Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.



  • Please log in to reply
6 replies to this topic

#1 sis


    Bronze Member

  • Members
  • PipPip
  • 10 posts
  • Location:Virginia

Posted 24 July 2010 - 04:12 PM

I just returned from doctor and my skin is not getting any softer. I was using (Cellcept) for approximately 10 months. Now they are changing my medication to this IVIg (intravenous immune globulin). I would like to know if anyone has used this medication before and did it help with the skin, joints and muscle?

Tell me how you felt about this medication, how did it make you feel after taking it. How long did you take it before you saw a change in your condition? Anymore information will be greatly helpful and appreciated.

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 25 July 2010 - 01:34 AM

Hello Sis

We have information on site about IVIg that you might find helpful.

There are other people on the forums who have had IVIg and hopefully they'll join in with some personal experience.

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)

#3 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 25 July 2010 - 07:37 AM


I started IVIg (intravenous immune globulin) in the spring of 2004 (diagnosed in August 2003). I was started off at one 5 day treatment every 4 weeks, but have been at one 3 day treatment every 8 to 10 weeks for a couple of years now. (Whether it's 8, 9, or 10 weeks depends on my schedule and CPK levels (muscle enzymes). I was put on IVIg due to my polymyositis mainly, not the scleroderma, but I feel that it has helped both tremendously. It's the only thing that controls my muscle inflammation. (I've been on methotrexate, imuran, cyclophosphamide and now cellcept over the past 7 years). My current regimen is 2.5 g/days of cellcept and the IVIg. I had hard skin on my hands and fingers for about a year, but then it softened. I've never had joint pain so I'm not sure if the IVIg has helped with that or not. I do know that I don't suffer from pain as many do. The only side effects is a huge headache 24 hours after the 3 day infusion. It lasts exactly 24 hours, then goes away. It's weird because I can time it every time. Oh yes - another side effect - it makes me feel great! I am not fatigued and have more energy than before I started the treatments.

IVIg is actually not a "medicine" as we know medicines. IVIg is an infusion of IgG antibodies extracted from thousands of blood donors per treatmetn. That's why it's so expensive. According to WebMD "IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus)." Of course this information hasn't helped me in knowing exactly why it works for me, except that maybe my mixed connective tissue disease is caused by bacterial or viral infection. I'm not a doctor, so that is a wild guess. I do know that, even though I've been immunosuppressed for 7 years, I don't get colds, bugs or any of those little 24 hour things that get passed around.

The treatments themselves are painless (except for the stick or sticks) and can be boring. I always have a good book, my computer, and music. It can last 4 - 6 hours per session therefore, it really is some nice ME time. One thing to be very sure of - The infusion must start slow and be ramped up. Do NOT let them start you at full speed. I've read the protocol with my doctor and my infusion nurse. When they switched manufacturers last year, the nurse and I read the protocol together to make sure it was done right.

I know it sounds scary, but it's not. More inconvenient because of the time involved, but because it makes me feel so good - it's worth it! I hope it works for you like it has worked for me. Please let us know how you with it. Be sure to check the link that Amanda gave you. there's some good information.

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 gigi08


    Senior Bronze Member

  • Members
  • PipPipPip
  • 67 posts
  • Location:Pennsylvania

Posted 25 July 2010 - 03:25 PM

Hi Sis,

I was just put on cellcept about 1 1/2 months ago and I was just wondering if you were on it to help soften the skin or for another reason? I'm still doing my research on it and trying to figure out if its to help with the achy muscles and also the swelling. I was also wishing it would give me a little more energy and that I'd feel like doing things that I used to do. The doctor did mention the intravenous immune globulin to me also.

#5 susieq40


    Silver Member

  • Members
  • PipPipPipPip
  • 129 posts
  • Location:Montana, USA

Posted 27 July 2010 - 08:25 AM

Hey girls,

My doctor has never mentioned this IVIg. I've been on cellcept for 2 1/2 months and it seems to be lowering my white count and everything okay, but I'm in terrible muscle and joint pain. The doctor put me on Lyrica last week, it seems to help some, but I'm a complete zombie. I can't seem to wake up from the groggy feelings. Takes me forever, and then I just want to go back to bed. Any advice?

#6 sis


    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 10 posts
  • Location:Virginia

Posted 28 July 2010 - 03:15 AM

My understanding of Cellcept was to help soften the skin and help with muscle weakness and joint pains but my skin stayed the same, so they decided to change me.

#7 sis


    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 10 posts
  • Location:Virginia

Posted 28 July 2010 - 03:27 AM

Thanks Jan for this information, it is a big help and make me feel better about taking this infusion. I can deal with the inconvenient as long as it makes me feel good. I also hope it works for me like it has worked for you. I will let you know how I do with it. Again thanks.