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

[gurs]

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

[olmphoto2]

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.

[valene2009]

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..

[olmphoto2]

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.]

[valene2009]

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

[Dry1000]

Plaquenil definitely improved my dry mouth and eyes.

[gurs]

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

[valene2009]

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

[Tivia]

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?

[Styx]

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

[olmphoto2]

I appreciate your way of thinking on this Styx!

[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

[jazzlover]

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.

[gurs]

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

[valene2009]

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!!!