went down from 400mg to 200mg plaquenil... slowing progression ? thanks

[valene2009]

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

[sjenny]

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.

[Styx]

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

[gurs]

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

[olmphoto2]

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.

[Styx]

gurs, that was my experience as well; nevertheless, the best evidence to date says it works, albeit not very well.

[Tivia]

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?

[Styx]

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).

[gurs]

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

[olmphoto2]

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.]

[Styx]

"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.

[Tivia]

"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?

[Styx]

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

[Nancy60]

"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

[Aquarius]

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.