not my rheumy) also told me this was impossible...but hello, I know my body!


Gursie
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 23, 2011, 04:51:31 AM
I noticed a difference in one day...started it at night, next morning I felt alot better...less drying, less fatigue, and less joint pain.
But, that was my experience...I think the say to give it a full year for the best effect. Each person is so different.

Doctors (not my rheumy) also told me this was impossible...but hello, I know my body!


Gursie

Was that the Plaqueil or the Methotrexate? I've also read how docs like to do at least two medications at the same time instead of just one. From the research, looks like people tend to have better results when taking two meds instead of just one.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Meleke on October 23, 2011, 07:11:22 AM
Ohio lady  and Diane    I'm going to be going to cc Wednesday  the Euclid ave  c building.   i have had many bad experiences with some Dr's at osu.  there's a Dr Dasilva i'm going to see  i know that Gretter is the sjs Dr but do u know if this Dasilva is a good one too?  would like to know I'm not going to waste my time. i had an osu doc tell me i have had multiple mini strokes n  2 big ones n set to have another at any time yet  did nothing  simply said call me if u have anymore problem.  I'm hoping to get someone who will help and listen..  Please if u know   let me know..   Thanks so much for your help as i live 2 hrs away from the Cleveland Clinic  and trips really bother me as i have other issues too..
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gurs on October 23, 2011, 09:51:48 AM
Jasonsmith,

That was the plaquenil...I would never recommended STARTING new meds at the same time, how would you know which ones are causing any side effects, working, etc?  Alot of SS and autoimmune people are on at least 2 medications...very common to be on plaquenil and methotrexate same time. Would advise to start with the plaquenil and go from there. Its possible you wont need additonal medications.

Gursie
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: engy on October 23, 2011, 12:23:43 PM
All I can say is that I was dead-set against plaquenil when offered it from my first rheumy. I regret that because I got so bad I was bed bound. A year later & another rhuemy I tried it. She asked me to give it 3 months. I did & it has helped me give my life back.

I also go to Cleveland Clinic but I do not go to the main campus. They are good for diagnosis but not for follow up.

I went to see my integrative doctor & she doesn't have a problem with it either but does with the other drugs used to treat Sjogrens. ( I don't so people, use what you need) I didn't have any problems tolerating it but my doctor treated me for it with her allergy ellimination.

I am now back to work full time, been on plaquenil for 7 months now and feel even better this month than last.

I did forget to take my second dose yesterday. How did I remember? I was watching a movie & eyes & mouth were miserably dry & my hands were aching so bad I asked my hubby to massage them. As he was he said, you haven't asked me to do this in months! I got my pill container & sure enough, I forgot.

It took months to get relief but totally worth it & couldn't believe 1 dose make a difference but for me it does.

I feel very bad for those who do not tolerate or cannot take this drug. I know how horrible I was before & how much better I feel now & for me, it's more than worth it.

Carie
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 23, 2011, 12:41:16 PM
Jasonsmith,

That was the plaquenil...I would never recommended STARTING new meds at the same time, how would you know which ones are causing any side effects, working, etc?  Alot of SS and autoimmune people are on at least 2 medications...very common to be on plaquenil and methotrexate same time. Would advise to start with the plaquenil and go from there. Its possible you wont need additonal medications.

Gursie

I have a recent dryness just start. Mouth, throat, and sinuses. Haven't been able to sleep. So, hopefully since it just recently got bad, maybe there's still time to reverse it. So, I'd want to try and reverse as soon a possible. Plaqeunil can take 6-12 months if it even does anything at all. I wouldn't want to risk waiting that long when I could add something right now to it that works faster like the Methotrexate or something else.

I probably wouldn't mind also adding in anti-virals just incase any viruses are roming around causing problems that should be dormant. As I think my problems started from a viral infection. I've read if these viruses are messing around, it can affect the immune system and cause autoimmune. I've also read that autoimmune could allow these dormant viruses to activate and cause problems.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: engy on October 23, 2011, 12:49:35 PM
I agree with Gursie on trying 1 med at a time. However, you should talk it over with your doctor.

I also don't think there is a "quick fix" if that's what you are looking for. (anyone feel free to correct me).

I am not back 100% and don't think I ever will be able to do the things I used to (run marathons, week-long hike/bike/ camp, yard work, ect.) but I am working full time & can do 1 thing on the weekends. I am working my way up to walking & biking a short while but I'm so happy & blessed with what I do have back.

Good Luck with your journey to feeling better!
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gurs on October 23, 2011, 12:51:42 PM
Your doctor would be the one who decides what treatment plan might work best for you.....Metho can lower the immune system immensly, so if you have a virus, might get even worse. When I started metho, a few weeks later I developed a severe fungal infection in my esophagus so I could no longer take it..If there is any sign of an active  infection, sure doc wouldnt even consider it....

Relax a bit....talk with your doc about your best options and go from there. I know all this is stressful, but the stress is prob just going to
aggravate whatever is going on with you...one day at at time!

Gursie
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Carebear on October 23, 2011, 01:36:32 PM
Jason,

I mentioned in an early post to you that Methotrexate is also a DMARD like Plaquenil, and it takes anywhere from 6 weeks to 3 threes to start to take effect.   So there is no quick fix.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 23, 2011, 01:43:41 PM
I wasn't referring to a quick fix. Plaquenil takes time to start working if it is going to work. Which could be a year away, and it might not even do anything. I was interested in also taking something else that starts working faster than Plaqeunil so the healing process would start faster than with Plaquenil alone. I'll talk it over with my doc. I was just using Methotrexate as a reference as there are several other options out there. I really wouldn't want to wait a year for the healing to maybe start as salivary damage can become permanent.

As I'm hoping the recent bout of dryness is reversable or something since it just became a problem. It's pretty much a non-stop irritation. After the dryness started, there were some nights I didn't sleep at all. And what nights I did get some sleep, it was only 4 hours if that. But I was still waking up every 30 minutes or every hour having to spray salin up my nose and drink something. Which really didn't do much. I'm hoping it's just a fluke or a flare up or something. As I do get weird things that come and go. And that was with sleep aids. Looks like I'll have to be on some sleep aid while this dryness is present. Ambien is the cheapest, but all it does is knock you out. It doesn't help you stay asleep like the more expensive stuff. Plus you can't take it every day or you build up a tolerance.

From what I've read. Some believe autoimmune and active virals that should be dormant go hand in hand. So, it's possible people with autoimmune also have unsupressed viral activity as well.

I also take immune support supplements. It sounds like that is reversed. But I had read taking immune support supplements can help the immune system work correctly which could also help with the autoimmune.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gurs on October 23, 2011, 01:57:07 PM
Careful of the sleep aids and other meds......they can cause severe dryness...Even tylenol and motrin dry me out. I have to be extremely careful, esp around bedtime...also, alot of natural supplements can be drying, as I have found out the hard way.

Gursie
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 23, 2011, 02:04:00 PM
Jason,

I mentioned in an early post to you that Methotrexate is also a DMARD like Plaquenil, and it takes anywhere from 6 weeks to 3 threes to start to take effect.   So there is no quick fix.

I'm not referring to a quick fix. I'm referring to treatment that starts working sooner than others. Plaquenil takes a long time and could even take a year, and it might not even do anything. There are other treatment options that start working faster than Plaquenil. Though they are usually taken together. Though some may start one then later add the other.

Yes,  I had read Methotrexate starts working in 3-6 weeks. Though, that is alot better than 6-12 months like with Plaquenil. But I'm just using Methotrexate as an example. My doc may not even recommend it. But I assume he'll want to do Plaquenil as that seems the normal starting point. But I'll ask about adding something else in with it that starts working faster. As I don't want to wait a year just to see if one med will work as this recent bout of dryness is significantly affecting my ability to sleep. Good thing I'm not working as I don't think I'd be able to function well not getting any sleep.

Though obviously everyone is different and these are just estimates. As some it takes longer than others. And some don't ever notice a benefit from some of these meds.

The last time I had something really affect my sleep. I had a cathetor inserted in my bladder for a test. Well later on after the pain med jelly wore off. It was non stop bladder pain and bad pain urinating. Which isn't good if you have frequent urination. Plus with the bladder pain, it made you want to pee all the time. I think I went 5 days with no sleep and thought I was losing my mind as I could barely function with no sleep and non stop bladder pain. Luckily the non stop pain finally cleared up after like a week. I called the urologist's office every day for something, and they would'nt do anything. One of the meds they had previously given me for frequent urination caused me to not be able to pee on like the 4th day and I had blood in my urine. So, the emergency room gave me some pain pills. And those pain pills was the first I was able to get a little bit of sleep. I saw the urologist the next day, and they wouldn't give me anything like more pain pills or any sleep aids.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 23, 2011, 02:10:35 PM
Careful of the sleep aids and other meds......they can cause severe dryness...Even tylenol and motrin dry me out. I have to be extremely careful, esp around bedtime...also, alot of natural supplements can be drying, as I have found out the hard way.

Gursie

Yeah, I know about the OTC sleep aids which can cause dryness due to the antihistamine. Though I'm taking Ambien right now. Not sure if that causes alot of dryness, but don't have much choice. I also have some Rozerem. Rozerem doesn't work as good as Ambien. As Ambien knocks you out. But you can't take Ambien every day. So, I may look at the Rozerem on my off days. I've got a little bit left from an old script. I've taken Ambien in the past and didn't notice any dryness. So not sure if that would be given me any extra dryness right now.

The only things in the past I've notice given me dryness was meds for diarrhea and for frequent urination.

Do you know what supplements can be drying? Is there a list of supplements that can cause dryness? Or is it just something you've taken and figured it increased your dryness?
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: irish on October 23, 2011, 09:39:45 PM
Jason, The plaquenil needs to be tried before the methotrexate. Most docs will not even start the methotrexate unless they have done a trial of the plaquenil.

I was just offered Imuran by my immunologist as he has told me he thinks that the plaquenil is not strong enough for me. I told him that I wanted to give it a try. I am glad I did. I started to notice some slight changes in the swelling in my sinuses and throat that first week.

I am no longer hanging over the sink half the night feeling like I am choking to death. I still have all the mucus issues, but it feels like it is draining a lot better. Also, my throat doesn't feel like it is trying to close up on me.Now I consider that to be an improvement.

I still maintain that you spend way too much time analyzing stuff. You will drive yourself crazy trying to figure things out. Most things don't have one perfect answer. ;DJust relax and work with your doctor. Good luck. Irish
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Meld256 on October 23, 2011, 10:03:18 PM
It seems, in my humble opinion, that we have gone over this question quite a bit.   The answer seems to be that we might not really know who Plaquenil will help and how much, or what side effects will happen until someone tries it.  As with everything, we are all different.

Jason, I know it can be frustrating to have symptoms and not feel the symptoms are being treated. Sometimes we need to try several meds to find the right ones for us. I hope that you are able to find a doctor who will listen to all your concerns and help you begin to feel better.

Irish, I'm really glad you are having some improvement with all the throat and mucus issues.  ;)
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 24, 2011, 03:01:27 AM
Jason, The plaquenil needs to be tried before the methotrexate. Most docs will not even start the methotrexate unless they have done a trial of the plaquenil.

I was just offered Imuran by my immunologist as he has told me he thinks that the plaquenil is not strong enough for me. I told him that I wanted to give it a try. I am glad I did. I started to notice some slight changes in the swelling in my sinuses and throat that first week.

I am no longer hanging over the sink half the night feeling like I am choking to death. I still have all the mucus issues, but it feels like it is draining a lot better. Also, my throat doesn't feel like it is trying to close up on me.Now I consider that to be an improvement.

I still maintain that you spend way too much time analyzing stuff. You will drive yourself crazy trying to figure things out. Most things don't have one perfect answer. ;DJust relax and work with your doctor. Good luck. Irish

I'm at the end of my ropes with this recent thing of dryness. But salivary gland damage can be permenent, so you want to act quick to stop the inflammation and not wait around. Some docs from what I've read looks like they wait to see how bad their patients symptoms get before they start treatment. So, you have to take your health into your hands.

It's been 15 years since my problems started. I've seen a ton of doctors over the years who didn't do anything. Some told me I was too young to have these problems. So, time is running out as it is progressivly getting worse every year as I've got another 40+ years to deal with it. My problems started when I was 15. Alot on this board probably started in their 40's or 50's. So, by the time most's here illnesses started, I would have been dealing with it for 35 years already.

Theres alot here on the board that can still work. After 2 years I was already disabled. But I was just lucky to find a job I could do for a while in order to earn enough credits for disability. Right now I'm able to live cheap in my living arrangement. Though that could end at any time. Which means if I had to get an apartment or something. I'd have no money to even be able to buy shoes. I'd be lucky to have electricity. And I'd have no cable and probably no internet as half my income would go just to pay rent alone. Which means I'd have no money for treatment and no money to see the doctor. My states medicaid doesn't have a section for poor disabled if you get more per month than SSI. You have to be a kid or have a kid to get on state medicaid. Though maybe that will change in a few years.

The main problem now is the dryness as I'm unable to sleep much, plus a non stop irritation. I hope it goes away. But if it keeps getting worse. I wouldn't be able to handle 100% dryness. I hope this doc is willing to do something as I'm spending hundreds of dollars out of pocket just for the first appointment.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 24, 2011, 07:06:35 AM
Jason,
The more nervous you are about the situation, the dryer your mouth will be.  It's part of the parasympathetic autonomic nervous system "fight or flight" response.  As soon as I calmed down about my diagnosis, the better my dry mouth became.  It's not totally moist but it's not near as dry and if I relax when I go to bed I don't wake up with as much of a sore throat and mouth.  Perhaps your docs can give you something to take the edge off.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Meld256 on October 24, 2011, 02:42:23 PM
Jason,

I hope that when you see your doctor, you can have a list of all the symptoms that worry you, and tell them how it's affecting you.  You seem very anxious, and that's understandable. Many of us need help with our anxiety, whether its meds or counseling.  Once we are able to calm down, our symptoms can improve.   When we stress out, it makes it all worse.

Maybe some other members about your age will post. I feel badly that you feel time is running out for you. In my personal opinion, it never seems too late to get treatment. (although you may disagree, and that's ok) :)
By the time you are years older, we may have much better treatments; who knows?  I hope that's the case.
Take care,
Melinda
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 25, 2011, 08:52:35 AM
Jason,
The more nervous you are about the situation, the dryer your mouth will be.  It's part of the parasympathetic autonomic nervous system "fight or flight" response.  As soon as I calmed down about my diagnosis, the better my dry mouth became.  It's not totally moist but it's not near as dry and if I relax when I go to bed I don't wake up with as much of a sore throat and mouth.  Perhaps your docs can give you something to take the edge off.

I've had anxiety for 15 years. So, I doubt it all of a sudden became a problem with the dryness. I've had to deal with going to school and work with a chronic diarrhea/gas problem that I had to worry about all day long having an accident and embarrassing myself. I don't work anymore. So, some of that anxiety is lessened with regards to the diarrhea.

Some mention I analyze too much. I don't think I do it enough. I had sinus surgery years ago where they cut out some air pockets in the bone in my sinuses and cut out some turbinates. Later on a different ENT mentioned how dry my sinuses are and didn't recommend anymore surgery based on what has already been done. I later learned when you have turbinates cut out, you run the risk of developing empty nose syndrome. Which is NOT good. Guess what, the doc that did the surgey didn't tell me anything about any long term risks from the surgery like with empty nose syndrome. These are kinds of problems people run into because they don't fully understand the risks or what all is involved. Since the doctors aren't going to tell me, I have to find out for myself.

I saw a Rhmy who gave me some Prednisone to try. He gave it to me like candy. Didn't tell me anything about it other than that is what he usually gives to people with Lupus like stuff. I didn't notice anything so he gave up. But if it worked, I guess he would have kept giving me refills even though he didn't tell me any risks. I had to figure out the risks on my own.

So, yes for my health and benefit, I have to look into stuff myself as no one else will. Example, how many people out there are blind because their docs didn't tell them the risks of Plaquenil toxicity? There are tons.

The biggest side effect of Anxiety meds is dry mouth. So, I don't see the benefit of taking anxiety meds to help reduce anxiety on the theory that the anxiety could be adding to the dryness when the treatment itself probably will cause dryness.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: irish on October 25, 2011, 09:52:07 PM
Jason, I said it before and I will say it again, you sit and agonize over everything you read. If you had empty nose syndrome you would know it. You don't have it and the surgery is long past so why even talk about it.

Please quit doing this to yourself and relax. You almost sound like you are crusing the internet trying to find out more bad things to worry about. Life is what you make it. Agonizing over the past, present and future is totally an exercise in futility. There are some things that we just have to put in the hands of a higher power and go on with our lives.

As was said earlier, it seems that you get stuck on a subject and can't give it up. Many of these things don't have a final or perfect answer and talking about them day in and day out won't change things. Irish
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 26, 2011, 06:03:42 AM
Jason, I said it before and I will say it again, you sit and agonize over everything you read. If you had empty nose syndrome you would know it. You don't have it and the surgery is long past so why even talk about it.

Please quit doing this to yourself and relax. You almost sound like you are crusing the internet trying to find out more bad things to worry about. Life is what you make it. Agonizing over the past, present and future is totally an exercise in futility. There are some things that we just have to put in the hands of a higher power and go on with our lives.

As was said earlier, it seems that you get stuck on a subject and can't give it up. Many of these things don't have a final or perfect answer and talking about them day in and day out won't change things. Irish

I've been seeing doctors for over 10 years now. Everytime it's like hitting a brick wall as the doctors don't want to do anything. So, my appointments are usually always a first or second time appointment as the doctors give up after the first visit. My problems progressivly get worse every year. They started 15 years ago, so it is pretty advanced. I was pretty much disabled before I even started working. So, I haven't been able to have a career or family because of it. So, obviously I'd like to get better. Since the docs don't do anything, I've had to take an active approach. I decided years ago I didn't like to just sit around getting worse every year waiting on a doc to finally do something. I'm still fairly young, and I'd like to be able to take care of myself and not go into a nursing home. That's the reality.

Empty nose doesn't happen over night. It can develop years or decades later after the surgery. Especially when you get older. So, yes it's still a possibility. My ENT had already talked about years ago how dry my sinuses are. Dry sinuses is a symptom of empty nose. Not saying I have empty nose, but it is a possibility that it could have been starting years ago as my ENT documented real dry sinuses. So, it's something I've been dealing with. I know what surgery I've had and what was cut out. I've looked at my CT scans of my sinuses. When you have turbinates cut out, you run the risk of developing empty nose. The articles I've read on ENS states that it is best to avoid any turbinate cuting unless something extreme like tumors or polyps. There was enough cutting that my ENT recommended no more surgery. I actually had two surgerys of my sinuses.

With all due respect, how can you say I don't have something when you don't know any of facts? It's like me saying you don't have Sjogren's syndrome. It reminds me of years ago a couple of doctors telling me I'm too young to have the symptoms I have.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Narablueeyes on October 26, 2011, 06:32:33 AM
Jason, I said it before and I will say it again, you sit and agonize over everything you read. If you had empty nose syndrome you would know it. You don't have it and the surgery is long past so why even talk about it.

Please quit doing this to yourself and relax. You almost sound like you are crusing the internet trying to find out more bad things to worry about. Life is what you make it. Agonizing over the past, present and future is totally an exercise in futility. There are some things that we just have to put in the hands of a higher power and go on with our lives.

As was said earlier, it seems that you get stuck on a subject and can't give it up. Many of these things don't have a final or perfect answer and talking about them day in and day out won't change things. Irish

I've been seeing doctors for over 10 years now. Everytime it's like hitting a brick wall as the doctors don't want to do anything. So, my appointments are usually always a first or second time appointment as the doctors give up after the first visit. My problems progressivly get worse every year. They started 15 years ago, so it is pretty advanced. I was pretty much disabled before I even started working. So, I haven't been able to have a career or family because of it. So, obviously I'd like to get better. Since the docs don't do anything, I've had to take an active approach. I decided years ago I didn't like to just sit around getting worse every year waiting on a doc to finally do something. I'm still fairly young, and I'd like to be able to take care of myself and not go into a nursing home. That's the reality.

Empty nose doesn't happen over night. It can develop years or decades later after the surgery. Especially when you get older. So, yes it's still a possibility. My ENT had already talked about years ago how dry my sinuses are. Dry sinuses is a symptom of empty nose. Not saying I have empty nose, but it is a possibility that it could have been starting years ago as my ENT documented real dry sinuses. So, it's something I've been dealing with. I know what surgery I've had and what was cut out. I've looked at my CT scans of my sinuses. When you have turbinates cut out, you run the risk of developing empty nose. The articles I've read on ENS states that it is best to avoid any turbinate cuting unless something extreme like tumors or polyps. There was enough cutting that my ENT recommended no more surgery. I actually had two surgerys of my sinuses.

With all due respect, how can you say I don't have something when you don't know any of facts? It's like me saying you don't have Sjogren's syndrome. It reminds me of years ago a couple of doctors telling me I'm too young to have the symptoms I have.

I wasn't going to get into this conversation, just trying to see if I could find anything of value that I could use for myself.  But I just want to ask you Jason, WHAT is it you're trying to get out of this conversation?  I can understand your frustration; I've been looking for answers for years and don't like most of the attitudes of indifference and idiotic hype I've rec'd from various drs and nurses. 

Im just not sure what you're after here.  A fight?  Help?  An ear to hear you?  You'll gladly get help, suggestions, and plenty of shoulders to lean on, but if you're looking for a fight, you're fighting with the wrong people.  And I only say "fight" because...well, it seems that no one can satisfy your posts and you argue with everything. 

I've seen posts of people who had plaquenil toxicity and suffered greatly for it, but there are more people out there who have benefitted from it.  And most of those posts I read said that the drs hadn't told the patient about receiving consistent eye care from their optha dr.  Seemed like the doctors didn't even know about plaq toxicity until it was too late.

I'm new to all this Sjogren's and lupus and IBS-A, that's why I joined these forums: to learn.  I want to help, I really do, but I'm just not sure what you want.  I don't think anyone on here does.  I'm sorry if I've over stepped my boundaries but I felt compelled to say something.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 26, 2011, 07:24:13 AM
The biggest side effect of Anxiety meds is dry mouth. So, I don't see the benefit of taking anxiety meds to help reduce anxiety on the theory that the anxiety could be adding to the dryness when the treatment itself probably will cause dryness.
(sorry Nara, I didn't put your words in a quote)!!


Anxiety (only) meds such as Lorazepam "do not cause any dryness" Nara....it's the meds for depression which they sell as being "depression and anxiety" drugs....these are the ones with mouth drying side effects such as Zoloft, Paxil, Prozac, Lexapro, etc.  It's the anticholinergic effects of those drugs.  There is not the same effect in "anxiety only" drugs like Lorazepam.
This is what I've been told by MD's and I think you can look it up on the internet to verify. :)   
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Narablueeyes on October 26, 2011, 07:28:29 AM
The biggest side effect of Anxiety meds is dry mouth. So, I don't see the benefit of taking anxiety meds to help reduce anxiety on the theory that the anxiety could be adding to the dryness when the treatment itself probably will cause dryness.

Anxiety (only) meds such as Lorazepam "do not cause any dryness" Nara....it's the meds for depression which they sell as being "depression and anxiety" drugs....these are the ones with mouth drying side effects such as Zoloft, Paxil, Prozac, Lexapro, etc.  It's the anticholinergic effects of those drugs.  There is not the same effect in "anxiety only" drugs like Lorazepam.
This is what I've been told by MD's and I think you can look it up on the internet to verify. :)

Um, that wasn't me.   :)
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: valene2009 on October 26, 2011, 08:30:17 AM
just my 2 cents.. i take xanax and it helps me greatly-not only with my anxiety but with the dryness of my eyes... i get so stressed when they are dry and if i take a little xanax i calm down and the dryness gets way better... i havent noticed my mouth getting any drier from taking xanax.. actually the opposite.. again i have extreme anxiety with this disease and the xanax does help
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Meld256 on October 26, 2011, 09:38:59 AM
valene,

Glad to hear xanax has helped you in several ways.  ;)  This disease can certainly cause some anxiety in many of us.
Take care,
Melinda
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Meld256 on October 26, 2011, 09:47:12 AM
Gold,

Sometimes these "quotes boxes" get confusing, or maybe it's just me.  ;)  I think the response was Jason's to you on reply #45 about anxiety meds causing more dry mouth.

You might have already seen that, so I'll step back out of the discussion.
Have a good day,
Melinda
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Narablueeyes on October 26, 2011, 09:48:33 AM
just my 2 cents.. i take xanax and it helps me greatly-not only with my anxiety but with the dryness of my eyes... i get so stressed when they are dry and if i take a little xanax i calm down and the dryness gets way better... i havent noticed my mouth getting any drier from taking xanax.. actually the opposite.. again i have extreme anxiety with this disease and the xanax does help

I take Ativan when I get stressed but I've never really given much thought or noticed any dryness issue when taking it.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gurs on October 26, 2011, 10:40:35 AM
I just read where extreme stress and anxiety and cause even more dryness....that makes sense!!
Our bodies just tense up so much more...wowie....

Gursie
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Dry1000 on October 26, 2011, 07:22:06 PM
Hey everybody

           My bloodwork and lip biopsy comes up normal,however I had HORRIBLE DRY MOUTH and EYES, I was super tired and just felt horrible. I have been on Plaquinel for a little over a year now and I feel soooo much better. I believe Plaquinel does slow down the progression or even has stopped it for me. Plaquinel has given me my life back and I am so thankful for it.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 26, 2011, 08:09:13 PM
Dry, That's a great review on Plaquenil that Jason should read.  I agree that anxiety causes more dryness in eyes and mouth.  Most people I've noticed are on anti depressants and they do have some drying effects compared to a straight anxiety med like xanax, lorazepam.  The point I was trying to make is that many drs prescribe the antidepressants for people with anxiety over SJS and I don't know why they just don't give them the non-drying anxiety meds except for the fact that they can be addictive.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: irish on October 26, 2011, 08:16:33 PM
The xanax, etc. and other anti-anxiety drugs are also drying. These drugs that affect the central nervous system pretty well all cause some dryness---the amount of dryness is a very individual reaction. Wish that none of the drugs caused dryness----or nausea.  ::)Irish ;D
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: irish on October 26, 2011, 09:30:09 PM
In reference to the turbinotomy---I had a very aggressive one done about 10 years ago. It was actually the worst surgery I have every had and I have had a fair amount of them. I know all about the dry nose syndrome and I have to add that I have not sat around thinking that I should worry about getting it. My nose and sinuses give me fits and I have been doctoring since 1996 with them. You did not indicate that you do have the dry nose syndrome the way I read it.

There is so much that we go through and to sit and agonize over all of it and relive it seems to be an exercise in futility as they say. We all do the best we can---we research some, ask our doctors questions, fire a doc and get a new one if needed and we go on.

Researching all our ailments and trying to keep ahead of the game can become an obscession that will never be satisfied. As a medical professional I have long ago learned that the more I read about a disease process or symptoms the less I know. Literally!!! Our brain goes on overload and we start to read things into what we are reading and make faulty opinions out of the internets faulty opinions---especially when we are dealing with our own illnesses.

Jason, I don't expect you to answer this, but I also wonder what you are trying to accomplish or get out of this site. None of us seem to be able to answer your questions and you say the same things over and over.  I am not trying to be rude but I am wondering just where you are coming from or where you are going with this. Please know that I do care about your condition and hope that you are getting the care that you need.

I also wonder if you have any hobbies or anything that you can do as a diversion to get your mind off your illness and also to socialize. We all need to do something besides think about our illnesses.  Good luck. Irish ;D
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gurs on October 27, 2011, 03:51:15 AM
Everything to us is basically drying...I always got alot drier when i took some Motrin, but thought it was just me, until I read
an article recently in Arthritis today magazine that listed Ibuprofen as having a 'Drying mouth effect"? Even after I take a bit of tylenol, same thing. When it says can cause "dry mouth" it affects all my mucous membranes...eyes, sinuses, vagina, etc.
I really watch how much Im taking of any med. I try to take the lowest dose possible....pain relievers, anything is just drying..
Its really a nightmare to deal with....

It also seems alot of us have the sinus issue going on. Mine has been extreme for years, and doctors always want to operate, etc.
But, I know it would only make things worse ,and I would get no relief. Our mucous membranes dont provide the added moisture we
desperately need, and some of us prob have a CNS issue involved with this as well. Mucinex provided some relief, but then it was
getting "too drying" for me so I stopped taking it.

Gursie
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 27, 2011, 07:18:53 AM
I read that Arthritis Today mag....everything does seem to cause dryness to one extent or the other, Gursie.  I like that magazine....I'm happy to be getting it for this year :)
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Meld256 on October 27, 2011, 07:31:45 AM
Gursie and gold,

That IS interesting about dryness.  I was looking back and checked the trazodone I take; sure enough, dry mouth is a side effect.   :P  However, it helps my pain, sleep and disposition.

Now that I've been on Plaquenil for 6 months, I don't have nearly the dry mouth problems that I did before.  I can actually wake up without my tongue stuck to the roof of my mouth!  And it's helped my fatigue and joints, so I'm not planning on giving up on either med anytime soon.

We all must just do what we can to feel better and make the right choices for us, right?
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 27, 2011, 08:39:47 AM
Meld,
I believe my rheumy is going to offer me Plaquenil when I see her in Dec and I have resolved to accepting it but at low doses to begin with.  I'll take the chance of side effects...not too worried about them now. :)
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Narablueeyes on October 27, 2011, 09:09:57 AM
Meld,
I believe my rheumy is going to offer me Plaquenil when I see her in Dec and I have resolved to accepting it but at low doses to begin with.  I'll take the chance of side effects...not too worried about them now. :)

Me too.  She gave me the pamphlet on plaq yesterday along with the cymbalta script.  I'm assuming you can take those two together...
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gurs on October 27, 2011, 10:40:52 AM
Make sure you dont start both med's at the same time ok? you wont be sure which one if any, is causing the side effects etc. I would wait
at least a few weeks, see how one works with you, then add the other med. Also, yes, start with the smallest dose possible. I ask my
rheumy and pharmacist if i can cut the tabs etc and usually do that with any new medication. You can always increase your dosage.

Gursie
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Narablueeyes on October 27, 2011, 11:52:02 AM
Make sure you dont start both med's at the same time ok? you wont be sure which one if any, is causing the side effects etc. I would wait
at least a few weeks, see how one works with you, then add the other med. Also, yes, start with the smallest dose possible. I ask my
rheumy and pharmacist if i can cut the tabs etc and usually do that with any new medication. You can always increase your dosage.

Gursie

Gotcha!!   :D
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: irish on October 27, 2011, 02:57:55 PM
gold, My immunologist started me on the Plaquenil at 200 mgm once a day. I can't say that I have had many issues from it. I take it at noon after I eat with a good amount of water.''It caused some GI upset the first couple of weeks but nothing really bad. Some cramping, etc but it seems that if I watched what I ate and just was more careful than usual my tummy soon settled down.

I was sort of expecting more issues, but at the same time I went into this with the attitude that everything would be fine cause my doc told me it shouldn't cause problems. I can see where it could cause issues if you started out on the 200 twice a day though.

Also, I have one other pill that I take on a daily basis that doesn't have any interactions, etc but I noticed the first time I took them close to each other that I had more stools and cramping. So, I changed the dosage time of the other pill and things are fine now.

I hope you can use it and get along good. I am finding that the mucous membranes in my nose and throat seem to be less swollen and it seems like the mucous is running a little better. I still havae the "chunkies" etc but seems like something is happening. I also have started to sleep a little better the past couple of nights and get tired and go to bed a little earlier.

If this happens to become better as time goes on I will know that the inflammatioin is going down some. I have always felt that my sleep issues are from my immune system going full speed ahead trying to kill me off. Always told docs when you fixed this (indicating nose and other issues) I will start sleeping better. Autoimmune revs us up so much that we are just totally stressed out and find it hard to operate at any level. Good luck. Irish ;D
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 27, 2011, 08:11:29 PM
Oh I'm happy for you Irish!!  I have some real issues in my nose right now with swelling ..... it's the right side and so the right eye also tears and runs and gets red and swollen....I've had this so long and thought it was allergy but allergy pills really don't resolve it so I think this has been a SJS thing that I've had many years. 

My aches and pains are starting....more of a burning sensation in my hands and feet....mostly my hands right now.  Don't know if the RA is rearing it's head or if it's the osteo with the SJS affecting my skin, tendons, muscle....it does feel more like the latter than joint pain. 

So, I have resolved to Plaquenil being inevitable and I'm wanting to slow down any more damage, if possible. 

Boy I'm really happy you're seeing results!  My sleep patterns have been messed up for years too...thought it was due to menopause but I'm sure it's been the SJS!  I look forward to some hours of sleep instead of getting up every two hours!  Sending more positve vibes your way :)
Jill
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Meld256 on October 27, 2011, 08:31:21 PM
gold, and Nara

I hope you'll have good results from Plaquenil. Starting at a low dose for many of us is a good idea. My doc sort of told me to go for it and take 400 mgs. but after reading here, I started more slowly:

One 200 mg. pill daily for a week, then 2 every other day for a week, then up to 400 mgs. daily. I'm not sure if that helped, but I didn't have much problem. Just a tiny headache and little stomach upset for a couple weeks, along with an itchy head but then it was over.

The tingling/burning sensation in my knees, hands and feet are pretty much gone. It was painful and really driving me nutty. My joints feel so much better and I have less fatigue. I still have a few days that I just plain hurt and are sore all over, but they are fewer and farther between, so I look at that like real improvement!

Sending positive thoughts your way, ;)
Melinda
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: gold55 on October 27, 2011, 09:28:53 PM
Ohhhh that burning senstation in my hands and feet.....to be rid of it would be a dream!  Thanks for the pep talk Melinda.  I'm so glad days are getting better and better for you.  I will plan to start slowly....and work my way up.  I'm not afraid of Plaquenil now....there's too much hope in at least trying it!  thanks again!
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: irish on October 27, 2011, 10:03:37 PM
I haven't had a whole lot of the burning issues. However, I did have the burning from the knees down for aboaut 1 1/2 years and it was miserable. Hard to sleep for sure. Back in those days I would take an ibuprofen before I went to bed cause nothing else helped.

I have had the burning in my fingers off and on over the years and it seems that every DEcember when the weather gets cold it will hit again. I sit with my hands on my heated rice bag and that helps a lot. They just don't warm up and stop burning though until they choose to. Usually I have it about 1 month and then it goes away so I count my lucky stars. Probably that is one thing the IVIG does help with the sjogrens. Sure doesn't help the dryness and mucous issues.

I will be interested to see if I get the neuropathy in my hands this winter. Hope the rest of you get some relief from your ailments on the Plaquenil. Today I cleaned kitchen cupboards, etc outside of refrigerator. I had to stop and rest about every 1/2 hour which is just pathetic but part of this is probably from the myasthenia and needing to rest before I get into trouble with the muscle weakenss.

Tonight I am not exhausted like I used to be all the time. Maybe I have more energy from the Plaquenil. Time will tell. We will all have a lot of things to compare. I have been on it about 5 weeks this Saturday. Good luck all. Irish ;D
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: jasonsmith on October 28, 2011, 06:47:51 PM
In reference to the turbinotomy---I had a very aggressive one done about 10 years ago. It was actually the worst surgery I have every had and I have had a fair amount of them. I know all about the dry nose syndrome and I have to add that I have not sat around thinking that I should worry about getting it. My nose and sinuses give me fits and I have been doctoring since 1996 with them. You did not indicate that you do have the dry nose syndrome the way I read it.

There is so much that we go through and to sit and agonize over all of it and relive it seems to be an exercise in futility as they say. We all do the best we can---we research some, ask our doctors questions, fire a doc and get a new one if needed and we go on.

Researching all our ailments and trying to keep ahead of the game can become an obscession that will never be satisfied. As a medical professional I have long ago learned that the more I read about a disease process or symptoms the less I know. Literally!!! Our brain goes on overload and we start to read things into what we are reading and make faulty opinions out of the internets faulty opinions---especially when we are dealing with our own illnesses.

Jason, I don't expect you to answer this, but I also wonder what you are trying to accomplish or get out of this site. None of us seem to be able to answer your questions and you say the same things over and over.  I am not trying to be rude but I am wondering just where you are coming from or where you are going with this. Please know that I do care about your condition and hope that you are getting the care that you need.

I also wonder if you have any hobbies or anything that you can do as a diversion to get your mind off your illness and also to socialize. We all need to do something besides think about our illnesses.  Good luck. Irish ;D

I have to apologize if I've ever come off as rude. I haven't gotten much if any sleep in the past 3 weeks due to the recent dryness. I'm talking either no sleep or just a few hours. So, it's been ruff. As long as the mouth/throat/sinus dryness is there, I probably will only be getting a few hours of sleep if any from now on. And that's with Ambien. Though having a chronic sleep disorder and also getting no sleep isn't a good combo. That new Rheumy wasn't interested in doing anything. So, I guess I'll have to try and find another. I have some hobbies. The problem is my physical and mental problems from this illness are so severe that I have great difficulty functioning and taking care of myself. I had to give up reading books 10+ years ago because it was too tiring to read and I couldn't concentrate. I'm really too tired to socialize and have chronic diarrhea which is embarrassing. But the brain fog makes it real hard to function and communicate as well. I'm practically bed ridden but I can still move around some, but not much.

Every place I worked at I got made fun of because I walked and talked funny, etc. So, I was an easy target at work for people to blame things or out right tell lies on all the time which was a non-stop problem. Some of which were very serious things that were fireable. There's alot of people out there that will walk on innocent people just so they can look better or try and protect their job. They'll point their finger at anyone and not care if innocent people get in trouble, lied about, or fired. I had to end up filing for disability as something as simple of flipping burgers would have been too hard to do mentally and physically every day. Plus, I got tired of the non-stop stress and worry at work everyday of people trying to get me in trouble all the time. The only way I know how to describe it is like being halfway between normal and a coma. Or being shot with a 1/2 dose of tranquilizer. Just answering your question of where I'm coming from.
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: irish on October 28, 2011, 09:21:05 PM
Jason, I am not trying to be difficult with your questions, but there are a whole lot of us who are in the same boat that you are.

I have not had a decent nites sleep since January 2000. I have the dryness and mucus issues from heck and it sort of runs and ruins my life. I irrigate twice a day and hack and spit night and day. I have a vest that I do twice a day with a nebulizer for my lungs. I have had a type of TB called mycobacterium kansasii that is not contagious but can be fatal. I had to be on 7-8 pills a day for 1 year as I had the TB in my lungs, liver and spleen. I now have another form of mycobacterium infection that is not fatal, but it adds to my thick mucus problems and may have to be treated eventually.

I have brain fog and difficulty from time to time with everything. I have had times when I am so sick that I literally hardly know where I am and can hardly stand up. Life can be heck. I 

I can walk, but not far and I only have 1/2 of my balance because I had a complicated surgery that destroyed the balance on one side while fixing some other ailments. I was deaf in that ear prior to the surgery.

This is just a small segment of my illness. I haven't been able to work since 2003 and work was extremely difficult for many years prior to that. I have depression and have had it most of my life but get treatment and deal with it.

I hate to go on and on like this but I wanted you to know that I suffer as do all people who are on this site. As many ailments as I have I consider myself lucky because so many others are in worse shape than I am. We can't judge another suffering. I am not trying to judge your suffering either. What I do have trouble with as do a few of the others on this site, is the way you ask the same question over and over again. You are appear obsessive about the information that you are finding and seem to take everything on the internet as gospel truth.

You need to know that most of the discussion forums out there lend to inaccurate information plus poor use of what information they do have. I have been to a lot of discussion forums and after several minutes or visits I have to leave cause I find that they are of very poor quality and are not managed well.

You  seem to over react to all this information and it is very obvious in your postings. We are trying to help you but after 10 people have explained something to you different ways and you are still posing the same questions and information it seems that either you don't understand us or you are choosing to ignore us.

We want you to visit us but it would be nice if you could learn to adjust your attitude towards information that you are receiving from all these good people. Thank you. Irish
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Still in the hunt on October 29, 2011, 06:23:49 AM
Oh boy
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Meld256 on October 29, 2011, 07:19:05 AM
Irish,

 I'm so glad you may be seeing from benefit from the Plaquenil.  It's really seemed to help my energy most days.  Not that I'm running marathons, but I can get more done than I used to. 
My husband really noticed when I was able to plant a few flowers outside this summer, and just pulling the garden hose around a little was a big deal. I didn't have the strength to even water the plants before.

I hope your hands feel better in Dec. too. My knee and foot burning was awful;my knees were so swollen and felt like a 2nd degree sunburn all the time. They still swell but they're not stinging like crazy.

The cold weather can really do us in sometimes.  Let's hope we all have a better fall-winter than normal.  :D
Title: Re: how do they know Plaquenil slows the progression of sjogrens??
Post by: Still in the hunt on October 29, 2011, 12:02:10 PM
These message boards are a friendly helpful place, please post with thoughtful consideration of others. Thank-you.