how do they know Plaquenil slows the progression of sjogrens??

[valene2009]

ok so my rheumy says Plaquenil slows the progression of sjogrens. are there studies to prove this and are they done on humans or lab rats??  just curious ... like most on here i need to find a new Rheumy... (( she doesnt answer my questions or offer any help.thanks guys and gals..

[Scottietottie]

Hi 

I know that my blood tests looked a lot more normal after 2 years on Plaquenil and that my Schirmer's test also showed an improvement. My rheumy attributed both things to Plaquenil. If it wasn't disease modifying - why would they prescribe it?

Take care - Scottie 

[Sooki]

I don't know the definitive answer to your question, but this is my take on disease progression.  When my rheumy says it has been observed to slow the progression of the disease, I think he means that it won't just get rid of the joint pain, it will lessen the inflammatory response so that numerous symptoms will decrease.  There aren't hard and fast measures to determine disease progression.  If your existing symptoms get worse and you get new ones, you can say your disease is progressing.  If your symptoms quiet down and you're not getting new ones, it seems like your disease progression is slowing down.  When I was first put on plaquenil, he didn't also give me other drugs right away because he thought that many of my symptoms might improve and he wanted to see if that was true before adding other drugs. (It was.)   Later on, when I started getting skin rashes from the sun, he said that sun exposure would increase disease progression, meaning I could expect more joint pain, fatigue, etc. as well as the skin rash, from any sun exposure I got (I covered up quick).  Does this make sense? 

[valene2009]

thanks.. i just dont feel any better on it... have taken it over a year..my blood work was actually worse. lol. o well... thanks again

[Sooki]

Sorry - here's my last post with paragraphs:

I don't know the definitive answer to your question, but this is my take on disease progression.  When my rheumy says it has been observed to slow the progression of the disease, I think he means that it won't just get rid of the joint pain, it will lessen the inflammatory response so that numerous symptoms will decrease.

There aren't hard and fast measures to determine disease progression.  If your existing symptoms get worse and you get new ones, you can say your disease is progressing.

If your symptoms quiet down and you're not getting new ones, it seems like your disease progression is slowing down.

When I was first put on plaquenil, he didn't also give me other drugs right away because he thought that many of my symptoms might improve and he wanted to see if that was true before adding other drugs. (It was.)

Late on, when I started getting skin rashes from sunlight, he said that sun exposure would increase disease progression, meaning I could expect more joint pain, fatigue, etc. as well as the skin rash, from any sun exposure I got (I covered up quick.). 

Does this make sense?  And it doesn't work for everybody.....

[valene2009]

thanks for paragraphing for me.. Is that a word?  lol...
what else can we take besides plaquenil and methotrexate??

[Nancy60]

I went off plaquenil for awhile because of side effects (ear ringing) and got so much worse, I didn't realize how much it was actually doing for me.  I started back on it maybe 6 months later and am so thankful for it, You might not realize how it is helping you. 

I think Prednisone is used sometimes, but they prefer to use Methotrexate or Plaquenil because of all the bad long term effects of Prednisone.  Arent' they also using Rituxin sometimes with SJS?

Nancy

[valene2009]

Nancy..thanks. do you mind telling me what side effects you had when you got off the plaquenli?  my main issues are ext dry eyes and then mouth.. i have sore shoulders but i dont even take aleve daily for that.. i am mostly bone dry everywhere and cant be in the heat and have trouble exercising cause i get so dehyrated and dont sweat anymore

[ohiolady]

Valene,

I see a rheumatologist at Cleveland Clinic and she told me Plaquenil would help with joint pain and it is used widely for Sjogrens but the studies do not show it helps with the dryness issues.  Now, I know others will say it has helped with their dryness and it may, but this is what I was told.  She did not say it slowed the progression.  She said it is an anti-inflammatory.

Anna

[Sooki]

When the plaquenil couldn't control all my symptoms (I started the skin rash and was dx'ed with Lupus as well as Sjogren's), the rheumy added CellCept to the mix at the lowest dose.  That has been really helpful.  I've started sweating again, lightly.  My dryness is slightly better.  The joint pain and sun reaction are much less.  Fatigue, hard to say, it comes and goes but maybe better.  I don't know if CellCept is used for Sjogren's alone, but I'm happy not to start down the methotrexate/biologics route until I have to.

[gold55]

I've heard only positive things about Plaquenil and how it slows progression.....many have commented it has brought back some of their salivary gland and eye gland function.  My question is how early do you have to start it to get back some of what you've lost.  I'm not in a lot of pain now and I'm not fatigued to any point of extreme.  On dry days I want to start the drug but on better days I keep thinking I can hold off.  My Rheumy wants me to start it if I get any more joint pain....she doesn't push the fact of beginning plaquenil for dryness only.  Any comments on this please?

[Diane54]

Ohio Lady ............my Rheummy is at the CC also......are you at the main clinic or a suburban one?

[4Kids]

My rheumy said there is no evidence to support that Plaquenil slows down progression, she said that is an old way of thinking. She also said there is no evidence to support it helps dryness but I argued that people here say it does. For the record she asked if I thought Restasis was really helping at all, did it really do anything for me, really? I answered if everythibg worked like Restasis I would be a very happy, normal person. I just started Plaquenil last week for hair loss. I really hope it works!

[lolo1979]

There is at least one study that showed plaquenil helped dryness:

http://www.ncbi.nlm.nih.gov/pubmed/19433433

I can't stand these rheumatologists who offer us no hope of improvement and are "doom and gloom". If that's how your rheumy makes you feel, find a new one asap!!!  Also, do not let these rheumies downplay the significance of dryness. Dryness is a big deal. It interferes with the way we feel, our quality of life, etc.  These rheumies who say they will only give you DMARD's for joint pain --- why?? 

I told my rheumy yesterday that I do not want to stand idle and wait for my immune system to continue attacking my moisture glands until I am so miserable I can't stand it.  She agreed, and is willing to be my partner in treatment and do her best to help me get better.  That is what a good rheumy does.  I can tell you I didn't start with a good rheumy. My last one told me there was nothing he could do for me, that immunosuppressents wouldn't help, and to never get pregnant again.  Oh thanks, why don't I just go ahead and check out then? Needless to say, I found my new doc and couldn't be happier. 

[ohiolady]

Diane,

I go to CCF at Lorain.  I avoid the main campus.

Anna