Side Effect of Infliximab?

[Joan]

Hi all,

I've been on Infliximab for over three years now and as far as my crohn's is concerned it was life changing until about a year and a half ago when I got a flare up three weeks after an infusion. I was given a double dose of infliximab, started on imuran and ended up with pneumonia and pleurisy which took four month and six anti-biotics to get rid of. Ever since I have pains in my muscles and joints which started mild but have been getting progressively worse. I have considerable pain in my arms and legs, muscles and joints, the more I use them the worse the pain. The infliximab infusion takes all the pain away for the first four weeks and I spend the second four weeks in agony while waiting for the infusion. I have had all the checks by rheumatology and they found nothing, no inflammation or arthritis etc. my bloods are all fine. I am wondering if any body has had a similar experience?

Diagnosed Crohn's disease 21 years ago
Bowel resection 18 years ago
Currently on pentasa 2g/day
Infliximab every 8 weeks

 

[araceli]

Hi Joan. Have they done a Lupus test? In some cases remicade can give drug induced Lupus.

 

[Patricia56]

I think drug-induced lupus actually gets worse with more infusions.

Sure sounds like an EIM to me since the Remicade gets rid of the symptoms.

What does your GI say? Are they willing to increase the frequency of your infusions given the degree of pain you are having.

And just because rheumatology doesn't find anything wrong that they can measure doesn't mean you aren't have EIM Crohn's arthritis which typically causes no damage but does cause pain.

 

[Joan]

Thank you for your very valuable advice, you're both on the right track, I have seen a rheumatologist who was sure it was lupus or arthritis but the bloods were negative for everything. He concluded that my pain was non-specific and called it fibromylgia and to take paracetemol, and exercise and physio would help. This didn't add up for me at all as I know people with fibro, the symptoms weren't the same and if it was, the infliximab wouldn't take the pain away.
I have since sought a second opinion from a professor of gastroentrology and he says it is definitely arthritis related to Crohn's, he gave me some steriods to tide me over until my next infliximab infusion in two weeks when I will see my usual gastroentrologist and discuss getting infliximab maybe at six week intervals or combined with imuran or something else that might work!

Thanks again for your helpful advice

Joan.