amberjolie

Remicade update

4 posts in this topic

Went for my third infusion of Remicade a few days ago. About 2/3 to 3/4 of the way through, I started getting back spasms. I got up to see if moving around would help, but they got worse. So the nurse stopped the infusion, and the rheumatologist on call came over and mentioned that he's seen it happen in a handful of people (so very rare), and that he believes it's an autoimmune response. Figures. I've got autoimmune responses to everything else anyway, why not the meds, too?

 

He wants to do bloodwork in the new year to confirm, but he said typically if someone who got back spasms tries another infusion, they tend to come again stronger and quicker. So I'm guessing that's it for the Remicade for me.

 

Everyone keeps saying there are other biologics I could try, but I don't know if my rheumatologist would be interested in putting me on them, because she said they don't help the scleroderma, just the joint pain and muscle weakness (which the Remicade wasn't really doing anyway yet). But I see her at the end of January, so I guess I'll see what she says then.

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Hi Amberjolie,

 

I'm sorry to hear that your infusion of Remicade hasn't been successful.

 

I've included a link to our medical page on Biologics to give you some more information, but it does sound as if your rheumatologist would perhaps not be prescribing another one for you.

 

I would definately broach the subject with her on your next appointment at the end of January.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Amberjoilie

 

I had back spasms that made me vomit when I had the Iloprost infusion but I was given painkillers and anti sickness medication. I don't understand why they didn't do this for you? Mind you, I guess it doesn't matter as you've stopped the infusions.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amberjolie,

 

Aww I'm sorry. I know that must be very discouraging. It's hard to get your hopes up about something, to then find out it's not going to work for you. Asking about other treatments is a good idea. Hang in there!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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