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Posted 5/26/2016 4:22 PM (GMT 0)
Hi Everyone,

I will try to keep this short as possible but apologize in advance if long winded. blush

My Husband has been on Remicade for about 2 1/2 years now and is experiencing severe joint pain that stars about 4 weeks after the infusion and as we get closer to his next infusion get worse and happens daily. We have seen the GI and the plan now is to increase his Remicade to 10mg/kg and bump up to every 7 weeks (vs 5mg/kg every 8 weeks); the thought being that as he goes the level of Remicade in his system is being metabolized to quick and none left come next infusion. Fingers crossed that this gets him some relief.

The issue I have is the "why??". I know that many UC'ers experience joint pain and usually corresponds with a flare up etc... My husband has been in clinical remission for about a year now and bowels seem regular, so what would this reaction be from? too much inflammation in his body? would he be in a flare if not on Remicade? he has cut out gluten and dairy, should there be more?

Appreciate any thoughts/advice on the "why" and what can we do smilewinkgrin

Thank you in advance
UCWIFE1142
Posted 5/26/2016 5:41 PM (GMT 0)
There are often autoimmune consequences outside the colon. Joint pain is common. It sounds like inflammation is ramping up as the Remicade depletes. Maybe the inflammation in the colon is not enough to give symptoms, but some inflammation in the joints is.
Posted 5/26/2016 6:00 PM (GMT 0)
I doubt it but has your husband been tested for Remicade antibodies? It usually happens during or right after an infusion.

They can also test his blood to see if he is at a therapeutic level with the remicade.

I take Sulfasalazine to help with Joint pain, it is an old 5asa drug and can also help with UC.
Posted 5/26/2016 6:11 PM (GMT 0)
Where is his joint pain located? Does he experience any swelling as well?

I've been on Remicade for a few years and I experience joint pain/swelling in my hands and feet.
Have noticed it happens when I consume larger amounts of sugar.
I have a soft spot for my wife's Christmas cut-out cookies, and Cadbury's chocolate eggs give me some trouble.
Sugar is know as a culprit in causing inflammation.
Posted 5/26/2016 6:29 PM (GMT 0)
Thanks all for your suggestions :)

ks1905 - this was what I was originally thinking, but the GI thinks because he gets relief for at least 4 weeks that its more likely that he just doesn't have enough in his system, but they are testing him for that also :)

Jay79 - The sugar thing is extremely interesting as we have been talking about that being an issue!! time to eliminate and see if that helps. The pain changes from one place to the next (shoulder, hands, wrists, knees etc) and does swell a bit. As he gets closer to his treatment the frequency goes up to where is a new spot everyday! he has been using NSAID when needed (naproxen). Do you use anything for the pain?

Thanks
UCWIFE1142
Posted 5/26/2016 7:01 PM (GMT 0)
I'll use Advil for the pain/swelling. Not really supposed to use NSAIDs, so I'm careful with how often and always take with food.
My pain/swelling usually lasts for 3 days and then moves on to another joint.

Have experienced this in my ankles, knees and shoulders. For a while it seemed to be following scar tissue around. But don't have any scare tissue in my hands or feet that I know of.
Posted 5/26/2016 7:11 PM (GMT 0)
No NSAIDs, they can cause a flare or make them worse. Use Tylenol or Sulfasalazine.

If there is some swelling you could ask for Lasix (water pill).

Is your husband taking a good probiotic like Culturelle or Florastor?
Posted 5/26/2016 7:23 PM (GMT 0)
He will only use NSAID when he has to because pain level is very bad! Tylenol does nothing for him... I have ordered some Biofreeze in hopes it might help.

The only thing he is on is the Remicade but have been looking into what other supplements etc that he should be on... or at least try. With the Remicade he feels pretty good other than these pains... but I know there is more going on in there that Remicade is "covering up" any reaction gut wise he may be having...

Thanks
Posted 5/26/2016 7:37 PM (GMT 0)
Has he seen a Rheumatologist? It might be worth an appointment.

The NSAIDs could actually be making it worse, causing him to flare and then as a secondary manifestation causing him joint pain.
Posted 5/26/2016 7:57 PM (GMT 0)
HUH never even considered that ks1902... that would be awful but could explain the back to back pain in the joints... unfortunate as seems to be the only thing that will "break" the inflammation and pain... confused

I am going to look into an appointment with a Rheumatologist!!

thanks
UCWIFE1142
Posted 5/29/2016 4:27 PM (GMT 0)
Affirming rec to see a great rheumatologist as next step. Ask them to do full range of diagnostic labs to see if there are other things going on. It's also critical to determine if there's inflammation. GIs typically don't have this expertise.

Lots of us have had joint pains as arthritis and/or extra intestinal manifestations of UC. Some of us got joint pains while on remicade and it helped to shorten the interval between infusions. A very small percentage of us got severe 'traveling' pains (they moved around, and became debilitating) while on remicade; and it was deemed an adverse effect so had to stop. There's a very long thread called 'severe joint pain, stopped remicade so sad) as we puzzled through this a couple of years ago. I was the OP but several others had it too, and you can see the various tests we did, including seeing neurologists.

The interesting thing at this point is that I again have joint pains (with some inflammation) while on Entyvio. There's no documentation of this drug correlating with joint pain, unlike with remicade. I think for me it may be EIMs of UC since Entyvio is working in a gut-specific way. But still puzzling over this...
Posted 5/29/2016 5:01 PM (GMT 0)
I have a lot of joint pain and the only drug that relieves it is Tramadol
It's a prescription drug and a real miracle drug for me
I have been on Entyvio for almost 2 years now and this drug has also been a lifesaver for me turn
Posted 6/2/2016 6:51 PM (GMT 0)
UPDATE!

Thanks Countprof, we went to the GI who feels that it was due to not having enough remi in his system come the next infusion time... so we upped the amount and he will now go every 6 weeks. GI seemed hopeful and so were we, just had to wait to the next infusion.

Well that was last Friday and had a whole week (almost) of no pain which was great... until this morning when he woke up with his pinky finger in pain and his knee. Has gotten very bad as today has gone on and he mentioned (although may not be related) that he is not urinating much and drinking a lot of water...

As a side note he has been gluten and dairy free for a while now and on Tuesday he tried goat cheese to see if bothered him and last night he had a couple of beers at a buddies house... I immediately went to the idea that it was an inflammatory to the gluten or dairy... thoughts??

so bummed, as we were really hoping to have a little while without these pains. We are expecting our first child in Sept and really would like some answers before she arrive :-)

I also have read (still going through) the other post you suggested Countprof and its great info but extremely overwhelming... thanks so much for you support of not just me but this forum... I am not sure where I would turn if not here.

the GI docs here don't seem to care to much and we feel alone in the dark most of the time... I will have to request a rheumatologist...

Thanks again.. trying to be hopeful... pregnancy hormones don't help smilewinkgrin
Posted 6/3/2016 7:54 AM (GMT 0)
Glad to hear it's been helpful. I've learned that for me it has been very overwhelming at times and exhausting to keep searching for information. Hours upon hours of searching widely.... Over many months....
But I also did this because I realized we have to be our own fierce advocates at times, and knowledge is power. Each of us has a different set of dynamics in play, but I think there are some keep takeaways, like finding a great rheumatologist can be essential to getting through these desperate times. (I was fortunate to find one who perseveres diagnostically.) And I also found value in seeking other medical opinions. (Downside was it was very time consuming, and docs varied in terms of how much they were keeping up with emerging literature in their fields). My GI is great but I think we benefit from teams of complementary expertise. One doctor doesn't have the whole picture & state of the art knowledge.
Just one more thought - for what it's worth. I found that I had to reset my system entirely. Fresh start. Complete lifestyle change. Was steadfast in eating very simply until we could figure out what made my system worse. I did plain broth, rice, etc. and lots of water with electrolytes. Found few protein sources I could tolerate. For many months. I can't conceive of adding alcohol etc when I was trying flaring and trying to diagnose what's what. Normal life came to a grinding halt in order to take this seriously and respect that my body was fundamentally not functional. So I got clean in my diet and added back in one thing at a time very very gradually. It has worked but it has been a long haul of constant vigilance over the years. That's just been my experience. Honoring my body and being patient. A food journal helps.
Wishing you well with your husband and do keep us posted.
Posted 6/3/2016 5:29 PM (GMT 0)
Thanks Countprof :)

The diet has always been tricky... in the beginning when really bad he was super strict and then once remicade started to work it was easier to not be so strict... Remicade kind of gave him a false sense of normalcy I suppose... its been so long that nothing was really bothering him... we have begun to eat clean again but this pain (as I am sure you know) is depressing him so much its hard to get anything out of him.... I am thinking an antidepressant might make the difference in him being able to cope. any thoughts on one that is a good one for UC patients?

Are you on SCD? sorta tried it in the beginning but he was so sick that nothing made a difference... how often do you have a colonoscopy and do you think one might be in order where the pain only left for 1 week?

thanks
UCWIFE1142
Posted 6/6/2016 10:38 AM (GMT 0)
It was easy for me. I saw food and anticipated pain. So I ate broth & rice & gradually added protein. Less food, less stool. I also had periods of entirely liquid diets for bowel rest. I did this twice for long periods of time while flaring. Once stabilized I ate more but still was cautious. Never got cocky. We are each different though.
I'm a believer in anti depressants. And anti anxiety drugs. Definitely worth trying, IMO.
I hope this helps!
Posted 6/6/2016 1:41 PM (GMT 0)
hey Wife -

just curious what the naturopath experience was like - helpful, frustrating, ridiculous, etc. ?

and my answer to the question "would he be in a flare if not on remicade " , would be probably -
Posted 6/6/2016 4:31 PM (GMT 0)
thanks Count :) the pain (I think) has been enough motivation to work harder!!! we have recently gave sugar the boot (really good documentary on sugar on Netflix just FYI). We also tried the really restricted diet when first really sick and in a flare, but found super hard as he is 6'5" and had to basically eat 24/7 in order to get enough calories... was down to 170lbs before things started to turn around.

Hi Stud,

We are still waiting to get in to see someone to get a Requisition (live in Canada so can be way too long) to see one!! that in its self is frustrating as it can take so long sometimes to just see his GP. I will post an update on that once we get somewhere!!

As for the recent pain, it seems to have subsided, so now we are in the wait an see pattern to see when/ if he has another bout of pain while we wait to see someone...I am under the belief that it was a reaction to the know "bad" things he ate prior to and I too agree that with out the remicade he would be in a flare.

Thanks
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