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sparkleplenty
Regular Member


Date Joined Nov 2010
Total Posts : 370
   Posted 2/5/2013 9:56 PM (GMT -6)   
Does anyone have trouble with muscle pain? I have an area around my shoulder blade that gets super tight and varies from an ache to a sharp pain. I've had problems with this shoulder off and on starting when I started Humira. I've had trouble with all the biologics causing joint pain and my shoulder has flared up every time.

I stopped taking cimzia in October because I could't tolerate the joint pain any longer. I don't have daily joint pain, but it does flare up for a week or two at a time. Last week my joints were going nuts and I realized my shoulder was really bothering me too. I can't find anything that talks about muscle pain like this. Last year I did physical therapy for 4 months and it did help, but I've been having intermittent trouble since then. I've discussed the shoulder pain a bit with both the GI and the rheumy, but it always sort of gets brushed away.

I had hoped the cimzia would be out of my system by now and I wouldn't experience these issues any longer, but maybe it just hasn't been long enough.
Diagnosed w/Crohn's in 2005. Meds: pentasa, synthroid, allergy meds, B-12 (liquid), multi-vitamin, probiotics, glutamine, bcq, migraine meds prn, and xanax, and vicodin prn. No surgeries.

Have tried: sulfasalazine, Asacol, entocort, imuran, humira, remicade (serious joint pain/fatigue stopped after 2 doses), 6MP, cimzia

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 2189
   Posted 2/5/2013 11:53 PM (GMT -6)   
Hi Sparkle:

I thought I should perhaps post this. I wrote it on the UC board a few days ago for a similar question about severe joint pain and remicade I think it was... I called it joint pain but in actuality it was more like very sharp pains, muscle stiffness and intense soreness. Actually very hard to describe.

----------------------------
Hi Jovi,

It's probably a different situation for me than yourself as it sounds like you had joint pain to begin with, but I wanted to type this out and comment on my experience just in case others search this in the future.

After about 2 years on remicade I awoke one morning (the fifth week) with and "odd" stiffness in my neck. Then the next morning, my foot, toes, etc. It was very intense and I had trouble just walking. I hung in there for a week till my infusion and sitting in the chair during the infusion the joint pain pretty much went away by the time it was done.

The next week - the exact same thing happened around the fifth week again - But 10X worse. I could barely walk, the pain traveled to different joints each day. It was intense. Sometimes I could only just lay there in bed as any movement would be just crazy painful. Same thing though... I tough it out to the infusion and the pain goes way.

Both my GI, doctor and the Remicade nurse said it sounds like I have developed rheumatoid arthritis, as they all said people with Crohn's or UC have a very high chance of this... They scheduled me for blood tests for rheumatoid arthritis. All came back negative but they still all insisted this is what it was and booked me to see a rheumatologist.

Honestly I didn't believe them. Something was up.

I googled "remicade and severe joint pain" one day and the first thread that popped up was a bunch of people experiencing this same or very similar thing, same frustrations, and same intense pain.

I printed it off, took it to my GI and said I wanted to try this blood test form Prometheus to see if I was building up antibodies to the remicade. He said he has never hear of this, nor the test for this and so on... Eventually I had to force him as he has to order the kit but he still held firm to "it's nothing more than arthritis". It's very common. Remi nurse said the same thing.

Anyway - while I waited for my GI to get the paper work and order the prometheus test, things just got worse...

I stopped my remicade on my own as the pain was that intense... - and I made an appointment with a new GI at the very same time...

about 2 weeks after not showing up for my last infusion -all pain went away and it's never come back to date since. about 14 weeks later I get a call from my original GI saying there's a time limit on the test and if you stop the infusions then they cannot tell for sure.... I told him the pain is already gone - and thanks for not helping/listening/reading... have a nice life etc... And that I won't be paying for the invoice for the blood test. He should have ordered it right away as I requested.

My new GI (who's awesome) immediately said in Canada docs won't do this test because it's not covered. I volunteered to pay for it myself which is why my old GI ordered it in the first place. And he said most don't even know it's available. The Remi nurse said she never heard of it (which I highly doubt) as well. He said usually protocol is to increase the frequency from say every 6 weeks to every 4 weeks to overcome the antibodies and see how things go and if it gets worse, then stop. Regardless, he agreed it was a good idea to stop since all joint pain was gone as well as a few other side effects.

The down side is that I never did take the actual blood test because the time frame had passed due to my old GI. So as my new GI pointed out we can never know for 100% sure... but it seems to him I had built up a resistance to it and that I should consider other options like Humira.

I'd keep an eye on things and if they get worse mention the tests etc to your GI and google remicade and joint pain.

It's pretty sad when we as patients have to do all this homework...


Hope you feel better soon.
Diagnosed Crohns-Colitis about 8 years ago (So i have no idea which board I should post to) Past Meds - Antibiotics, Prednisone, Methotrexate, Remicade

Current Meds - Prednisone 40 mg/Daily taping soon, Just started Immuran (Jan 21, 2012) 50 mg daily for two weeks then 150mg daily

Actually achieved full clinical remission for about 2 years using Remicade, Diet (SCD) and Exercise

sparkleplenty
Regular Member


Date Joined Nov 2010
Total Posts : 370
   Posted 2/6/2013 8:35 AM (GMT -6)   
Hey Canada Mark--

That is very similar to how I felt after a Remicade infusion. After my 2nd dose I could barely get out of bed. It was awful. I also wound up switching GIs at that point because mine would do nothing, and never even suggested I see a rheumy.

So frustrating!!
Diagnosed w/Crohn's in 2005. Meds: pentasa, synthroid, allergy meds, B-12 (liquid), multi-vitamin, probiotics, glutamine, bcq, migraine meds prn, and xanax, and vicodin prn. No surgeries.

Have tried: sulfasalazine, Asacol, entocort, imuran, humira, remicade (serious joint pain/fatigue stopped after 2 doses), 6MP, cimzia

Question Everything
Regular Member


Date Joined Aug 2012
Total Posts : 366
   Posted 2/6/2013 1:36 PM (GMT -6)   
Does anyone have trouble with muscle pain?

Yes, Arms and shoulder. I too no longer take Remicade, Am stopping Cimzia. Pain was worse, from time to time it hurts picking up as little as 5 pounds other times normal limits.

I guess better living through chemistry does not apply here.

T :)

Myself 09
Veteran Member


Date Joined Dec 2009
Total Posts : 4358
   Posted 2/6/2013 1:54 PM (GMT -6)   
Yes, gastro diagnosed the crohns, and then my rheumie diagnosed enteropathic arthritis, an arthritis with a link to IBDs. I also have fibromyalgia, which is why the arthritis wasn't picked up earlier. Pain from different sources is sometimes hard to figure out.
Fibromyalgia DX 2005. Ulcerative Colitis 2003, Crohn's 2013. Family History of Fibro--2 out of 3 siblings diagnosed.

There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot.

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1429
   Posted 2/6/2013 6:18 PM (GMT -6)   
I take Cimzia and have been having trouble with shoulder and neck pain. I thought it was maybe connected to my AVN diagnosis so my ortho ordered an MRI but I was clear. I also have had alot of joint pain but never thought to connect it to the Cimzia. Thanks for that heads up!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee was Oct 2011,
No colon surgeries yet but I am desperately trying to keep my colon.
8 blood transfusions, SVT due to low H&H, Anxiety during new medication injections due to past reactions.
Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, B12, fish oi

sparkleplenty
Regular Member


Date Joined Nov 2010
Total Posts : 370
   Posted 2/6/2013 7:10 PM (GMT -6)   
Wow...interesting that a few of us have similar problems. Has anyone found any relief, or had their docs do anything for it?
Diagnosed w/Crohn's in 2005. Meds: pentasa, synthroid, allergy meds, B-12 (liquid), multi-vitamin, probiotics, glutamine, bcq, migraine meds prn, and xanax, and vicodin prn. No surgeries.

Have tried: sulfasalazine, Asacol, entocort, imuran, humira, remicade (serious joint pain/fatigue stopped after 2 doses), 6MP, cimzia

AndrewAust
New Member


Date Joined Feb 2013
Total Posts : 18
   Posted 2/6/2013 8:48 PM (GMT -6)   
Are you taking cholesterol lowering meds
Andrew 50yo

I was diognosed with Crohn's in 1978 in which there were less that a 1000 people diognosed in Australia. I was 16yo. Bowel resection 2 years later and went into remission for 28 years. 2 years ago l suffered numerous serious tragedies which cased me to have a heart attack and a 6 way by-pass operation. 4 weeks later my Crohn's suddenly came out of remission.

sparkleplenty
Regular Member


Date Joined Nov 2010
Total Posts : 370
   Posted 2/6/2013 10:22 PM (GMT -6)   
Nope...my signature with all my meds is current. I'm just taking imitrex for my migraines, no blood pressure meds, and no cholesterol ones.
Diagnosed w/Crohn's in 2005. Meds: pentasa, synthroid, allergy meds, B-12 (liquid), multi-vitamin, probiotics, glutamine, bcq, migraine meds prn, and xanax, and vicodin prn. No surgeries.

Have tried: sulfasalazine, Asacol, entocort, imuran, humira, remicade (serious joint pain/fatigue stopped after 2 doses), 6MP, cimzia
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