Side Effects from Remicade, 6MP, Humira

Sorry to hear about all that. Not fun. Early days for me and Remicade - just a few weeks - but no side effects at all yet, as far as I'm aware. Some people are on it for years without any. I'm still not sure I'd be happy on it for many years personally.

The array of side effects listed are unlikely to have been related to the use of Remicade.

You list rapid weight gain and water retention as side effects. They are generally attributed to Prednisone use, as are most of the other ones you list. The effects can linger even after Prednisone is ceased.

Two flare-ups in 11 years is quite mild in UC terms. Hopefully you will stay well.

I've never had any side effects (3 years on remicade, and 2 years on 6mp) and several others who post here regularly have been on remicade much, much longer than me and have had the same remission without side effects

I know how you feel. After my last flareup it became apparent that my meds alone weren't as effective. So I started smoking cigarettes again and have been in remission ever since. It's been almost 4 years, so far so good, with only the minor side effect that I sometimes get winded climbing stairs.

NiceCupOfTea said...
I'm sorry for what you went though, but you do seem determined to blame the Remicade for everything which happened to you.

Actually, I blame the UC for being bedridden for 5 1/2 months, in excruciating pain when going to the bathroom, throwing up when trying to go to the bathroom, not making it to the bathroom, becoming anemic from so much blood loss, ...

I blame the steroids for eating up tissue (including bone mass).

I blame the Remicade for making me so tired and out-of-breath that I couldn't exercise, for making my feet hurt so much that I had trouble walking, and for giving me convulsions, which I hope I never get again. I also blame Remicade for hurting my lymphatic system, which has increased my risk of getting cancer.

And I blame myself for not listening to my body when my colon started to flare.

I just hope that being on a strict Low Fodmap, anti-infammatory diet and destressing will help remove much of the damage that has been done to my body from this disease and the UC medications.

Post Edited (subduedjoy) : 8/12/2016 2:23:35 PM (GMT-6)

I normally stay out of the fray of these discussion deliberately, however, minimizing the side effects is not useful to those of us who get them. Lialda caused drug induced lupus for me (only one cited case that I and my rheumy could find), Imuran made me extremely ill including a fever and caused me to have to lay down in the middle of my kitchen floor and crawl back to my office while considering calling 911 because I felt so ill. So, please, do not minimize the side effects that these medications can cause. Yes, I fully agree, those who get them are a small percent, but for those of us who do get them they are serious. Many of you who have never had the side effects cannot fathom how bad they really are. When I had drug induced lupus I could barely walk, I couldn't pour myself a cup of coffee, I could not open a door handle, I could barely shower myself or wipe myself after using the bathroom. I would sit and cry and think I can't continue my life like this. While most of those who get drug induced lupus have their symptoms resolve within days or week of discontinuing the meds my symptoms continued for nearly a year after stopping the meds. The lupus antibodies are slowly returning to the negative range but it has taken over 19 months. And since I'm on my soap box, I think it's great that several of the moderators have found remission with medications but please understand that some of us, myself included, are scared to death of taking biologics due to the side effects. Yes they are a small percentage, but I don't have a good track record with medicine.

Sorry for the rant, but I feel like sometimes this forum is prejudiced. The comments get very heated and personal against anyone who is anti-med.

Note, I updated my signature line to reflect the change in lupus diagnosis. Originally diagnosed with drug induced lupus, typically goes away within days or week of discontinuing meds. I had issues for a period longer than normal, rheumy changed diagnosis to systemic lupus, symptoms stopped, redid blood work, some of the lupus antibodies are now testing in the negative range and the others went down. Rheumy thinks it is drug induced and just not a typical case. Pending retest of antibodies in November for confirmation.

As you have said, the people that have experienced bad side effects often have an extremely understandable strong emotional reaction about it. Of course their own view of the drug will be negative as it didn't work for them. I don't think iPoop is trying to invalidate or minimize your experience or anybody else's experiences - he's trying to reassure people, because many people are on the drugs without issue, or with minor issues that are not really a problem, and as well as that they may have potentially fantastic results on the drug. I think it's only fair to warn people of the risks in the context of the benefits, just as it is only fair to warn people of the benefits in the context of the risks. Applying our best guess of probabilities to the statistics, based on research and studies, is very important to allow people to understand how rare the side effects are. To make posts that recommend people not going on the drug and telling stories about horrible experiences they have had is - again, while understandable if you've had that experience - not always the most helpful thing for the person who wants to learn more info about the drug, even if it seems like it could be.

Mrs. Brady said...
Sorry for the rant, but I feel like sometimes this forum is prejudiced. The comments get very heated and personal against anyone who is anti-med.

That's the way I'd expect things to be (not that personal attacks are ever very helpful). I think this forum's brilliant ... I really like it. Partly because there are heated discussions, and I think that the fact people are having that over a topic such as this disease is really good. The different perspectives are exactly what we need. I hope nobody on this forum feels like what they have to say is not appreciated, even if others disagree (iPoop with subduedjoy, most people with the miracle healing and magnetism quackery), the fact we have the differences of opinion and that we can argue it out is really good. I think that kind of debate and discussion does help anybody looking for advice or information as a broad range of perspectives is always useful - and I doubt anybody here, or anywhere for that matter, has all the answers. Subduedjoy, for example, brings the unusual perspective of somebody who is managing their UC 'naturally', and brings great advice about diet and an important-to-represent (whether you agree or not!) anti-med stance. If that were the only voice on the forum I think it would be too unbalanced, just as it would be if any one voice on the forum took over. But when each person chips in with their view, this forum works really well. If you feel it's prejudiced / too unbalanced in one direction, post with your views more often!

Post Edited (~ chicken wings ~) : 8/12/2016 4:09:24 PM (GMT-6)

Bottom line is symptoms and side effects from drugs such as Remicade do occur but they are in the minority. People who go on these drugs should be well aware of the side effects or their doctors aren't doing a very good job. SOMETIMES THE BENEFITS OUTWEIGH THE RISK. Just like surgery for people with UC.

I was on Remi for a while. Zero side effects. If it had worked I'd probably still be on it. My mom has been on Remicade for 10 years to treat her RA. Zero issues. She's 85 and her blood work is better than mine. She'd be crippled without it. No one wants to be on these meds but jeez they can be life savers. No sense scaring the crap out of people on the fence about using these meds as treatment.

I have had some very bad reactions to meds myself in the past - luckily nothing permanent - and I have also had the experience of doctors minimising my side-effects (the main offenders being mesalazine and SSRIs - yes GIs, a thing called mesalazine intolerance really exists; there have even been studies published about it). I realise I have come perilously close to doing the same thing myself and for that I apologise. Side-effects suck; serious side-effects suck even more.

But that said, I do think there is a tendency for people to go overboard with blaming the meds; it's almost like it's easier to blame the meds and downplay other factors. For example, I had a wretched time of it last winter: I had a cold which lingered for two months, cold sore after cold sore, and an eye infection. That's not normal for me and if I'd been on a biologic or immunesuppressant I'd have probably jumped to blame them - but I wasn't, so I couldn't blame the meds.

Sometimes it's the meds which are to blame, but sometimes it isn't. Sometimes it's your disease, other people spreading germs, sheer bad luck, etc. At the end of the day, you probably wouldn't be in perfect physical health if you weren't on any medication - particularly if you have active IBD going on.

subduedjoy said...
People said the same thing 10 years ago about steroids.

Said what about steroids? That they were safe?

If so, no, it was recognised that steroids were dangerous decades ago. Steroids were only invented in the 1950s; initially they were hailed as a miracle cure, but doctors soon learnt that they were anything but.

One thing about me is that I don't take on board much what people say about things, whether they're good or bad. I never became scared of Remicade, 'cos all the chatter about side-effects and cancer never really sank in with me. Obviously I'd rather not be on medication for the rest of my life; anybody would. But that's less to do with fear and more to do with just not wanting to have a chronic illness.

It's interesting because people who respond well to remicade seem to get away with little to no side effects. I didn't respond to the drug at all and I had AWFUL side effects. My joints would tighten up in the middle of the night and I couldn't sleep because of it, I couldn't stay still, I couldn't move around, no matter what I did, I was in excruciating pain. It felt like a charlie horse that lasted the entire night throughout my knees and legs. It was like my knees buckled up and I could barely move. Then in the day time it wasn't so bad - but you couldn't live longterm with the type of pain I was dealing with. My GI blamed it on the UC, but it was always happening in relation to getting the meds. The longer from the infusion, the less pain. I also had a positive ANA while on remicade so Iam sure it's all related. Though, my GI said it was borderline and didn't mean anything - i know it did, I had been checked before and never had even borderline. The thing that pushed me over the edge was the very and strange blood infection that sent me to the ICU and eventually led to septic shock. That is all in the prescribing packet if you read it. No one ever told me that could happen. All in all, everyone is right, unless you're really unlucky or have some kind of backwards experience like i had, you're likely to do well on these medications.