Post Edited (Flopsie) : 8/19/2005 11:21:16 AM (GMT-6)
Thanks for the welcome and feedback! I had rash, itching, hives, flushing, low BP and nausea during an infusion about 6 months ago and since then they have given me the solumedrol and benedryl prior to infusing the remicade and they infuse that very slowly, takes longer than most people apparently. I have been informing my nurse and rheumy about the myalgias, exacerbated joint pain and fatigue for some time, keeping a diary, and they did not think it was related to the remicade. It develops about 24 hours after the infusion. HOwever, now that it has happened 3 times I really feel it is related but: has the RA worsened? (labs don't show this), is it the drug not working? antibodies to remicade? fibromyalgia now on top of the RA? I don't know and they don't either.
All I know is that I don't feel well, and they don't know what to do about it. The nurse (who is really very nice) told me once that "you just need to get used to not feeling well all the time". Prior to starting on Remicade I was on Humira for 3-4 months and still had joint pain but I did not feel as bad as I do now a year later with these other symptoms. I am thinking of going back to that, maybe taking it with MTX this time. I also wonder if you can go back to remicade if you go off it.
Has anyone been on remicade and then gone to Enbrel with good results? For some reason my rheumy did not think that would work for me because the Humira didn't work entirely.
Thanks Ides. Sorry about your plight also. I will check the Crohn's forum.
I will definitely discuss those tests you mentioned with my physician. I had asked her about the antibody reaction but she never tested me for that. Nor the lupus. In fact most of my post-remicade discomfort is really tenosynovitis after the muscle aches go away. I have had to receive numerous cortisone injections for TS in my wrists, elbows and knees since I have been on remicade but never before on the other meds I tried. It feels different from the joint pain but extremely painful anyway and to top it off I can't knit . My rheumy told me that RA patients have trouble with tenosynovitis and the RA is probably at the root of it.
I have been on remicade for exactly a year, got the first infusion reactions when they upped the dose about treatment 5 and have required solumedrol/benedryl ever since. THat was scary, flushing, trouble breathing, hives. I almost quit then. Since then the reactions come after 24 hours, about the time the solumedrol wears off I imagine. Remicade does relieve my joint pain for a while (about 4 weeks)but they come back which is why I go every 5 weeks for infusions, then have to put up with the other stuff after the infusion. So I get about 3 good weeks for each infusion.
So with the reaction you have and the remicade induced lupus antibodies they still give you remicade? This is why I don't know what decision to make. I am afraid that if I go off it and back to the humira then I will flare like crazy.
Thanks for your help, Knit
THanks stray for that bit about being able to resume remicade. That is a load off my mind.
Ides, I googled for enthesopathy and read about it... that is exactly how I would describe my tendosynovitis, it is major swelling, redness, and pain where the tendon connects to the bone. My feet and ankles have been really bad. I have not been on canes or walker like you but sure don't want to go there either but I would have sold my pets for a wheelchair last fall. Last Nov., after I started the remicade, maybe 4 or so weeks after the 4th tx, I woke up in the night unable to move at all without searing pain in most of my large joints and hands, knees being the worse. Also felt sick all over in muscles etc. I;ll spare you all the details but it was not pretty. Then I got stuck in the tub where I went for some relief since up to then I had no strong pain meds at home. I am tall, 6'1" and my hubby is about the same size. We were a team that night let me tell you. Ended up on prednisone which helped slowly and have been on it ever since, and the remicade. I can see glimpses of that flare in my nightmares so I know what you mean about not wanting to go back. It was my first ever major pain, including 2 labor and c-section experiences. There is nothing like that bone pain. I am a nurse (mostly maternity stuff) and didn't really know that.
I have modified my life so much for the RA. I have slowly realized that I have to do that. Some days I do alot, and pay for it later... others I do almost nothing. I do a very simple yoga video when I can. I can walk my dog some days. I can knit some days with a timer set for no more than 15 minutes at a time. I am blessed with 2 good teenage daughters as well as a husband. I can't work because even though I have good days I have bad days and my attendence would not be regular. I guess I should apply for disablity but I don't know, so many people have trouble.
I thank you for your support everyone, it is a blessing to me!!! I hope you feel good this week.
Ides, been there with the toilet stuff too, knees were horrible and very necessary to lower and raise onself. Yes, now I remember that shoulder pain being part of the experience. Maybe I will stay on the remicade. I feel pretty good for the past few days. My dose was on 8/11. That's bad about the prednisone for you. I have gained about 10 lbs in 9 months, eating less than I usually do. It's because of lack of exercise I guess. THe guilt gets me so hard, about husband, kids, job, money. I NEVER expected to be unable to function in life at this age. Laughed about those mailings you get for long term care insurance etc. Why did you send that to me? I have always done everything for myself too, just like you said.
I have a friend with crohns that I have known for 14 years. SHe has not had a major flare in all that time and can't take prednisone either since she was on it so much earlier in life. It was very bad when she was pregnant, had to have surgery then. She has told me how lucky she is that hers is a mild case.
You know, all these autoimmune tortures are so interconnected. I have had allergies all of my 48 yr life (even when they weren't popular but "weird"), irritable bowel which they thought was crohn's but never could make the diagnostic criteria, asthma (not real bad), thyroiditis, then the RA came after I totalled my car in the snow a couple of years ago. I am glad that remicade helps your asthma, one less thing to worry about.
Good luck with the remicade, I'll am wishing you well.
Post Edited (CaMama) : 8/25/2005 12:08:33 AM (GMT-6)
Camama, you have really been thru it!! I am glad you shared that. How in the world can you stay up til 2am, I barely make it to 10pm!! YOu are starting Enbrel, have you tried Humira? Did it not work for you? I tought it was working for me but then it didn't any more. Maybe I just got a bad batch and switched to Remicade for nothing. THat did cross my mind. Which is why I consider going back to it.
I do get liver panel done each visit because I take MTX. Also blood counts, sed rate. They have been "normal" even when I feel like crap with swollen joints. So much for lab tests. Soooo, I guess that is why they think the remicade is working for me. My rheumatologist just kept increasing the dosage and decreasing the intervals til we got to this point. The last time I went for my infusion I asked if we could go down a bit on the dose due to the previous post infusion reaction. THe answer was no just let me know if it happens again and use more benedryl after you go home. WHich I did. After I woke up from 6 days of post remicade/benedryl fog I called and explained the symptoms and heard the dreaded words:"I don't know what is causing your symptoms, I don't have your chart at this office...you could try enbrel if you want...or go back to the humira, let me know what you want to do." I am still stalling. I am afraid to leave remicade cause my joints do feel better (maybe 50%) for a while after I get over the post infusion effects of myalgia and joint flares. I used to make decisions very easily, could see the right path so to speak. Not now. No one can do it for me I know. My husband's eyes just glaze over when I start talking about it. He would do anything for me but doesn't know what to say anymore about my symptoms or worries. I try not to talk to much about how I feel to my kids, they can tell. THat's just me.
I know what you mean about missing out on your kids lives and like I said before, being cheated. My oldest just left for college last week and I could not help her really prepare. She wanted to spare me the stress of having to do it. Now she is there and needs stuff she doesn't have but I could have told her she would need if I hadn't been so out of it. SHe might not have listened anyway though.
I have really been feeling wrong for years. When mine were the age of your kids I had IBS, which GI thought was crohns but the scopes did not prove it. So they decided it was "stress" and working too many late shifts, having little kids and every other cliche they could give me to get me out of the office. I knew where every bathroom was in town and they learned them all too. It was definitely real not stress.
Hang in there, and I hope the enbrel works for you. Knit
From your lips to God's ears, Knit!
This site has been such a life saver for me too - I was feeling so helpless and lost when I found this site as well as finally at the end of my rope!
Ides, I am so glad you feel better!!! Do NOT feel guilty. It encourages me to continue with Remicade after those side effects wear off and I feel like I do today, about 3 weeks after treatment. It is such a roller coaster though, like you said. Truly love/hate. And those side effects worry me so when they are occurring.
Do something fun today since you feel better. Just don't chop any vegetables, that always gets my tendons going!
i agree. hearing people's testimonies of getting results from these meds is very encouraging. with a disease that is so very hard to diagnose, treat and control...it's provides a lot of hope in this long and arduous battle.
many of us, including myself, go through a laundry list of treatments only to find that many indeed fail. but somewhere out there, eventually somewhere down the line...there is that right magic combo that will get us back to a good level of functioning.
so i say "anyone having anything GOOD to say should shout it with all their heart".
because i want to be doing the same.
take care to all