multiple drug allergies/serum sickness?

Just wondering if anyone else has had problems with this? 

It started with Remicade (Infliximab) which I had a delayed reaction to (serum sickness) but I couldn't get any of my doctors to believe me (GI or Rheumys).  I finally had to go see a specialist who was involved in the Remicade research, who was 4 hours away and very expensive, to get my answers. 

Now it looks like it's happening again with 6 mercaptopurine, the same exact symptoms and of course my doctor (GI) knows nothing about the drugs he prescribes and doesn't know what to do. Of course I'm going to stop taking the drug, see what happens, but 2 drugs now, not related, it's starting to scare me. 

I'm going to go to an allergist, but I'm not sure how much she'll be able to help me as I went to her before for my Remicade reaction and she just gave me pre-meds and said to keep taking it.  

Now my doctor (GI) wants to start me on Methotrexate (which really scares me although I know a lot of you are on it) but the possibility that I may have another reaction scares me to death.  I've decided I'm not going to start taking it until I get some answers.  I'm kind of scared though, my GI has me scared to death about my Crohn's disease, and all the surgeries I've had to have.  Wants me on a maintenance medication no matter what. 

My reactions have been migrating joint pain, starting in the fingers, moving  to the wrists, elbows, ankles, knees, feet.  When I couldn't get any of my doctors to believe me about the reaction to the Remicade, it ended up being the most excruciating pain I'd ever been through, and even once I stoped the drug it took months to go away. Now it's starting all over again. 

Anyway, I was just wondering if anyone else has been through this, has any pearls of wisdom or recommendations.

Thanks for listening.

Hey Vicky,

I think you're right. Either the disease itself or the drugs we've taken for years is messing with our immune systems and it probably manifests differently in everyone.

I never had allergies in my life before, still don't that I know of. Except for the CD, I've always been very healthy (except maybe for mentally, lol, especially lately).

The worst part was that I was afraid to tell my doctor, he didn't really believe me last time until Dr. Targan confirmed it. This time he really doesn't know what to do either. I told him I have to stop taking the drug, I can't let the joint pain get as bad as last time, sigh.

This is really just one more thing to get through, hopefully stopping the drug will stop the pain. And of course my tests all came back fine, nothing shows up, lol.

Hey, when are your tests? Is your pain any better? I wonder if your pain will get better now you're off the drugs? I'll say a prayer for you.

I have had the same med problems. Remicade was wonderful, until liver enzymes went thru the roof, induced lupus etc. Then took Imuran, it cause terrible pancreatitis so off that and back on 6mp....volitile vomiting.....It has been determined by my GI, who is Remicade specialists (involved with the research), that I can not have 6mp, or and future TNF's (Humaria, Enbrel). It obviously has something to do with how the liver, pancreas reacts to these immunosuppressant drugs. I also have AS so I too have severe back, and joint pain....especially my ankles. I currently take no meds....none left to take. The people at the Remicade research say that usually once you have a reaction to a TNF med, you will generally develop allergies to other meds as well??????? This is what has happened to me. Tried to go back to maintenance meds after Remi reaction....but now allergic to all of them.

Tinglebell,

The diagnosis is tentative until you stop the medication, then when the symptoms stop, you know for sure (although the longer you're on the drug, the longer it takes for the symptoms to dissipate, it took 4 months after I stopped the Remicade).

I've never had any arthritis pain before in my life (except for maybe a twinge or two), and I've had this disease for most of my life. I also had the Remicade antibody test and my antibodies were extremely high. There's also a whole time line you go by. Second exposure to the drug along with delayed reaction, the nature of the pain meaning location, being migratory, etc. I was told by the specialist that my symptoms were classic signs of serum sickness and to get off the drug. It worked, the pain went away.

Trae,

I'm still doing research, and may have to go see my specialist again, but I have the feeling this all started with Remicade. I was leery of going on the 6mp because my liver enzymes have been all over the place, but the funny thing is that right now they're normal, go figure.

I ordered a book I found that was co-authored by my specialist (Inflammatory Bowel Disease from Bench to Bedside, Second Edition, a little light reading while I'm sitting with my father-in-law during Chemo tomorrow, lol), hopefully it will have some answers in it, if not, I'll have to bite the bullet and make another appointment with him (after I mortgage my house to pay for it, lol).

I'm going to go to an allergist also, but the tests won't necessarily show a reaction, the only way to see it will be to take the drug in a controlled manner and I'm not sure I want to do that. I have seen research showing that it's possible to desensitize to 6mp, but not sure what that entails and I may be better off just trying the Methotrexate.

This is so frustrating. The only other thing I've ever been allergic to is IV Iodine, and that was a reaction I had 30 years ago, nothing since.

I long for the good old days when GI's didn't want to see me in between surgeries, when remission was a break from the doctors. Now we know better, we know I should be proactive, try to prevent another flare, but my body won't cooperate.

Gail,

I don't have any large bowel left, only about 8 feet of small. I read up on Methotrexate, and I'm not thrilled about it, but 6mp isn't recommended for liver problems either. One of the problems is we're not sure if I have liver problems or not, probably won't know unless or until there's damage.

Never heard of mellenium, will have to look it up. I got the book I ordered, lots of info, a little overwhelming so far, but good info. It was printed in 2005 so is a little dated regarding the latest drugs, but very comprehensive.

No, I won't replace the 6mp with prednisone (and I won't go back on pred for the joint pain, it didn't work for me last time). I'm supposed to be on maintenance drugs and I'm a firm believer that prednisone shouldn't be taken long term, I feel I'd be better off with no drugs. We're still not sure what the abdominal pain was all about, but it's mostly gone now, I'm wondering if it was just some healing that I was going through from my surgery. My doctor wants me on a maintenance drug, but I'm not sure the risks are worth it, and up until 2 years ago both 6MP and MTX hadn't been proven effective maintenance drugs after 2 years post op, but I'll keep researching.

My FIL is doing a little better. The oncologist is surprised that he's responding so well to the chemo, the percentages were pretty slim. We're hoping to buy him some time to get on a new drug that's supposed to be pretty good (but also with low success percentages), but takes time to work, who knows? He still can't take anything by mouth and is very depressed about it. Not sure if buying time is the right thing if he can't get control of his tongue/throat back.

You're so sweet to ask and to respond to my rants. I hope you're getting your issues under control. I really don't think this is arthritis unless somehow the Remicade caused it. It's also multi-jointed and peripheral which is a little more rare, with no inflammation showing up in the blood tests.

Keep me posted on what the doctor thinks is causing your pains, I hope prednisone works for you.

One thing that I found out is there are 2 types of peripheral arthropathies, Type I and Type II. Type II mainly affects small joints, and in many joints at the same time. Type II arthritis includes treatment side effects which may include the effects of corticosteroid withdrawal, osteonecrosis, AZA induced arthropathy and infliximab related lupus-like syndrome. I have had AZA (6MP) induced and infliximab realated lupus-like syndrome. Maybe this is what I've been looking for. It's a start.

Hi So are you researching the meds for CD that don't have the comlpications of Type 2 problems ? Have you had any testing like scans to test if you have any arth.? Was reading about food factors and rheumatoid arth. They have a list of some foods that might trigger it, Milk, wheat, sugar, corn. soy, some people have problems with tomatoes, potatoes, eggplant, paprika, green and red peppers, chili pepppers,.As in CD rheum. arth the immune cells attack joint tissue and cause inflamation. Gee I'am really getting interested in you Judy ha ha . lol gail

Hello Everyone!

   I am new to the board, but am at a loss for what to do...I started Remicade infusions in September (due to Crohn's Disease that wasn't responding to other drugs like Entocort, Pentasa, Prednizone, etc. I have had 4 now, and they are cancelling my 5th due to a reaction to the Remicade. During the last infusion, I had a horrible reaction, just felt like I was on fire, burning up all over, and felt like I would pass out...like everything was going backwards in a tunnel. They stopped, flushed with saline, and gave me enough benadryl to kill a horse. That's been a month ago. (Four week ago almost to the day) Now suddenly, my Liver Enzymes are through the roof, and I have excrutiating pain in every joint I have it feels like. I don't think recovering from a hysterectomy was this bad. I can't hardly use my hands at all today. Every turn of my wrist, or strike of a finger just feels like I'm going to break a bone. My neck (trouble swallowing/hurting, shoulders, hip, elbows, ankles, you name it, even a severe toothache. I've read people say they had trouble even going to the bathroom, I can fully understand. Trying to put clothes on is horrendous! I have a Rheumatologist, and a Gasterologist working with my primary doctor. They are doing the Lupus test, and the Rheumatoid test, as well as the hepatitis tests. I am positive now that it is a reaction to Remicade! What can I do??? Ugh! This is soooo painful, and they say because of my liver problem not to take anti inflammatory meds, aspirin, etc.

Thank you in advance for any response...I am at the end of my rope! I know I'm not alone, but sometimes it feels so lonely out here!

Help!

Diva

I know your not taking prednisone, but I had migrating joint pain in my hands, knees, arm, and feet for a week when I started it and I was screaming in pain and was given oxy to handle it. I'm tapering off the pred now due to sleeping issues, bad acne, headaches but overall my CD is better (and that's all my GI cares about it seems). Don't be afraid of side effects we all get them or most of us do. Some can tolerate, some can't.  I never had arthritis until this yr, and oddly started just before the pred, but it was never horrbily bad until I started the pred but thankfully went away after the first week.

As for an allergy to meds, I would only be concerned if your lips/face swell up, can't breathe, extremely dizzy, etc
Those are the usual effects for an allergy. My doc it an idiot somewhat and I know more than him it seems, also thanks to this forum :)

I don't know too much about 6MP or Remicade as I never taken them but I do hope something works out for you. I know these drugs are tough, and it's quite a rollercoaster ride. Hang on :)

I went into anaphylactic shock with remi, it was my fourth infusion, and as with all my other allergic reactions, no lip, face swelling,
no tingling just Bam!!! I truly believe with this particular "family" of drugs. No one can rely on text book reactions.
Judy I wish you luck with your research. I for one, would welcome some answers, as right now I feel like c***. God Bless.

Most Remicade research now mentions the adverse reactions of migratory, polyarticular joint pain. Some call it Lupus-Like Syndrome, some call it serum sickness-like, now I believe they call it a hypersensitivity or delayed hypersensitivity reaction (depending on when it starts).


For the joint pain, you could take steroids, they say it should help the pain but it didn't for me, although I only had one shot in the doctors office. I took Celebrex which helped more than anythiing else (but not completely, still had to take Vicodin in the evenings when it was worse). It's supposed to be one of the safer drugs for IBD, not sure about the liver.

You really need to have your HACA levels checked (an antibody to the Remicade/Infliximab), the test is called the Prometheus Infliximab HACA test. Some patients (13%) develop low titers of HACA which can be (pre) treated with steroids or 6mp/Imuran.

Have you ever taken this drug in the past? That's usually a sign that you're having a delayed hypersensitivity reaction which are cause by a rapid induction of very high titers of HACA, this happens in about 25% of patients who have taken the drug previously. These patients should not receive subsequent infusions because the high-titer HACA interfere the the TNF binding capacity of Remicade (meaning you're wasting your time and money because it won't work anymore, not to mention the side effects).

I would ask for the test, and make decisions from there. In the mean time, pain management is top priority, but I think that when it gets this bad, nothing's going to work 100%. If you do decide to stop taking the Remicade, it will take a while for the pain to dissipate, could take months. Just trying to prepare you because you're going to need pain management to get you through.

Yeah, I was put on Remicade pretty quickly this time around and started having problems right from the start. I hope that doctors start rethinking the top down protocol with all the new reactions being reported now that more people have taken the drugs.

Hi Tommy Welcome to HW and glad you are here. I rub my fingers and toes when they cramp as soon as it starts. Judy why don't we do a poll to see how many there are that have had joint pain after Rem. I guess the only trouble with that is we were not on Rem. alone but for myself I also was on other meds when I was taking it so how does a person say for certain what is causing the problems .Those that took pred. ,or Imuran with Rem it would certainly be hard to know what is triggering what. We all know that pred. needs to be taken with calcium or at least I think it is supposed to be. I do not have the joint pains I had now ,but who knows if they will return. Certainly might be worth seeing how many of us do have pain in the joints after starting Rem. ALso a factor to consider here is how much damage does the CD inflamation, do to the body with the inflamation and weight lost we expericence as well as the lost to important vitamins and minerals at times when we are sick. . lol gail