Infliximab or Crohns causing joint pain and hair loss?

[Blinjo]

Hello, I am 51 and recently diagnosed with moderate crohns in August. I was initally on predesilone tapered and subsequently Infliximab/Remicade. I am due my 4th infusion on 14th but not sure whteher to delay this as I am experiencing joint pain/weakness and hair loss. I am not sure if it is the actual crohns disease or infliximab causing this. I am in a much better place since being on it and joint pain/weakness is manageable.

I am hoping the next infusion will continue to help and reduce the flare but don't want to have it if it will make my joint pain and hair loss worse and would rather try an alternative. IBD nurses are quick to brush it off and say its the crohns although research says it could be the infliximab.

Has anyone else experienced this?

[SuzyQ67]

Since you are in the moderate range keep in mind your your body has not been in a healthy state, such as not getting the nutrition it needs. I belong to another health forum & hair loss is common when flaring. If the medication is helping your symptoms is it really worth the risk of getting worse. I was on Remicade with great results.

[Blinjo in reply to SuzyQ67]

Thanks for your feedback. I was in a very bad place when first diagnosed so think you're right. I will continue with treatment and see how I go over the next few months. Hopefully Mondays infusion will reduce the flare even more and my hair will grow back!

[Hells18]

Hello I’ve had ibd since 2003 and was on pred a lot and it’s giving osteoporosis that causes joint pain aces and pains after long term use it’s a side effect xxx

[Blinjo in reply to Hells18]

Hi,I finished pred 2 months ago and have never otherwise been on it. The joint pain is symetrical in my body as opposed to being in one knee or a foot etc so not sure its the pred. Many thanks

[paulf6]

I have moderate ulcerative colitis and have been on Infliximab/Remicade since April 2019. It has made a world of difference for me - not perfect but I can now be out of the house for hours at a time and not be constantly thinking about where is the nearest bathroom. I have experienced leg weakness, but I also have peripheral neuropathy in both legs and feet. I do leg exercises every morning and then ride my exercise bike for 20 minutes. On any day when the weather is good, I get out and take a 15 minute walk. I wish you the best.

[Blinjo in reply to paulf6]

Thank you

[Beachforme]

Hi, I had joint pain when I was first put on Humira. It was really bad and I also considered stopping. I did not. The longer I have been on it, the joint pain has lessened. I am glad I stuck with it. I have been in remission 5 years after 1 resection.

[Blinjo]

Thanks. 5 years sounds good, long may it contnue. Joint pain getting worse same with hair loss. Next infusion due in early Feb so I will see how I feel before then as it can be debilitating.