infliximab

[Fortune7]

Hi I’ve recently started on infliximab infushion for my rheumatoid arthritis I also have osteoarthritis and fibromyalgia. Since my first infusion three weeks ago I’ve had an upset stomach for a week which meant a gap of three weeks between infusions instead of two. A week ago from my left knee down to my toes had been cold and numb. I’ve seen my doctor last Monday and he drew of 30 ml of fluid of my knee which was very swollen. I also have a lot of hip and back pain Also gave steroid into the joint . Has anyone else had any issues with inflixab

[Blearyeyed]

I've not had it myself but I did get another biologic last year for my Migraines that didn't agree with me.Are you on any osteoarthritis or arthritis forums on here?

You will probably get a lot more responses with their experiences about infliximab on those that could be useful for you.

Just remember to add you have fibromyalgia, and you'd particularly like answers from anyone that might have fibromyalgia as well as OA or RA , just to see if the experiences are different.

As far as I'm aware it can be a mix of experiences some people find biologics a miracle some get lots of side effects and decide to stop. I think you need to give them a bit of time but ultimately listen to your body and make the choice whether to carry on or not.

Hope things improve for you , take care , Bee

[Flipper12345yellow]

Hi I had my first infliximab I v in September and I was so concerned about numbness from calf to toes and pins and needles down the back of my leg that I rang the nurse and we decided that it was not a good idea to continue with it.

I already have neuropathy in my feet and had I known that infliximab can cause nerve damage I would not have started on it.

Now I'm waiting to hear from the hospital as to what to do next.

Hope this helps.

[Fortune7 in reply to Flipper12345yellow]

Thanks I think that could explain the leg numbness. I’ve been having the worst R/A flare I’ve ever had since starting on it. Been unable to walk.

My Doctors trying to get me an appointment with rheumatologist but not having any joy due to staff shortages in Weymouth Dorchester area . There’s no longer R/A team based here . We only have a phone help line. Which is an answer phone to leave message . And u sometimes wait a week or more before your calls returned

[Flipper12345yellow in reply to Fortune7]

It's very difficult when we just have to leave messages. Infliximab doesn't suit me but I haven't a clue what they'll try next, I've tried so many . Doesn't help that I'm seropositive.

Hope you're being looked after.

[Fortune7 in reply to Flipper12345yellow]

Yes I’m zero positive to still carrying on with inflicimab infushion not making any difference at the moment just been diagnosed with osteoarthritis in hip and r/a in knee by my Doctor but any further appointments with orthopaedic s has to be done though rheumatologist. An I have no appointments with them till 19th December the same date as a planned infusion so that appointment will be cancelled. I’ve had no appointments with them since early in the year. I feel like as I’ve tried all available treatments now they do really want to see me