Author Topic: how do they know Plaquenil slows the progression of sjogrens??  (Read 22492 times)

gurs

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #60 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
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

gold55

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #61 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 :)
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 #62 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?

gold55

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #63 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. :)
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

Narablueeyes

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #64 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...

gurs

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #65 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
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

Narablueeyes

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #66 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

irish

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #67 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

gold55

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #68 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
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 #69 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

gold55

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #70 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!
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

irish

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #71 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

jasonsmith

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #72 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.

irish

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #73 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

Still in the hunt

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Re: how do they know Plaquenil slows the progression of sjogrens??
« Reply #74 on: October 29, 2011, 06:23:49 AM »
Oh boy