did they ever give you a definitive DX of RA? i know who've some sort of IBD, but which one again? my apologies for not remembering, but i do remember however your dealing with a definitive diagnosis.
ya know...you can never go wrong with a medication that has been around A LONG TIME! i say go for it!
yes, you do have to go for regular BW to check liver enzymes & i think they still do regular every 6 month eye exams. but those are good to do anyway.
i have to ask you something. i'm not doubting your docs practice or theories, but to me it seems like giving these TNFs only a few months time to see if they work a little hasty? 6 months is a short time. is it you decision to stop and switch meds?
when i was on Enbrel a few years ago, it took about 4 to 5 months to feel effects that were beneficial.
good luck with the plaquenil! when do you start?
the best to you!
Thanks for the info. Good to know about the tummy rumblings. My rheumy told me to take two plaquenil/day, but start off with one a day for about a week so as not to upset my system. Perhaps he was referring to the GI issues related to plaquenil.
Erin, I do have an official dx of RA. But neither my rheumatololgist, my GI doctor, nor myself actually believe I have RA. I have a positive RF with the symmetrical joint pain and raynaud's. No swelling or deformities that are typically associated with RA. I also have bad upper GI problems. In the past, I've had lower GI issues, which led to a colonoscopy last August. They found ulcers throughout my colon, but biopsies were negative for IBD. Nevertheless, IBD is also a possible issue--hasn't been ruled out, despite the fact that my most recent colonoscopy (Feb) was clear. GI doctor and rheumatologist feel that the medicines I've been on (sulfasalazine and Humira) would have taken care of the ulcers. We just don't know what caused the ulcers to begin with. I've always suspected that I was experiencing early lupus or MCTD (the polymyositis associated with MCTD can cause GI inflammation), but my bloodwork has not caught up with my symptoms yet. My mom had a positive RF and a negative ANA for years before being diagnosed with SLE.
I've also read, Erin, that enbrel can take up to 6 months (in fact, my rheumatologist has told me that). I didn't question him further about taking me off it in another 6 weeks, but I suspect that maybe my bloodwork isn't optimal (perhaps not abnormal, but borderline), and continuing with the enbrel, if it's not doing anything, is probably not worth the risk.
Quite honestly, it freaks me out to think I could be developing the same thing my mother died from (not that I would die from it, but when you grow up seeing your mother in and out of ICU, you might get that impression). The only person I can really talk to about my fears is my husband (and he is wonderful). My siblings are even more freaked about the possibility of my having MCTD/lupus than I am, and I would never in a million years mention it to my father.
I feel like I'm getting too caught up in this diagnostic stuff, though. Truly, as my rheumatologist reminded me yesterday, the bottom line is I don't feel well. I would do better to place my energies in symptom reduction than trying to figure out what disease I'm developing (although that certainly is important in the long run).
Oops, didn't know I turned this into a huge vent. Sorry--and thanks if you've bothered to read this!
oh, i understand. sounds very very complicated.
but overall, i do hope you find some relief with something at least.
hang in there,
Well, it does sound like your rhuemy is wanting to help you and make you feel better and that is awesome.
I can understand your fears and how all this can stress you out. I hope you find good results with plaquenil. I can't remember how long it took for it to kick in with me, I don't think that long - but eventually, I "tested it" by not taking it for a few day, and by day 4 I was MISERABLE and soon as I went back on it, I was better after a few doses.
I believe it is a DMARD. My rhuemy, who is waiting, trying, and pushing to get me on Enbrel (not that I'm against it completely, but my health just doesn't seem to want to cooperate - long story) SAYS that, though it is helping, it does not stop the degeneration process like a TNF inhibitor does (remicade, enbrel, and humira - I think a 4th one recently came out on the market as well.)
I still get flares, have to watch it, and am still affected by weather and what not, but usually in a much more tolerable manner and I"m often better with my swelling, stiffness, and pain on a more regular basis. Which, in turn, makes me feel better, sleep better, and you know how that domino effect works. When I "tested' how well it worked, my joints very noticably and quickly stiffened up and slowed down, then pain followed soon afterwards.
Oh, so you're currently taking plaquenil, Camama? I think if enbrel starts working for me, my doctor will leave me on enbrel and plaquenil at the same time. I read somewhere, not sure where now, that enbrel doesn't work as well for lupus arthritis. Plaquenil, on the other hand, does. Enbrel works better for rheumatoid arthritis. Given that RA is more destructive than lupus arthritis, they're both inflammatory arthritides. Not sure why enbrel would work for one, but not the other.
I know that orencia was just approved for RA, and my rheumatologist told me there's another one that was approved at the same time. Both orencia and this other drug are IV transfusion like remicade, though. He wanted me to exhaust the injectables first (humira, enbrel, and kinaret). He said we would try kinaret next, but the drawback is that it is a daily injection, as opposed to weekly. I'll think positive, though, and maybe plaquenil will work just fine by itself.
I still hurt today, but I'm in better spirits!
Keep up those spirits! It helps!
Yes, I'm still on plaquenil. I started last April, I believe.
I have the 50mg, 1 time a week shots for ENbrel sitting in my fridge waiting to be started. Partially, I'm nervous to start because I had a serious problem with my health after being on Remicade. Partially I'm just waiting for my health to (G-d willing) stabalize, it seems I can't go 2 months w/o getting some form of sinus, lung, etc. infection.
Kids calling...gotta go.
Well, I will contest that NSAIDs did NOTHING for me. Plaquenil is only one of 3 meds that I actually could witness the difference - and they were DMARDs and a biological. Everyone reacts differntly, as you know, to meds - but, I hope you find it as helpful as I have.
I will say, because I now have issues with the muscles and tissues as well as the joints, I take Motrin and it helps with that - and that can be taken as-needed rather than the Rx anti-inflammatories that need to be taken daily in order to be in your system and work.
I'd say the same, about 4-6 weeks before I was sure I saw an improvement. It was about 6 months before I realized how much better I was doing and decided to test the med and go off it for a week. I was in pain within 4-5 days. Once I went back on it, it did kick right back in within a week or so. The stomach upset was gone within 2 weeks.
I believe I've been tested for deficiencies in vitamins and they were not found. I could be mistaken, though.
Well, I've been on plaquenil for almost a year now. My bloodwork appears to be pretty normal now; however, I doubt whether plaquenil had anything to do with it. I was on enbrel, and added mtx, as well. Perhaps it was a combination of all three? Now I'm off the enbrel, and just on mtx and plaquenil. I miss the enbrel terribly (my joints are definitely hurting), but I'm grateful to still have the mtx and plaquenil. Who knows? Maybe the plaquenil is doing more than I think....
Your words are very reassurring. I am to start Plaquenil soon. I have read that that the side effects weren't as bad the other DMARD's. I am waiting 2 weeks until I am out of school for the summer then I will give it a try. Until then I am taking Pred to get by. Do you have RA? I have all of the symptoms but I don't have the RA marker. Does Plaquenil reduced the SED rate and CRP levels in your blood? Do you need to continue taking Prednisone. I really would like to quit taking it.