Cycle of Symptoms tied to Remicade Treatment

[insalacosm]

Hello - I'm new to this forum and wanted to share my experiences and get your thoughts on recent symptoms which the doctors can't seem to figure out. I had my first round of Remicade treatment (three infusions) in 2001 to help with a bad flare-up that resulted in a fistula, did well for a few years, and then after a moderate flare up in 2003, I've been getting Remicade on a routine basis. Up until 2010 I was getting my infusions every 10 weeks and was syptom free; I was also on a small amount of 6-MP and taking Pentasa.

I was feeling so great that my doctor suggested I stop taking 6-MP, which I did. Then in the winter of 2010/2011 I got some very bad upper back/shoulder pain which I thought was from carrying my kids around too much. The pain went away after my next treatment but came back as my next treatment neared. My doctor and I still didn't attribute this to Crohn's or Remicade and thought it was just a result of muscle pull or something. My GI system was still doing great so my doctor suggested I cease the Remicade treatments and see how I do. We'll, about 12 weeks after my treatment my upper back and shoulder pain got so bad I had to be put on pain killers and was seeing a PT to help losen the muscles.

My primary doctor described my syptoms as Fiber Malaysia and referred me to a rheumatoid arthritis (RA) doctor. The RA doc did all types of lab checks and when I told him I thought there was a connection to Remicade, he didn't agree and thought it was a symptom of Crohn's and recommended I get back on Remicade. I really felt the Remicade was causing the problems but was so desperate for relief that I had my infusion; it was about 16 weeks after the previous treatment. Within a couple days I felt great again!

However, over the past 6 months I've been an awful cycle where at about 5 weeks after my infusion I start getting the shoulder pain. The pain isn't as bad as it was when I attempted to stop Remicade and can be managed with a couple Tylenol, but it still impacts my way of life. What's also strange is that for the last two cyles, I've been getting really bad acne at the six week mark - large deep pimples on my scalp, get an acne rash on my arms and back, and developed a stye in each eye. My dermatologist diagnosed it as infected hair folicles and prescribed an anti-biotic which cleared it up quickly. The symptoms then went away following the next Remicade treatment, but then when I hit week 6 again, the pain and pimples came back. I've also been getting a lot of warts which my GI doc attributes to immune supression from the Remicade.

My next treatment is next week and I'm sure it will provide temporary relief but this cycle of symptoms is very bothersome. I keep wondering if it is Crohn's causing these symptoms or is it a side effect of Remicade? I had my GI doc run the Prometheus test and everything came back normal. I also had an MRI on my Upper GI and everything looks good there; due for a colonoscopy in a few weeks. The doctors have been unable to pin-point the cause of my symptoms, althought the RA still believes it's a symptom of Crohns which isn't being fully controlled. I'm tempted to attempt going off Remicade and trying Humira, but I really don't want these aweful symptoms to get worse.

I'm currently on Pentasa and Remicade only, and I do take a multi-vitamin.

Thanks for any feedback.
Steve

diagnosed with Crohn's in 1992.

 

[kllyeve]

Abdominal pain can refer pain to different parts of the body. I know that I have had shoulder pain in my right shoulder that I now think is referred pain from my ileum which is where my Crohn's is located.

 

[SarahAnne]

I also get a lot of referred pain, sometimes it is hard to know what is actually causing problems. I had pain for a few months that I was sure was Crohn's related, turns out I had a kidney stone blocking my ureter.

It sounds like the Remicade is helping somewhat, a lot of people are on a 6 week schedule when they notice symptoms returning before the 8 wks. Some people who can't tolerate Remi find they do better on Humira, but both drugs are TNF blockers and will suppress the immune system, just something to keep in mind if you do decide to talk to your doctor about switching biologics.

Good luck, I hope you find a solution and get some relief!!

 

[insalacosm]

Hi - Thanks for the feedback. The more I think this through, the more I'm thinking the syptoms I'm experiencing are from a minor flare causing poor absorption of nutrients. I'm going to do some more research and ask my doc to check nutrient levels the next time I get my labs done.
thanks!
Steve

 

[SarahAnne]

Steve - Check out the sticky David put up in the Diet, Fitness, and Supplements thread. It's titled "Vitamin and Mineral Deficiencies." It has helped me tremendously. If you have absorption issues then it may be a very easy fix. Obviously don't start taking anything without proper labs or talking to your doctor. I'm convinced that a lot of my issues are deficiency related now, just not sure how to remedy it as I don't have a terminal ileum anymore and unsure where some of the vits & mins are absorbed.

 

[FindingLitz]

I am starting Remicade any day (as soon as the insurance accepts it). I have deferred paid throughout my entire body - imagine that irritated feeling in the back of your neck when you get really mad? I have that throughout all of my joints - yup, all of them down to my fingers and toes. I'm praying Remicade helps me and quick...

 

[Roxymusic]

I'm wondering if the shoulder issues aren't some kind of arthritis that the remicade is helping, it is used for rheumatoid. The skin issues could be remicade caused. Seems like most meds are feast or famine. My third dose of remicade was yesterday and have not experienced anything really attributable except positive progress.

 

[Cbail]

It's not your Crohn's, it's the drug. Doctor's won't admit this either because of pride or ignorance. I had extreme joint pain after 6 months on Remicade. I'm a 25 y/o fireman, never had joint pain. Rufused the next Remicade infusion and what do you know........gone.

 

[insalacosm]

Hello - it's about time that I update this! Anyway, I had my last dose of remicade in January, then had the worst muscle pain, contracted strep throat, then post strep gn, and the rash spread throughout my body - all shortly after my treatment. I went back to the docs and told them that remicade will kill me if I stay on it so told them I was done with it. They reluctantly agreed that my body needs to detox. The post strep gn cleared up in a few weeks (had blood in urine). The rash was diagnosed as pustular psoriasis (very rare) but was controlled with a topical cortosteroid.

So it has now been 10 months since my last treatment and I feel great! The joint pain does come back a little if I over carry heavy things for too long but otherwise everything is much more stable now. Every problem I've had is immune related, and my thought is that remicade just upset that balance too much. I was in it for ten years and my body had enough.

I now take a multi vitamin and pentasa. I do notice that if I don't take the full dosage of pentasa, some of the symptoms come back at a mild degree. This tells me that my crohns is likely manifesting itself with these other conditions. I haven't been back to the doctors since the winter but plan to go back to get their thoughts on things and attempt to educate them on some of the risks related to Remicade.
Steve

 

[Cbail]

So glad to hear you're doing better Great story. When I refused the treatment, my GI pated me on the back and said "good luck" and walked out of the office. This was suppose to be the best GI center in the country. Jill Roberts Center for Digestive Disease at Columia Presbeterian in Manhattan. I wasn't mad at her. I realized that drugs was all she could do for me. Remicade takes up to 7 months to completely clear the body(depending on the person) so it took a while for my symptoms to disappear.

 

[insalacosm]

Thanks. Good to hear your doing good too! I'm actually moving to the Netherlands (from DC) for a year or two so will be interesting to hear the perspectives of the docs over there. Hoping the stress doesn't bring me down, so far so good.
Steve