Hi, this is my first post!! I have a question about remicade reactions. I have RA and have been thru the list of meds like everyone else. I certainly don't have RA to the point of some people who post here but I did have a major flare in Nov 2004 and went out of work (no disability insurance ) Currently have been on Remicade/MTX/5 of pred for a year, the remicade in increasing doses at decreasing intervals, 7 vials every 5 weeks now. I also receive solumedrol and benedryl prior to the infusion each time since I had a reaction during an infusion a while ago.
My question is this: After the past 3 infusions I have had a week's worth of fatigue, nausea, and muscle pain in most of my body for 7 days followed by seemingly random joint flares in knees, elbows and wrists. THen things seem to calm down and I feel moderately crappy for the rest of the month, fatigue, lack of stamina, random joint flares if I do too much with that joint. My rheumy told me to try benedryl for the myalgias and that helped some, maybe because it sedated me? Is this remicade reaction common? Do I have antibodies and its not working anymore? I thought remicade was supposed to help rather than cause other problems to deal with. My rheumy's partner told me now I probably have fibro and that some people develop fibro on remicade. Regular rheumy told me she did not know what is causing the symptoms and that it was up to me to decide to stay on remicade or not. THat I could try going back to Humira or try the Enbrel. I don't know what to choose. I know different people have different results. Maybe I just am expecting too much of the drugs and just need to learn to deal with the RA.
Hi Knit, Welcome to the Arthritis board. I can not help you with your questions, but there are a lot of wonderful supportive people that will come along and try to help you I am sure.
Glad to have you,
flopsie
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hey there Knit, there are several types of reactions from remicade infusion therapies...what have the nurses or doctors said? have you told them about the reactions to Remicade? even though you are recieving treatment for RA perhaps it is still not under control yet. do you have any other underlying conditions that would make you feel really fatigued?? i was never on remicade, i wish i had some more personal info/advise. maybe with time an answer will come to you or maybe this will pass. this is hard and fustrating...we're all rooting for you! sincerely, erin
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.
Just like there are many different people in the world (that act the same) that respond differently to different circumstances, there are different meds that are developed to act similarly that different people respond to differently. Does that make sense? Under the group of meds called biological inhibitors there are many different meds that ultimately bring about the same response but they act a little different to get to the same spot. I know of someone who tried humira, then remicade and made a very sucessful jump to enbrel and is now almost symptom free on an enbrel/mtx combo. Just because the humira didn't help you doesn't mean that the enbrel won't. A lot of the people here have tried a combination of all three at some point. I myself have only been on the enbrel. I have tried alot of other meds before that (arava, mtx, ketoprofen; now on mobicox and plaquenil on top of the enbrel)
Talk to your dr. about it somemore. In my opinion (and I stress it is only my opinion) I see no reason why you couldn't try the enbrel. I do agree with you though on your symptoms. They probably are related to the remicade infusions. Some peoples bodies don't respond well to the remicade. I found with me that I couldn't take mtx because of similar symtoms to what you are descibing. I finally switched rheumy's (first one said if the meds are working why play around with them) and he said that if the side effects were affecting my quality of life then we needed to change them. He is a firm believer in finding the right drug for the right person and he basis it on what give the person the best quality of life. If the side effects are too bad there are always other options out there to try.
I hope that you find some sort of relief from this. Fight for what you want. Your QUALITY of life counts for a lot.
You are in my prayers. Oreo
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Thanks again. It is really great to talk to people about this who understand.
I have read and read and read the drug info about biologics and reactions and combinations and am so frustrated that I have bought into the hope, fought the ins. co. to pay for remicade, tried the med and now may have to give it up because it did not really work after all, in fact I feel worse. And I have only been diagnosed 3 years but this has changed my life so much. ..and we just packed our oldest off to college yesterday which I had to miss because of knowing my body could not take the trip. I feel cheated. THere I said it. I hate cheaters.
My symptoms are definitely not gone. I just got remicade last week and have painful knees, elbows and wrists now that the myalgias are gone. I talked to my rheumy last Thurs. and am supposed to call her again on Monday to let her know what I decide. I will keep fighting for what I need. Since reading the info in this forum, including many other threads I realize are still things to try.
I also realize that there are people who are alot worse off than me who still maintain such positive attitudes about life and have hope and are thankful to be able to get up and go to the computer. It so helps to know that.
Knitnut, I receive Remicade infusions for Crohn's Disease and spondyloarthropathy with enthesopathy [SpA-E]. The SpA-E is a type of arthritis associated with Crohn's. The enthesopathy means that when my disease flares my tendons get inflamed where they insert into the bone. At times the inflammation has been so severe that the tendons spontaneously tear or rupture.
I initially had a GREAT response to Remicade. I was getting infusions every 8 weeks after the 0-2-6 initial loading doses. Suddenly, at 4 weeks after the infusions, my joints would begin to ache a lot and my tendons would flare up again. I developed arthritis type pains in joints that had previously not hurt.
My GI and rheumatologist have both examined me and ordered tests to determine what was happening. My GI has told me repeatedly that onset of joint pain 3-10 days following a Remicade infusion is a reaction to the Remicade. He treats this by seeing if premedicating with prednisone before the infusion does the trick. The test they should run is the HACA (Human Anti-Chimeric Antibody). This tests blood for the antibodies that develop to the murine protein in Remicade. These antibodies are the ones that usually cause the reaction 3-10 days following the infusion.
Since this was not my problem, I was getting the joint pain 4 weeks after the infusions, they needed to see what was up. My rheummy ordered tests. Fourteen percent of people that get Remicade develop antibodies seen in lupus. This is called Remicade induced lupus if you actually get symptoms of the disease. The test is to see if you have developed anti-dsDNA antibodies. This is what has happened to me.
I hope this info helps you. There are lots of us on the Crohn's Forum that take Remicade. If you have other Remicade specific questions you need help with, come on over and post there. You are sure to get more replies than you want - LOL! All the best to you - Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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.
Knit, My rheummy is following me closely. I get 8 tubes of blood drawn every month to test the status of the positive ant-dsDNA antibodies. So far the titers are positive but very low. This is the reaction seen in the clinical trials. Whether I actually have Remicade induced lupus is unknown. My rheummy admitted he does not know. My GI said I didn't. The problem is that the symptoms of lupus are so similiar to the diseases I already have. Joint pain can present very differently among the diseases but sometimes it is hard to differentiate when I fell plain old crappy. I have developed periodic rashes that the rheummy wants biopsied to help him make a diagnosis. Problem is when I saw the dermatologist, I got a PA, and she never even looked at me.
I have chosen to continue receiving Remicade. The reason is two-fold. My rheummy and GI both say it is ok as long as I am followed and get my blood work drawn exactly on schedule. The other reason is something I can only explain as a gut reaction. When I was talking to my GI on Thursday about my fears about this lupus thing he said, "Well, stop getting Remicade and see what happens to your Crohn's and joints." My immediate response, without forethought was, "I cannot bear to think of that."
Before they got my joints and enthesopathy under control with the Remicade I was walking first with one cane, then two canes, and then a walker. The rheummy said I should buy the walker instead of rent because it looked like this was going to be an on-going problem. I was unable to drive, shop, do minimal household chores. I could not get out of bed without assistance nor could I dress without help.
I am NOT going back there! I have always been an active do-everything type of gal. I cannot do everything I used to. I can shop for groceries and cook dinner and drive my car. And on good days, I can go walking on the mountain and smell the flowers.
Enbrel might work on my joints but it does nothing for the GI issues of Crohn's Disease according to both my rheummy and GI. Humira is not approved for CD or AS [ankylosing spondylitis which SpA-E is a cousin of]. Rheummy is trying to get me through until it is approved for one or the other since I qualify under either disease.
Knit, keep me updated on what you decide. I'll check back here later to see if you have more to discuss. Ides, your sister in the Remicade woes
Hi Knit, wanted to let you know, yes, you can go off the Remicade and then go back on it. I have been on it going on three yrs for crohns. I had a terrible reaction on my 3rd infusion, they stopped it, gave me IV Soluable Medrol & Benadryl. Waited awhile, resumed the Remicade at a slower rate and I did fine. I went off of it for six months, had to go back on it, since I have to have pre-meds prior to infusions I had no problem. My gi says if you are off of it 6 months, you should be given pre-meds to ward off any possible reaction, and I am living proof of that.
So, you you can try something else and if it doesn't work go back on Remicade. Good luck...Susie
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.
Knit, Yes, the pain of enthesitis can be very nasty and immobilizing. During the worst of my flares, my husband had to help me on and off the toilet. And since the shoulder tendons all were inflamed too, I could not wipe. The first time in 29 years of marriage I had to ask him to do that.
I understand about doing so much in a day that you pay later. I have learned that lesson over and over. My husband is constantly reminding me to not over-do. But I have SO much guilt about what he has to do now that I can't. I know I should not be guilty but at times I cannot help myself.
Going for Remicade tomorrow. It's been 5.5 weeks since the last one. I just cannot wait any longer. My rheummy says I can have it as often as every 4 weeks but he would like me to stretch to 6 if I can. He is concerned about the lupus antibody. As it stands now I get 6mg/kg and call the infusion center when I want to get it.
I cannot take prednisone unless I have a life threatening need. I have avascular necrosis in both femoral heads. Specialists all say it is from my numerous times on prednisone for my asthma. BTW, my asthma has totally cleared since I started the Remicade. Interesting, huh?
Keep in touch, Knit. I feel like you know what I am talking about in terms of the pain. It is very hard to describe to people. --Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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.
Ides, you gave me a lot of info on Remicade I was unaware of. Thank you.
Knit, 7 vials of remicade every 5 weeks is pretty intense. I thought they didn't even give that much and have found that more than 5 vials ended up making things worse.
My siutation w/Remicade was different than yours, but I wanted to share in case I can give you other things to think about. I had trouble with methotrexate and felt rotten, tired, foggy and had a lot of breathing/chest problems on it. When I was on Remicade (solo for the first 15 months) I did great in the beginning. But last Fall I started feeling under the weather and basically "strange" - unable to cope and felt that the world was burying me alive. It was soon followed by severe fatigue, dizziness and then infections. My liver enzymes had gone up and then spent the last 7 months on and off antibiotics for various infections. Has your doctor done a metabolic panel on you to check your liver? I was also starting to have infusion reaction - hives, itchy, sore throat, swollen eyes...then I started having horrible flares afterwards as well. They gave me Plaqunil to take daily and started solumederol and Zyrtex (Rx allergy med) as premed. It helped a lot, but I ended up stopping the Remicade before I could really test how much it would help in the long run.
My last infusion was May 1st. I got pneumonia 3 weeks later. Since the end of June I have been illness free (knock on wood) - though my joints aren't exactly happy - and my liver enzymes are finally back to normal. I should be starting Enbrel in the next week or so. As to trying the 3rd biological drug - my doctors tell me that though they are all similar, they are all different enough where one may work where the other 2 fail. I believe a 4th biological is in trial testing right now. As they put it, "you never know and you won't know unless you try it."
My children are 5 1/2 and 4 and I feel they got the short end of the stick for a mother. I've been sick in bed a lot the last 4 years since having my son. I haven't been able to do much with them and now they are starting school tomorrow. I've recently applied to disability since I've lost 3 jobs because I can never stay healthy enough to stick with a position, I end up in bed or in the hospital.
Sorry to make this so long. I am not trying to write a pity letter - I just wanted to give you another side of the reactions to think about as well as tell you that you are not alone in how you feel physcially and mentally with all this.
Take care and I wish you all the best in finding a successful solution.
**
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
Knit, I don't think it was 2 a.m. my time.....I'm on the west coast. However, I've been having some severe sleeping issues for about a month now, so I sometimes get up in the middle of the night and log on. I'm a mess lately.
After my son, I was having some intestinal troubles myself...they did numerous tests, but concluded that it was not chrons or ulcerative colitis, but what they were calling microscopic colitis caused by the psoriatic arthritis, just another autoimmune problem like my liver, bladder, and all these oh-so-fun problems! Yeah. Remicade did clear it up quite nicely - but now that I'm off it, I'm not sure what's going to happen. I had some issues when I had a flare, but (knock on wood) it hasn't been a daily occurance since before Remicade. Since you are now dealing with RA, I can't help but wonder if your problem was autoimmune releated.
I'm sure your daughter will listen to you now and get what she needs she knows you love her and I'm sure she understands your situation even though it may seem like she doesn't. My mom had a lot of health issues when I was younger, it stunk for me, but it was a fact of life I accepted and didn't hold a grudge against her for it. The stinker in her situation was, some of them could have been avoided if the doctors just listened to her in the first place, some other issues turned out to be freak food allergies that she JUST found out about, if you can believe it!
Hi ladies! I came across you all quite by accident. And I must confess I am drawn to you because not many others have experience with this rollercoaster of treatment. I had my Remicade Tuesday. This is the 2nd one since I found out I might have either drug induced lupus or lupus outright. First time, I felt no difference after the infusion than all the previous ones.
Not so this time. First off I had a reaction during the infusion. Sudden onset headache, epigastric pain, and sharp increase in BP. Benadryl and Tylenol and then after a 30 minute stoppage, the infusion continued. Since Tuesday, the headache has not entirely gone away. It's a vice grip pain on the skull. Usually by the 3rd day after the infusion I have some relief from my spondyloarthritis symptoms. Not this time. In fact, the day AFTER my infusion they came on full force accompanied by a wonderful lipful of aphthous ulcers.
I am depressed. I think the Remicade isn't working. Are all these pains a lupus-type reaction? Whatever.... This is getting really OLD... Thanks for listening to my mindless rant.
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
Ides, I'm sorry to hear about this. I, too, was going through some turmoil accepting the fact I had to stop Remicade....now that I"m off it, I know it is for the best - I was just getting SO sick on it. It was the same with Methotrexate when I took that - it just dragged my body down so much. Now, I'm back to disable parking, limping and waddling around and having to stay pretty sedentary on the spur of a moment. I hope that Enbrel does me some good when I finally start.
) Currently have been on Remicade/MTX/5 of pred for a year, the remicade in increasing doses at decreasing intervals, 7 vials every 5 weeks now. I also receive solumedrol and benedryl prior to the infusion each time since I had a reaction during an infusion a while ago. 
. My rheumy told me that RA patients have trouble with tenosynovitis and the RA is probably at the root of it. 
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. 
Remicade did clear it up quite nicely - but now that I'm off it, I'm not sure what's going to happen. I had some issues when I had a flare, but (knock on wood) it hasn't been a daily occurance since before Remicade. Since you are now dealing with RA, I can't help but wonder if your problem was autoimmune releated.