Author Topic: how do they know Plaquenil slows the progression of sjogrens??  (Read 21992 times)

gurs

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #30 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
« Last Edit: October 23, 2011, 09:53:55 AM by gurs »
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

engy

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #31 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
« Last Edit: October 23, 2011, 12:41:29 PM by engy »
DX:Sjogrens w/mild Lupus overlap,Hashi,Celiac,Raynauds,Sm.Fiber Neuropathy,POTS,Fibro.,CFS,OI & other dysautonomia.
No thyroid
Fish/Shellfish Allergy

RX:Plaquenil,Synthroid,LCarnitine,CoQ10,ALA,Dribose,Tumeric/Curcumin, Milk Thistle,AdreneVive,Fish Oil,Flaxseed Oil,Magnesium,B12 shots,vit D & C

jasonsmith

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #32 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.

engy

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #33 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!
DX:Sjogrens w/mild Lupus overlap,Hashi,Celiac,Raynauds,Sm.Fiber Neuropathy,POTS,Fibro.,CFS,OI & other dysautonomia.
No thyroid
Fish/Shellfish Allergy

RX:Plaquenil,Synthroid,LCarnitine,CoQ10,ALA,Dribose,Tumeric/Curcumin, Milk Thistle,AdreneVive,Fish Oil,Flaxseed Oil,Magnesium,B12 shots,vit D & C

gurs

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #34 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
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Carebear

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #35 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.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

jasonsmith

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #36 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.

gurs

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #37 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
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

jasonsmith

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #38 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.

jasonsmith

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #39 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?

irish

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #40 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

Meld256

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #41 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.  ;)
« Last Edit: October 24, 2011, 02:02:55 AM by Meld256 »

jasonsmith

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #42 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.

gold55

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #43 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.
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

Meld256

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #44 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