Hi all
My Ra went to a RA meeting and the concensus was the plaquenil doesn't slow down the progression of sjogrens but he said that 99 percent of RA's prescribe it anyway. I have dry issues with eyes and mouth. It does seem to help with my mouth but he said it usually doesn't. I've also been on the paleo diet and no gluten. I wonder if I should stay in this drug or not. I mentioned in another post that my hair has been shedding and I think that the plaquenil is causin it to shed more. I just don't want to be on a drug if not necessary. As always I welcome your comments. I would love to be able to treat this naturally.
Christian :)
How long have you been on it?
You could always do a trial without it (don't change anything else you are doing or taking) and see if the hair loss improves or if your dryness, aches, fatigue, rashes worsen. Those are the things I hear most often that Plaquenil helps.
Then you can better decide if it is worth taking this drug or not.
You will have to give it a good 3 months to get out of your system though to see if the hair loss improves, because it takes awhile for it to completely clear from your body.
Talk to your Rheumy about it, make sure they are aware of what you are doing. Usually people are able to stop it without problems, you shouldn;t need to taper it, but ask you doctor to be sure and follow his directions.
Nancy
Thanks so much for replying. I've been on it for 7 weeks.
There has to be some reason that many rheumies prescribe Plaquinil/hydroxychloroqine. I am sure they could come up with a cheaper placebo. It has GOT to be be doing something in enough cases to justify the prescription rate.
I thought this too Scottie. I know this sound so vain but I don't want to keep losing my hair. It's gotten so thin. If I knew taking this drug would make a difference then I would continue it. My RA is on the fence about it.
Plaquenil is prescribed as it seems to ancedotally assist with SYMPTOMS.
I have been concerned since I first started frequenting this board to read over and over the misinformation that Plaquenil SLOWS THE PROGRESSION of sjogrens- it has never, in any well researched study, been showed to do so.
Many doctors prescribe it as SOME patients find it eases joint pain and fatigue- which can be very helpful for symptoms management. It does not in any way slow down or alter the underlying autoimmune process that is causing the fatigue or joint pain however.
A distinction that should be noted.
Quote from: Chrisb on February 22, 2013, 03:02:09 PM
Hi all
My Ra went to a derm meeting and the concensus was the plaquenil doesn't slow down the progression of sjogrens
It doesn't matter if they say it does help; it doesn't matter if they say it doesn't help. Their consensus is uninteresting.
This topic is broached repeatedly. Until we have well-conducted trials designed to answer this question, there is one, and only one, legitimate answer: "we don't know."
Styx
Quote
I have been concerned since I first started frequenting this board to read over and over the misinformation that Plaquenil SLOWS THE PROGRESSION of sjogrens- it has never, in any well researched study, been showed to do so.
Many doctors prescribe it as SOME patients find it eases joint pain and fatigue- which can be very helpful for symptoms management. It does not in any way slow down or alter the underlying autoimmune process that is causing the fatigue or joint pain however.
A distinction that should be noted.
You make a very important and valid point, Cargillwitch, but I wonder it the distinction required is that it may "slow the progression
of symptoms"?
With a disease process as erratic and variable as SjS (or any other AI for that matter) I've often wondered how any scientific proof of alteration in progression can be measured. My personal take, based on my own experience, is that a combination of Plaquenil, Prednisone and MTX (so not an example of the effects of Plaquenil alone) lessened symptoms enough to allow me to become functional; it realigned my blood work to lessen the circulating proteins to nearer normal levels, thus protecting kidney function; and improved cognition measurably. After approximately 2 years on that protocol, I wasn't presenting with new skin lesions nearly as often as before treatment, and all complications of dryness (GERD, corneal abrasions, cracked tongue and oral mucosa) had lessened.
Nearly nine years later, all symptoms seem to have resumed their march forward joined by those of RA, and will see my rheumy Monday to discuss further or different treatment, but I would have to say that with out my drug protocol including Plaquenil, I would have reached this state some time ago, so , in my case, progression of symptoms has slowed....but then again, who's to say it wasn't all coincidental and I would have experienced spontaneous ebb and flow of the same nature with no pharmacological intervention!
From experience, I believe it does slow the progression and lesson symptoms..I was on it for 8 year and thought it wasnt doing anything, though, I did notice relief from fatigue and the dryness immed. We'll, decided to stop it on my own and then bammo..all my neuro issues started about 2-3 months later and things got progressively worse shortly after that.
I dont care what the doctors say, or the studies, etc..they all contradict themselves anyways. We dont have any other options for medications either, as plaq is the lesser toxic of them all.
Just my two cents..
Gursie
I had been on Plaquinel for about eight months, when I had to stop taking it due to a major spine surgery. It took four months to get totally out of my system, and when it was my symptoms came roaring back. I remembered quickly how terrible my joint pain and rashes and dryness were.
I'm happy to be back on it, and wasn't happy with the two months of nausea while I re-acclimated to it.
I agree with Styx as far as slowing "progression of the disease", no study to prove or disprove that, so really nobody knows one way or the other.
On the otherhand lessening symptoms you can measure for yourself with your individual symptoms.
Whether lessening symptoms is or is not slowing progression of the disease is still to be determined.
For me, it significantly lessened my joint pain, skin rashes, muscle aches and fatigue so yes it is worth it for me. I still have sjogrens and have no clue if it slowed its progression or not but I feel better and am able to live a comfortable life so I am happy with Plaquenil.
Nancy
Thanks for the info Nancy. I just started Plaquenil yesterday and I am not as much concerned with whether it stops the progression of Sjogrens, but I am so desperately looking for it to relieve all of the symptoms that you mention.
My rheumatologist told me that it usually takes approx. 3 months to see any relief. I cannot wait, as I am just looking to function in the world as best I can with this chronic, progressive disease.
Ditto Styx..we will never know what it really does. All I know is we dont have many options either. I dont base anything on what doctors or studies say..only from experience and especially my SS friends experiences.
Gursie
Since your RA attended a Dermatology conference/meeting; I would ask for clarification of his/her statement. Perhaps within the confines of the field of dermatology Plaquinel does not have efficacy with SJS/ derm symptoms, and is not the treatment of choice.
So dermatology issues are another area, and those which arise should we develop another autoimmune response/condition need to be treated differently.
(although a search on MedlinePluse showed 8 derm results: Use for Luspus, Sarcoidosis, Lichen...http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=plaquenil+dermatology&x=0&y=0)
Here are 10 citations on MedlinePluse from noted Organization (not random studies) regarding SJS and treatment, ie. Plaguenil.
http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=plaquenil+sjogren&x=13&y=18
So take heart for a vast number of people with Sjogrens, and other AI, Plaquenil works and does relieve their symptoms.
Oh please forgive me. I meant to type RA meeting! I've been to do many doctors I get everything mixed up! Between oncologogist, Ra, ob, derm, gp.......
My apologies!
Christian
Are you using RA as short for Rheumatoid Arthritis or short for Rheumatology?
Rheumatology. I'm so sorry about that. :(
That's ok, that is what I though, just thinking too much :D
Nancy
I'm taking Arava now, no more Plaquenil and won't ever take it again no matter what!
Why Mary bee? What happened?
I do find a mark able decrease in my symptoms with Plaquinel. The fatigue is much less And I am able to face my daily household chores and errands and caregiving for my kids happily and much more easily. I went without for about two months and it just got worse and worse, like a weight was coming down on me, making me less and less able to keep up to my life. I noticed less fatigue quickly after restarting it but I am just now, after three months back on it, noting that I have a lot more energy.
It also got my parotids to work which I discovered when I could again eat bread. Your parotids secrete the saliva that converts sugar to starch. I also had more saliva. Off of it and both regressed a bit.
You have to do what is right for you. Reactions to meds are so individual and unique. I never thought I could be off of salagen, and these past two days I have only taken two. Restasis I thought I could live without, and my eyes just got more and more uncomfortable.
In my humble and honest opinion, any med that will give me more normal time to enjoy my kids and my life, before things get severe (which they may not but) is something I am willing to try.
I am currently trying to work up my nerve to go grain free. Hasn't worked yet, lol, but I have reduced my consumption by 75% I am sure. And refined sugar, that as well.