if plaquenil can slow the progression of sjogrens i wonder why my rheumy has me on 1/2 dose of 200mg and then she said in mos to be off of it after looking at my blood work possibly..she said it doesnt help with dryness (i knwo a few of u on here said it did ) but i dont think its helped my eyes. if anything they have gotten worse.
if it does help slow the progression tho-would that mean slowing the progression with the dryness too??? just curious..i have googled so many times and cant find a definitive answer.. will be calling my rhemy once again tomrorow..
thanks gals..adn guys
I'm not a doctor, but from what I read on these boards from other members - there are reports that Rituxan and Cellcept have alleviated dryness symptoms for some members. Some members (not all) have also reported relief from dryness after heavy doses of prednisone.
Of course, these meds have side effects and are not readily prescribed by doctors. I don't know how bad your Sjs symptoms have to be before doctors are willing to prescribe these meds.
The first line of defense is Restasis and doctors will readily prescribe that.
For non-prescription relief - I read a study that sea buckthorn oil will relieve eye dryness for some. Of course, it goes without saying that all supplements should be examined for interactions with other meds being taken before using the supplement.
Rituximab is the only drug demonstrated to improve sicca symptoms of Sjogren's in a randomized, controlled trial, and the improvements were quite modest.
Plaquenil has been demonstrated to help with non-sicca manifestations of Sjogren's.
I don't think there is much data around whether these drugs "slow down the progression" of Sjogren's. I wish that data existed! It would be great to have more trials for Sjogren's.
Styx
Ive had multiple infusions of rituxan and it did nothing for my dryness at all..in fact, made it worse, but some other symptoms got a bit better. I think it helped with some of my CNS issues mainly.
Gursie
Plaquenil is considered a disease modifying drug. Remember that there isn't an area of our bodies that Sjogren's doesn't adversely effect. No, I personally do not want to go off of 200 mg twice a day. I have WAY to much bad going on with me to consider the possibility that my progression of this disease could be worse without the plaquenil. Just my opinion.
gurs, that was my experience as well; nevertheless, the best evidence to date says it works, albeit not very well.
Wait I was under the impression that unless you had lung kidney and joint/fatigue problems that the disease was not progressive? Should I be on plaq is this going to keep going till my whole body is involved? I have the awful dryness and some fatigue but nothing like at the start, and I dont think and major organs are really getting damaged...well my pancreas and esophagus, but the docs cant agree on whats causing it. How long do we have if we are not on plaq before systemic complications cant be reversed or stopped? Is this always progressive, my doctor said its not that sometimes all you get is drying?? Now I am worried should I demand to start plaq now?
Quote from: Tivia on November 29, 2012, 02:25:39 PM
Wait I was under the impression that unless you had lung kidney and joint/fatigue problems that the disease was not progressive? Should I be on plaq is this going to keep going till my whole body is involved? I have the awful dryness and some fatigue but nothing like at the start, and I dont think and major organs are really getting damaged...well my pancreas and esophagus, but the docs cant agree on whats causing it. How long do we have if we are not on plaq before systemic complications cant be reversed or stopped? Is this always progressive, my doctor said its not that sometimes all you get is drying?? Now I am worried should I demand to start plaq now?
Hi Tivia, I would not worry too much about this. When I said "progression" I was referring to the sicca symptoms of dry mouth and dry eyes. These symptoms typically progress to a point (which is not always complete dryness) and do not remit. It is uncommon, even for longstanding Sjogren's, for systemic complications to develop.
With that being said, I personally would still take Plaquenil as a precaution as it has an excellent safety record and could prevent complications (though I think empirical data regarding this is non-existent, so that's just my opinion).
I know i have stated this in several different postings before...I was on Plaquenil for 8 years and felt like it was doing nothing. Then, decided to stop it on my own, and sure enough, 2-3 months later all my CNS issues started big time ,and I think the damage was done. It also helped with the dryness and fatigue..If you can handle any side effects from it, and have your eyes checked at least every 6 months, would stay on it or request to try it. We dont have many options guys? Even though some feel good now, it doesnt mean the inflammatory process isnt destroying something in our bodies? To me, this med works as a preventative...its not a magic pill that will erase all our symptoms, but will help some.
Gursie
Gursie...I believe as you do.
Also, per Medifocus Guidebook on: Sjogren's Syndrome:[/b][/font][/color]
"In approximately 40% of patients, Sjogren's syndrome progresses beyond the exocrine glands and systemic (extraglandular) features develop."
To my mind, I would think that we develop damage at times before any symptoms are recognizable (I have had Sjogren's related vasculitis visible on my legs three times, even before the diagnosis of our disease was made for me---vasculitis can occur in internal organs too!)
[This book is an excellent resource and was just updated last month...I'm ordering a new one day. The link is here: medifocus.com/2009/landing.php?assoc=digest&keyword=E92-427747&gid=RH011 10% discount now and free updates for one year. Includes all the professional references and latest research citations/links which is an excellent thing to have available when going into a discussion with docs.]
Quote from: olmphoto2 on November 30, 2012, 08:39:21 AM
"In approximately 40% of patients, Sjogren's syndrome progresses beyond the exocrine glands and systemic (extraglandular) features develop."
That's more common than I thought. I wonder though: are they differentiating "primary sjogren's with extraglandular manfiestations" and "secondary sjogren's (i.e. Sjogren's in addition to extraglandular manifestations associated with another autoimmune disease)"? Although I suppose that's not always possible.
Quote from: Styx on November 30, 2012, 10:28:56 AM
Quote from: olmphoto2 on November 30, 2012, 08:39:21 AM
"In approximately 40% of patients, Sjogren's syndrome progresses beyond the exocrine glands and systemic (extraglandular) features develop."
That's more common than I thought. I wonder though: are they differentiating "primary sjogren's with extraglandular manfiestations" and "secondary sjogren's (i.e. Sjogren's in addition to extraglandular manifestations associated with another autoimmune disease)"? Although I suppose that's not always possible.
Me too, I didnt think that many went that way. Now I am scared and have a lot to think about. Going on a major drug like plaq means I better really be sure, because I am one that does not like putting drugs in my body unless absolutely needed. Even the helpful meds over time can cause major issues. I wish there was a definite way to know if I need to start plaq or not. Oh another thing, are there tests they can run to see if its attacking internal organs?
Plaquenil is pretty darn safe. It's been studied in lupus extensively, and even with long-term use, it's unlikely to cause problems.
But I understand the apprehension. I hate taking new drugs. I'm always worried I'll be the one that has a reaction.
Styx
Quote from: Tivia on November 30, 2012, 03:38:50 PM
Quote from: Styx on November 30, 2012, 10:28:56 AM
Quote from: olmphoto2 on November 30, 2012, 08:39:21 AM
"In approximately 40% of patients, Sjogren's syndrome progresses beyond the exocrine glands and systemic (extraglandular) features develop."
That's more common than I thought. I wonder though: are they differentiating "primary sjogren's with extraglandular manfiestations" and "secondary sjogren's (i.e. Sjogren's in addition to extraglandular manifestations associated with another autoimmune disease)"? Although I suppose that's not always possible.
Me too, I didnt think that many went that way. Now I am scared and have a lot to think about. Going on a major drug like plaq means I better really be sure, because I am one that does not like putting drugs in my body unless absolutely needed. Even the helpful meds over time can cause major issues. I wish there was a definite way to know if I need to start plaq or not. Oh another thing, are there tests they can run to see if its attacking internal organs?
You have to weigh the risks and benefits, consider what damage the disease is doing/ odds of doing, vs what damage the medication is doing/ odds of doing. Plaquenil side effects are minimal and only small odds of occuring. If your sjogren's is extraglandular I think that has worse odds of doing damage even if you aren't sure where it might strike.
Nancy
Quote from: Styx on November 29, 2012, 01:07:23 AM
Rituximab is the only drug demonstrated to improve sicca symptoms of Sjogren's in a randomized, controlled trial, and the improvements were quite modest.]
My sister had chemo yesterday for lupus. She goes in every 8 months for treatment with Rituxan and Cytoxan alternating on different days. One of the chemo patients with Sjogrens remarked: 'I am dry everywhere. Rituxan is the ONLY thing that has helped my dryness.". The person next to her, also with Sjogrens, said that Rituxan did nothing for her dryness.
Put it this way, Plaquenil is pretty mild compared to the next line of drugs like Metho, Cellcept, Arava, etc..then, the bigger guns like
Rituxan & cytoxan etc. Ive tried pretty much all of them, but cant handle the side effects with them. Also, almost forgot the steriods. They
have helped me, but now I have alot of side effects from them.
I know we all dont want to be on medications, but we are ill and have a disease. Just because you feel good today, doesnt mean damage is not getting done. When you start to feel it, seems its too late..damage is done, or is super hard to calm it down.
Gursie
By the way...Plaquenil (hydroxychloroquine) has been approved for use by the FDA since 1955 and has been in extensive use worldwide to treat malaria. So we have a mediation here that has a long term use history, with known effectiveness (efficacy) and side effect monitoring over large patient populations over time. It was in use before WWII according to the Johns Hopkins Lupus Center, at which time it was discovered that it could also help lupus patients.
2 dif rhemotologists i went to say plaquenil doesnt help with dryness---i know it didnt help mine.. but i know some of u it did and that is great. i am so disappointed in docs... not sure if i should get off of it or not..
I would not anticipate any symptom improvement with Plaquenil. I just take it knowing very well that it has a proven track record of slowing disease progression in Sjogrens and other diseases. [Wikipedia has a rather technical explanation of how it calms the body's autoimmune responses should you be interested in reading about that.]
i asked my rhemy about slowing down the progression adn she said there is no proven facts that it does.. ughhh. i am going to research it.thanks
Plaquenil definitely improved my dry mouth and eyes.
I honestly dont care what the docs tell me...Each person responds sooooo differently to meds, as Im sure we are all aware. ONe might say it helps with dryness, the other may say otherwise etc. Until we try it for ourselves, and see how WE feel on it, then we will know. I dont care about the studies either on any medication. They are so contradictory...Like I said before, I didnt think the plaquenil was doing anything for 6 years until i stopped it...then, all heck broke loose..like my entire body just exploded.
Just my two cents...
Gursie
so gursie.. when u were completely off it you got more sick? did you get back on it? and if you did did it help you then?? i am very confused as my doc says to get off of it where other docs told me to be on it?? i am going to try to get an apt with another rhemotolgist in town..there are only 5 here so it may take a few months ...ughhh
How do you know whats causing what, I mean I have graves thyroid they said 7 years ago supposedly I am in remission as of the blood work 2 months ago. But I am tremoring blood pressure is rising, and pulse too..along with the weakness. Now before I always knew this was graves flare, not so sure now. My doctor will say its thyroid and not want to give plaq for that. But really how do we know if its sjs, or graves. I have also seen that primary is more intense than secondary with systemic manifestations, thats what I was told.
Would graves or crohns/uc be considered primary then and my sjs secondary..or do those illnesses not count toward sjs?
Quote from: Tivia on December 02, 2012, 11:39:36 AM
How do you know whats causing what
I always say: if the problem space is too complex in medicine, focus on the solution space, as the latter is almost certainly simpler.
For instance, for SjS you would probably take Plaquenil, and Plaquenil is safe enough that you could take it regardless, even if the diagnosis was incorrect. So why not just take it?
Our immune system can malfunction in almost innumerable ways, but we have a very limited set of treatments that often are effective for a large subset of the problems. So I find it more practical to focus on the treatment options and not pay attention to what specifically is the problem. It's not always possible to figure out exactly what condition is responsible for a particular manifestation; however, making the distinction is often unnecessary.
Styx
I appreciate your way of thinking on this Styx!
Thanks olm :) I've kind of been forced to think that way since my diagnosis was so difficult. I've learned so much more from watching my symptoms respond to therapy than I have learned from test results.
Though it's always nice to have a solid diagnosis if you can get one!
Styx
I took a few days worth of plaq about 10-12 yrs ago for babesia (similar to malaria). It is another drug that simply "ate" my stomach. So I guess it's a moot point with me. At this time I am not willing to try it again.
Val,
I would def check out another rheumy about the plaquenil issue. It seems the first line medication in most autoimmune diseases. To be honest, we could have numerous autoimmune conditions that we are not even aware of, or they are? No one knows what the heck is really going on in our bodies do they? They say you have sjogrens, when actually, you might have a little of each of them like im sure alot of us really do. I mean like Lupus, scleroderma, so many others? When I went off the plaq after years on it, all my neuro issues seem to start. When I went back on, It didnt really seem to help, and figured the damage was done to my CNS. That is when we started with the big guns like Rituxan and IVIG.
I guess the name brand Plaquenil is expensive, but easier on the stomach and works better as well. I guess some of the generics dont even work?
Gursie
i made an apt wth another rhemy.. january 30th ..first i can get in as a new patient...
should i just keep my dose at 200mg or go back up to 400mg?? will 200mg still keep enough in my system?? i know we cant give doc opinions but jsut generally..iknow some of u only take 200mg...
thanks for hte advice!!!
If you feel ok on the 400mg, would take that. Plaquenil takes along time to kick in usually..up to at least 1 year for most. Now, if your having side effects etc, would cut down to 200mg. Glad you found a new doc. I would keep searching for the best doc for you. It took me years to find mine..but well worth it. Its confusing as well because they all tend to say something different? ha ha. You will know when you really find the right one though..they really seem to know what might be going on and I go by their bedside manner the most.
Gursie
i took 400mg for oever 2 years and now for 1 month have been on 200mg.... i also heard some people just take 200mg ..i cant get into the new doc tho til end of jan... not sure if i should go back up to 400mg as i also started wellbutrin today?
spoke with nurse at my rheumy.. they just said most of her patients are on 200mg .. she said because of my weight to stay at 200mg. i asked if the doc was planning on takingme off completely and she said the notes had indicated that but it depended upon my symptoms..
i guess for now i will stay at 200 until i see the new doc end of jan
thanks for listening.
just don't run out!!
If you're small then that may be the best advice! (200)
thanks.ive got plenty... i weigh 115.. i dont think im that small.. i cant wait til i get into the new doc... 2nd opinion... ahhhh
valene, Just wanted to mention that plaquenil is considered a "mild" drug by some and it is not as strong as the big gun meds. However, it is considered to have a powerful anti-inflammatory effect. About a month after I upped my dose to 400 mgm my fatigue became much less, my brain fog improved considerably and my energy level is much better.
I have heard other talk of this, but I have to say that I was very surprised to have it happen so soon. I think that every day is just a little bit better. I have even been out walking around our place trying to get in shape for my stress test. A few weeks ago I would not have been able to walk. I spent the past 3-4 months pretty much down and around the house from the fatigue. Good luck. Irish
Mind you, I was put on the 200 mgm 1 year ago.
When I started it, I actually noticed feeling better after a few days..amazing how different we all are.
Gursie
I started on 400 in August 2011. He took me to 200 in May of 2012 due to loose bowels. Not really sure if that was the reason or not, but my stomach issues resolved back to constipation. :( Have not seen any drastic changes in symptoms since the reduction, although I am working again and about 8 pm, I turn into a pumpkin. Tired....I weigh 110. Overall, I am functioning much better than I was during the summer of 2011.
Winnie :)
It's good to get the Plaquenil dosing right because the risk of ocular complications increases significantly if you overdose (though the overall odds of complications are still very low). I think all of the patients that developed retinopathy in the recorded literature were overdosing.
I don't know the correct body weight dosages for Plaquenil off hand, though.
Styx