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Disease-modifying antirheumatic drugs


pamyla
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Hi everyone,

My doctor wants to put me on one of the DMARD's (seems I have some autoimmune stuff going on). I am supposed to research and come to my appointment ready to give input on which drug I would prefer to try. So, I'm wondering if any of you have ever been on one of these drugs? Any experiences on what worked/didn't work for you? How did it affect pots?

Choices include Plaquenil, methotrexate, and possibly Enbrel or Humira (although I think the last 2 are only covered by insurance after one of the first 2 has failed).

Thanks!

Pam

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pam -

i have heard of some of the meds you mentioned but don't know a thing about them so can't be of any help in that regard. but...i just wanted to wish you luck & also to say congrats for finding a doc who seems so open to your input...that's awesome. good luck with the research & with starting the new med (whichever one it may be!)

:-)melissa

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Hi

I take plaquenil for suspected Lupus or Rheumatoid Arthritis (on top of POTS or maybe even the ultimate cause of it). I have found good results with the medicine although it has been very slow going. I started plaquenil in March and I was told that it would be at least six months until I saw noticeable results. I have noticed that my endurance is much longer and that I am taking less tylenol. I have been able to hike and walk up some more stairs than before. However, I still have relapses and am still experiencing all of my symptoms. I am feeling like they are more under control though, much more. In fact, I even recently kayaked 5 miles! Before plaquenil and neurontin, my sports limit was 15 minutes on a recumbent bike. (I have to admit I was towed by our guide for a mile and half of those 5 miles, but I tried to paddle at the same time) I am experiencing some bad symptoms right now as a result of waiting on a hot line (in a wheelchair) in the airport when my plane was delayed a few days ago. It is a major relapse for me, but I have hope that plaquenil will make things better again.

Note: you must get check-ups for possible retina damage every six months (it is extremely rare). Also, plaquenil is the only DMARD used with pregnancy and the others could make it difficult to ever have children. I am not sure if you are in that place in your life or are ever thinking about it, but I thought I would let you know as it was a thought of mine.

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Melissa, thanks for the support :) I really appreciate it! And yes, having an open-minded doctor helps alot.

Leah, thanks for sharing your experience with me. Plaquenil is the one I'm leaning towards, so it's great to hear that it's helped you :) You sound a lot like me with the exercise. I think I can manage 2-3 min on the bike, although about 15 min with just walking. The doctor did mention the pregnancy stuff to me. There's that other drug (Arava?) which she tells me works well but can cause bad birth defects. For now I'm gonna stay away from it.

Got one more question for you - was their an adjustment period at first when you took it? Any bad side effects? Hope your symptoms improve soon.

Thanks again!

Pam

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Pamyla,

I took Plaquenil for roughly five months. At first I was a little nauseated, but this improved after about three weeks. I took one pill at first, then increased to two pills -- I can't remember the exact dosage, but I recall it being pretty standard -- after about two weeks.

I have some autoimmune disease symptoms but have a negative ANA and don't quite have enough of the lupus symptoms to be diagnosed. But when I was pregnant and developed preeclampsia, plus my daughter developed severe growth restriction, my doctors believed that these two conditions could only be caused by an autoimmune disease, and that maybe in my case, it will unveil itself down the road. My POTS symptoms also came on as a result of the pregnancy, so it all seems intertwined.

Having said that, I didn't feel much of a difference while on the Plaquenil. I may have had a bit less swelling in my body for some reason. But otherwise, I was the same. I discontinued it because I didn't feel there was any reason to stay on it.

Hope this drug works well for you. Also, I wanted to mention that although Enbrel is contraindicated for pregnancy, I know two women who are taking it while pregnant right now (in low doses). They both are having healthy pregnancies so far. I am not encouraging you to do that, but just wanted you to know that sometimes, people choose to take a medication even though it's contraindicated. You may want to discuss this with your specialist.

Amy

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Hi Amy, thanks for the information. I have heard that the main issue with plaquenil is that is only works for about half of people who take it. I guess I won't know if I'm a responder until I try it. Enbrel actually sounds like a great choice, but I have to try something first in order to have insurance approve it. That's good to know that others have been able to take it while pregnant.

Thanks again :)

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