Hello everyone I'm
new.
I was diagnosed with JRA in 2003 and have been on Remicade
ever since. It worked great for me for a while, but now I am not so
sure. Last year I switched over to orencia with TERRIBLE side effects. I
got terrible debilitating migraines for about two months after
getting the orencia and flat out stopped getting anything for my
arthritis. Then in december I went back on Remicade.
In the end of Feb, beginning of March I had been having nerve pain/RA pain in the wrists,
its really hard to tell the diff between them for me. I called my doctor after getting my remicade and told him it just
didn't seem to be working, if anything I felt WORSE. He wanted me to
take tylenol and suck it up. I told him that wasn't happening. So he
put me on Prednisone 40mg. It worked
wonders for the hip pain I was having that was SO bad I couldn't sit
down for more than 5 minutes. But it did nothing for my hands. I
didn't have any real side effects from the prednisone. No excess
energy, no food cravings, nothing.... maybe sweating more than usual.
When I saw him a couple weeks later he really had nothing to say, I was off the Pred and he did x-rays of my hands. He said it was probably joint movement issues, and I should see a hand surgeon. Wrote a script for Lidocaine patches, but my insurance wont cover it without a prior auth. grrr
Well fast forward to my next infusion of Remicade. It did nothing for me except make me sick as all get out. I was hot and cold for days, slept a day or two straight, and felt sick as a dog. He didn't seem to care.
So another week or so later, It's friday and I can hardly move I'm in so much pain. My doc isn't in, but the rhuemy fellow on call was and he put me back on 40mg of prednisone. It didn't do much of anything. By Sunday I was done with the pain, I called the rhuemy fellow on call again and he said I should go to the ER if I was in unbearable pain. So off to the ER I went. They actually took me seriously! I got IV Solumedrol and IV toradol. Talk about a range of emotions from that stuff. I've never had IV steroids. It's crazy! I was so wired and couldn't sleep all night. The Toradol didn't do much for the pain, but made is bearable. They said they could keep me overnight, but I didn't want to so I went home. Well I slept terrible!!!!! I still don't feel great, but a bit better. Guess IV steroids do work for me now though cause I can't stop eating and talking. They also started me on celebrex, but it doesn't seem to be settling with my stomach like most NSAIDS. I'm allergic to all of them it seems. My head is also throbbing. Is that just a side effect of coming off a good dose of IV steroids?
I can actually use my hands now, but they are still pretty painful, I can't hold anything.
I don't know what to do now, I'm not supposed to taper off my oral prednisone. I'm supposed to stay on 40mg and get in touch with my rheumy tomorrow, but I'm so pissed off at him for blowing me off until I get a nasty flair like I've never had before.
Oh and I can't take MTX, I throw up no matter what the dose. So thats not an option for me either.
I am so sorry you are going through all of that. I really hope you can find another RA doc that will work with you better. It is hard finding one that makes a good fit with ya. It took me a couple of tries. I wish I had some great words of wisdom for ya, but, well... my brain I think stopped working a while ago. lol I call it my wonderful world of brain fog. lol I really do hope you are able to find the right answers and improve. I will be thinking of ya. :)
Thanks, I'm just exhausted with this disease. And I have a doctor who thinks it's all in my head or something.
Yep, I'm fed up with him. Finally got a hold of him and he tells me it's not arthritis.
Wow, I definitely think I would go for a second, third, fourth, whatever opinion. That doc doesn't sound like he is a lot of fun.
Hi, and welcome! Something sure doesn't add up about being diagnosed in '03, being on Remicade (and other big drugs) and now... the doctor (RD?) telling you its all in your head? When you've had this disease for 7 years???
FIRE that guy! If he's not an RD, find one. That's what you need to do, and you don't need to fiddle about with a doctor like this one at all! This disease is nothing to ignore; ignoring it can get you into trouble really fast.
May I ask how old you are? I assume someone, (a parent?) was addressing your medical needs when you were first diagnosed? I'm just wondering how long you have been taking care of this yourself and if this guy is the OG who diagnosed and treated you?
Best of luck to you!
Yep, same doc who diagnosed me. My primary care ignored my symptoms for years before sending me elsewhere. So my hands are pretty messed up.
Sad thing is he use to be a great doc, but now he just doesn't care anymore. I don't benefit his research, so I'm no use.
I've been on the Remicade since 04, went off it last summer because of side effects and tried Orencia(with terrible results) and went back to Remicade.
I'm a wimp about needles and wont stick myself, so enbrel and humira are out of the question.
I'm trying to stay on Remicade, but idk. I did finally get him to agree trying Solumedrol with the remicade to lessen the side effects.
Oh and I'm 22.
Remicade didn't work for me. However, I have had much better results with Rituxan. Nice thing it is 2 times every 6 months. It does start to where off on me around month 4 but, not sure insurance would cover more Rituxan. So trying to stick it out with the current schedule. Besides a new doc, Rituxan might be worth looking into. I hope you are doing ok. By, the way, I used to be terrified of needles and thought I could never give myself a shot. Well, I got used to it. lol Never in my wildest dreams did I think I would hear myself say, "shots, no big deal". But, I made it to that point and have been injecting methotrexate for a long time.
lol, I don't blame you on the needle thing. I am such a big baby on so many things. I just won't admit because, I have to keep up my tough mama image. Yeah, right. lol
Ick, I'm really not liking the prednisone. I've only ever been on it twice besides now. I'm down to 20mg a day(10 mg twice a day) and today I feel wicked bloated and gained about 5 lbs in one day..... should I be worried? Or is this normal?
I think gaining weight on prednisone is very normal. I am on a low dose. It has been a long time since I took a higher dose. Right now, I take 10 mg for 7 days, then 7.5 mg for 7 days, then back to my normal 5 mg a day. I seems like I did gain some weight back then. I remember being hungrier too. How long are they keeping you at that dosage?
Well I got my Remicade today with the solumedrol IV. So far *knock on wood* I feel A LOT better after my infusion. But of course I have new issue. My BP is High. My nurse didn't like it at all. Highest was like 150/90. I feel like I'm falling apart at the seams.....
OK, I have decided no more problems for you. Did it work? Well, I am glad you feel better and I really hope the Remicade continues to do well for you. I also hope your blood pressure goes back to normal. I know what you mean about falling apart at the seams. If I am not dealing with Ra,it's fibro, or hearing loss, or getting colds, or nerve damage, etc. lol What to do.
he he well I went to see my primary care today and he thinks it's just the Prednisone causing the semi elevated BP. He wasn't concerned. Course I started coughing like crazy today, so I also told him about that and he thinks I have a Upper respiratory infection.... oh joy!! Gave me cough syrup with codiene(sp) in it and Antibiotics. Filled them both, but have only taken the cough syrup. I HATE antibiotics.
Good cough syrup. That is what I got last time too. The syrup and antibiotics. lol Antibiotics usually give me stomach cramps after a few days. Agghhh OK, I am telling that infection to go away. You have enough to deal with. I do hope you get feeling better.
Ok, so I finally HAD to take the antibiotics. My lungs are on fire from coughing.
I guess the infection didn't listen to me. I shouldn't be surprised, though. Just trying to get my family to listen to me is a challenge. lol I hope that cough and infection clears up quick for you. Is the cough syrup helping?
I hope you have an awesome day anyway.
Ha ha ha, If only my body would listen to me. I'm getting really tired of it. I never get sick or have flairs and all the sudden it's everything at once.
I'm exhausted and can't do anything I want to do.
OK that is funny. At least the pharmacist gave ya a good chuckle, even if he had know idea. lol
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