Crohn's and AWFUL muscle pain

[PeggyS]

I am new here. I am 63, was diagnosed with Crohn's 13 years ago, put on Asacol and had a quick remission for many years. Then, 2012 was not so good. I was started on CIMZIA and my muscle pain is getting much worse! Anyone else have muscles that feel like they are about to tear apart? Having cramps at night but worse problems during the day trying to walk! I have a lumpy thing sticking out of my back at the level of top of lumbar spine, which extends to the left. I have little fibrous things on my thighs that are very painful. They have been tested and x rayed and NO diagnosis.

I would really like to get off CIMZIA and see if the pain can ease up. This is awful! Anyone else have these awful muscle problems? (I have had some hip muscle pain since age 16. NO accurate diagnosis so far.)

Thank you!

 

[Angrybird]

Hello and welcome to the forum.

I am sorry to hear that you are not doing so well at the moment, I myself have not had issues with muscle pain, just joint pain in the past that has been put down to the crohn's as it only heppens if I am flaring. It could well be down to the Cimzia, I have not been on this myself but we have a sub forum for this that is worth checking out to see if others on this med have had this issue: http://www.crohnsforum.com/forumdisplay.php?f=87. How is the tum itself at the moment? Is you GI doc aware of the problems you are having? Also with the tests that have been done to look into this have your vitamin levels ever been tested?

AB
xx

 

[PeggyS]

Thank you for responding. Yes, I have been tested up and down. On extra Vit D and Vit C. I have a wonderful rheumatologist and neurologist as well as my GI doc. NO one can come up with the reason for my muscle problems.

I will check out the sub forum for Cimzia. This is very new for me and it seems to be making things worse.

Again, thank you for your reply!

PeggyS

 

[Angrybird]

No worries hun, please keep us updated on how you get on.

 

[David]

Hi Peggy,

Do you have ANY other symptoms? Rash? Numbness? Tingling? Restless legs? Racing heart? Anything else that might be a clue?

 

[PeggyS]

Thanks for your note. It is very difficult to know what's being caused by the Cimzia vs. other conditions. I have very bad muscle pain. No joint problems. I had another MRI of lumbar spine this week to see if perhaps that might be the cause of the muscle pain and I am having more EMG/nerve conduction tests soon although I have had more than 7 hours of them (Not all at one time!)

My case is very complicated so it's very difficult for my team of doctors but I wondered if anyone else had bad muscle pain caused by cimzia. I have rashes but they were there before the cimzia as were other worrisome symptoms.

I have to inject more cimzia tomorrow and I am not a happy camper!

 

[David]

Where are the rashes located and what other worrisome symptoms?

 

[PeggyS]

The crohn's doc thinks everything is related to the crohn's. I have an entire team of doctors, though, each looking at different parts of me. The skin doc says I have rosacea and eczema. The rashes come and go all over.

I have a long involved history but, right now this muscle pain- from hips to thighs, to calves, is awful.

THanks for your replies!

 

[David]

There is a strong correlation between people with rosacea and small intestine bacterial overgrowth. Be sure to read up on that and discuss the idea with your doctors. And the problem with SIBO is it interferes with utilization of vitamins and minerals. I'd bet money that you're deficient in vitamin B12 and magnesium and those deficiencies are causing many of your symptoms.

 

[PeggyS]

SO sorry it has taken me so long to reply and send my thanks. I will look into this. I am going to be presented at a "grand rounds" this evening by a team of rheumatologists and dermatologists to see if they can come up with anything. My colon is not doing so well. Latest colonoscopy showed a lot of disease on the right side, left side looked ok. Thank you for your kind response.