amberjolie

Remicade and visit to rheumatologist

5 posts in this topic

Saw my rheumatologist today. She's willing to try Remicade (Infliximab ) for me (my pushing), and said that although it isn't used to treat scleroderma, it does treat joint and muscle pain, which are my most difficult symptoms right now. I have to go through the customary TB test and chest x-ray, and need my vaccinations updated first, though.

 

She feels I have an overlap with scleroderma, rheumatoid arthritis and myositis, because I have so many symptoms of all three. Boy, I'm just an autoimmune smorgasbord, aren't I? I'm sure a lot of you are probably similar.

 

She mentioned that my pulmonary tests came back fine except for one reading which she said can be indicative of pulmonary hypertension. But I had an EKG just before that which came back fine, so she said it's just something we need to monitor. Hopefully it doesn't progress into anything (or that it's a false reading or something).

 

But I get to stop the Leflunomide, which means I only need bloodwork once a month again instead of every other week! :emoticons-yes: She wants me to stay on the methotrexate, though, because she said it helps the Remicade work better and reduces the chances my body would have an immune reaction to the remicade.

 

I'm just going to wait until I get my brain MRI (for migraine auras) before I start it, because Remicade can cause neurological type symptoms in some people, so I want to make sure there's nothing strange going on in my brain first. At least nothing physically strange, that is... :P

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Hi Amberjolie,

 

It sounds as if you've had a productive appointment with your rheumatologist and I hope that the Remicade (infliximab) will help with your joint and muscle pain. I've also included a link to our medical page on Biologic agents, which includes Remicade, for the benefit of our other members, as this medication can be used to help with the pain and inflammation caused by Scleroderma.

 

I do hope that you don't develop Pulmonary Hypertension; however, it's a good thing that your rheumatologist is aware of it and can monitor it to ensure that if you do show any symptoms, they can be dealt with promptly.

 

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 Amberjoile

 

I hope the Infliximab works for you and the side effects, if any, are minimal.

 

Regarding the pulmonary hypertension, it can only be truly diagnosed by right heart catheterisation so until such time don't worry about it.

 

So you have more than one autoimmune disease then, eh? Well, what's just greedy and attention seeking if you ask me! :lol: :lol:

 

Take care and try not to get anymore!


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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Well, I always was pretty competitive, and my husband has two autoimmune disorders, so I just HAD to have at least 3! :P

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Hi Amberjolie,

 

Well you certainly had an interesting and productive visit, didn't you? That was a lot of ground to cover. I'll be sending good wishes your way for your brain MRI.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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