NO more Remicade for me...

[EdM68]

Well, my next infusion was supposed to be tomorrow, but I've made the big decision to forego further remicade trmt. This is based on the fact that after several bouts of terrible joint/muscle aches and pain - usually arriving within a week to 2 weeks before each of my last 4 infusions - I went to a rheumatologist who says I have a positive ANA. He'll be doing a Histone test (supposedly to help differentiate between possible Lupus or drug-induced Lupus symptoms), but the whole thing just scares me too much to keep getting the Remicade.

This happened a bit in 2008, and then came back a lot worse over the last 7 months, and each time, my Gastro didn't do anything about it, except say it probably isn't the Remicade, and that if anything, we should increase my dose and/or shorten the interval between infusions. We shortened it to 6 weeks, but now the pain just comes sooner.

The rheumy isn't even willing to say it's the Remicade, and he said Remicade isn't a med that causes DILE. Next time I see him, I'll be referring him to Centacor's Remicade web page, which clearly says it can happen. How does a doctor whose expertise is supposed to be autoimmune disorders not know the major side effects of these meds?!

Can anyone else who's had these problems and went off the Remicade tell me how long it took for the joint/muscle pain to go away? I'm hoping it's not too long, because it makes it really difficult to go to work, do housework, or even get a good night's sleep.

 

[SarahAnne]

So sorry to hear about the joint/muscle pain, I don't really have any advice as I haven't had the problems. I do get a little achy sometimes in the evening the day of my infusion, but it's never lasted very long. How long were you on it before you started having problems?

Remicade is a rheumatoid arthritis drug (that has been shown to help Crohn's), it's scary that a rheumatologist wouldn't know of the side effects, even the less common ones.

Good luck with your further treatment, let us know what happens!

 

[Angrybird]

Hi, I was on Remi(Infliximab) and it was stopped because I had the same issues you are having, with constant join pain that was so bad it even hurt to lie in bed - the pressure of the duvet on my knees was awful. I also had red blotches come up around my eyes and on my elbows and fingers. My blood results made it look like I had Lupus, I was bad enough that my GI had me admitted as an inpatient from my clinic appt. I had some IV steroids and I was up and walking normally the next day. They did a lot of tests etc and follow up appts and they eventually confirmed this was down to the Remi and I don't actually have Lupus (phew). I do still get pain sometimes in my knees, hands and back but this can easily be put down to the crohns as this can cause joint pain and my pains tend to be worse when this it is acting up.

 

[EdM68]

Sarah Anne - I was on it almost a year when I first experienced some moderate joint pain in my wrists and hands back in 2008. It lasted about 5 months on and off. My gastro pretty much ignored it then and the rheumy said it was most likely arthralgia. It eventually went away and I didn't have any problems until May 2011, one day before a scheduled infusion.

Overall, I was on Remicade for 4 years. I'll miss it because it really helped with my Crohn's symptoms.

As for the rheumy - I have some additional labwork to do with him, but when I go back for the followup, I plan to take a lot of things I've researched that says Lupus like symptoms and DILE are most definitely possible side effects. Then I'll be looking for a new rheumy.

Angrybird - amazing that you said that! I have been getting blotches around my eyes recently. I thought it was because I have a tendency to forget to wash my hands after petting my cats and then rubbing my eyes. And last night I started developing reddened blister-like spots on my fingertips. No reddening of the elbows, but I have developed nodules on both of them.

Prednisone (6 day Medrol pack) helped back in December, so I tried that again a couple weeks ago. It only worked on the first day, when the dose is highest. I think I'll ask for a regular prescription to use when things get really bad.

 

[Angrybird]

Definetly worth pursuing, as already mentioned it took IV infusions of the steroids to actaully get the pain under control so it may be worth asking about this. The I was put on maintainence dose of tablets that I gradually weaned down from. Let us know how you get on.

 

[EdM68]

Thanks, Angry. After some arguing with my rheumy, I got more prednisone. The way he acted when I asked him for it you'd think I was asking him for narcotics. We're awaiting the results of an anti-histone test he ordered, then I'll be looking for a new rheumy.

 

[Angrybird]

Good for you!!!! How long do the results take roughly? I am wondering how quickly you can reasonably start bugging the doc about it