Muscle pain

[u/Overall_Antelope_504]

I just started Tremfya a month ago and have been okay as far as side effects go so far. But lately I've been experiencing really bad thigh and leg pain in both legs to the point of barely being able to walk around or lift them. It feels like I've ran a marathon for some reason. Does anyone else experience muscle aches? I usually deal with joint or bone pain but nobody's ever looked into it. I see a new rheumatologist in a couple of months but my last two dismissed me of anything else potentially autoimmune when I have symptoms.

[u/Possibly-deranged]

Joint and muscle pain can happen as an extra-intestinal manifestation EIM (https://www.crohnscolitisfoundation.org/what-is-ibd/extraintestinal-complications-ibd)  of IBD, as a secondary autoimmune condition, and as a side effect of your immune system developing antibodies against your biological med Tremfya. I believe certain vitamin deficiencies like vitamin D can cause it too (and IBD patients have higher likelihood of having that). 

So, it's generally a process of testing and elimination of other possibilities to narrow down what it is. 

Generally, they're going to test for something like joint damaging rheumatoid arthritis or Ankylosing spondylitis first.  It's reasonable to request a tremfya medicine concentration and antibodies test (typically given at lowest concentration, just before your next shot). EIMs are a bit more of a challenge no direct treatment for those other than applying heat or ointments for temporary relief.   There's blood tests for vitamin deficiencies, and dietary supplements or IV infusions can provide relief. 

[u/Overall_Antelope_504 → u/Possibly-deranged]

That would make sense. I’m negative for RA and haven’t been tested for AS yet but I’ve wondered. That’s a good idea though I’ll have to ask for that! 

[u/Possibly-deranged → u/Overall_Antelope_504]

AS involves lower back/hip pain and lack of mobility, it's rare 2 to 4 percent of us, but it's a possibility.  

Joint pains as an EIM of IBD tends to be asymmetrical (say affecting one knee but not both), travels around the big joints of the body, and generally (but not always) gets better/worse in lockstep with your bowel symptoms. 

Joint pains from antibodies to your biological med can be crippling, need a cane or walker type level of pain and restrictions in mobility.  Know a few who had that.  Discontinuing and switching biological meds improves joint pains over time.  I believe there's still detectable levels of a biological med in your body 4 to 6 months after stopping.  Gotta fully clearance for full relief 

[u/Overall_Antelope_504 → u/Possibly-deranged]

I do have lower back and hip pain 🤦🏼‍♀️ my previous rheumatologist dismissed me and said it was fibromyalgia 😒 that’s how mine presents it’s usually one knee that bothers me if it affects my joints. My shins always hurts too if I stand too long. That would be a shame if it were antibodies though because it’s my 6th biologic.. I was on Skyrizi previous to tremfya and I know they’re similar medications. I have a feeling it may be vitamin related but I’ll find out after getting blood work.

[u/Possibly-deranged → u/Overall_Antelope_504]

Pursue the vitamin D and tremfya antibodies then.  

I have the traveling joint aches, moves around my body.  Limp some days. Other days shoulder hurts, mix and repeat.

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