Stelara increased muscle & joint pain

[crampygut]

Hi all,

just a quick question, I was on Stelara every two months then moved to monthly Stelara shots for the last two years. Since moving to monthly I’ve slowly developed joint and muscle pains that I’ve never had before. The pain is in my lower back, feet and a little in my hands. MRI’s show no arthritic signs or obvious inflammation.
Has anyone experienced these side effects after being on Stelara for awhile?

 

[Scipio]

I've been on Stelara every 8 weeks for over three years now, and so far I have not had these side effects.

 

[crampygut]

Hi Scipio

thanks for your reply. Unfortunately maybe it’s just unique to me. Thanks all the same

 

[my little penguin]

Ds has been on 90 mg every 4 weeks for almost three years as well . He started at every 8 weeks.
He also has juvenile arthritis (spondyloarthritis) which cause muscle pain and joint pain .
In his hands , knees ,heels ,and ankles
He has muscle pain in his lower back
The higher dose Stelara helps his arthritis but has to be combined with methotrexate per his rheumatologist .
They dx by feeling his joints /tendons (scar tissue ) and ultrasound not mri

he was dx with arthritis 7 years ago while in humira for crohns
So the Stelara wasn’t the cause .
Maybe get a second opinion with a different rheumatologist
Spondyloarthritis present differently than classic Rheumatoid Arthritis.

 

[my little penguin]

https://spondylitis.org/about-spondylitis/types-of-spondylitis/enteropathic-arthritis/

 

[crampygut]

Thank you for that feedback. I’ll speak to my Gastroenterologist and get him to send me to a rheumatologist for another opinion

 

[crampygut]

Ds has been on 90 mg every 4 weeks for almost three years as well . He started at every 8 weeks.
He also has juvenile arthritis (spondyloarthritis) which cause muscle pain and joint pain .
In his hands , knees ,heels ,and ankles
He has muscle pain in his lower back
The higher dose Stelara helps his arthritis but has to be combined with methotrexate per his rheumatologist .
They dx by feeling his joints /tendons (scar tissue ) and ultrasound not mri

he was dx with arthritis 7 years ago while in humira for crohns
So the Stelara wasn’t the cause .
Maybe get a second opinion with a different rheumatologist
Spondyloarthritis present differently than classic Rheumatoid Arthritis.

Hi, did the methotrexate help your sons joint, tendons and muscle symptoms?

 

[my little penguin]

Yes.
He was originally on humira when dx with juvenile arthritis associated with ibd.
The rheumatologist added methotrexate to humira .
When he switched to Stelara we were told to keep the methotrexate.
He also takes Celebrex (prescription nsaid that protects the gut ...) daily to help with his joints
So far no adverse Gi affects(scopes clean )
And uses gel heel cups in his shoes
He did pt as well for a while to learn what exercises are needed to keep things moving and reduce the muscle pain .
He does swim as much as possible (heated pool)

His arthritis is far worse than his crohns
Crohns is only mild
Arthritis and other EIMs (vasculitus etc..) warranted biologics

 

[crampygut]

Thank you again for your help. I spoke to my GI last night and he’s sending me to a rheumatologist soon. I’m hoping methotrexate also helps my issues. Thanks again

 

[jiff36]

Hi all,

just a quick question, I was on Stelara every two months then moved to monthly Stelara shots for the last two years. Since moving to monthly I’ve slowly developed joint and muscle pains that I’ve never had before. The pain is in my lower back, feet and a little in my hands. MRI’s show no arthritic signs or obvious inflammation.
Has anyone experienced these side effects after being on Stelara for awhile?

I have been on Stelara for 1 year, every 2 months. I have pain in my lower back in the morning for about an hour then it subside enough to function. Also in my heels of my feet but it doesn't go away throughout the day. It slowly goes away but comes back with every injection. It's been life altering more so than anything else. I went to a rheumatologist and got no help. Said I was fine, no arthritis to be concerned about based on all kinds of tests and imaging. Went to my PC doc and he MRIed me. Said there was no change in my back since 2015. I’m thinking it’s the Stelara. Now my GI doc wants me on it every month due to the capsule study he just did. I’m thinking, No. I need to be able to function.

 

[my little penguin]

Here is the thing
ERA (spondyloarthritis) is associated with ibd
Affects the back , Achilles tendons , knees hips etc…
It’s the black sheep of arthritis since it’s not RA .
When your crohns is flaring it can flare and move from location to location
In others folks the ERA flares independently of crohns flares .
Some rheumatologist are better than others treating ERA
My kiddo needs to take Stelara monthly plus methotrexate to treat both the ERa and crohns .

https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/enteropathic-arthritis/
Stelara is not the best at treating arthritis
Especially when it isn’t combined with methotrexate.