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IVIG anyone?

intravenous gamma globulin IVIg

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#1 fragiledancer2

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Posted 23 January 2013 - 03:01 PM

I am starting intravenous Gamma Globulin (IVIg) 5 consecutive days once monthly due to a relapse.

Has anyone had this experience? How many months is the protocol, and have you seen results?

#2 Shelley Ensz

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Posted 23 January 2013 - 04:49 PM

Hi Fragiledancer,

I'm sorry you're having a relapse and I hope that your IVIg treatment is helpful. We do have some members who have been on IVIg.

My husband had a few IVIg treatments, but he doesn't have scleroderma. He just had an awful lot of serious infections after his lung transplant, and just a few IVIg treatments helped him turn the corner. It is sort of a treatment of last resort for many folks, because they cost so much (usually about $10,000 per treatment) so, depending on the plan, it can be difficult to get insurance approval even in cases where it is probably needed.

Anyway, my husband had no side effects from IVIg and it really bolstered his immune system and helped him overcome the infections. Some people experience headaches from the treatments, especially when the infusions are done too rapidly. Some people remain on the treatment long term whereas others seem to benefit from just a few rounds of it, so there may be no telling whether you are looking at a short term or long term treatment plan. It was my understanding that usually they order an initial series (in my husband's case, it was 6) for insurance approval, and then they re-evaluate the need for it along the way.

The treatments usually last for half a day, and are in boring little infusion departments, so bring a good book or a chatty friend for companionship. Also they usually only have the dullest snacks on hand, like small fruit juices, so you may want to pack a lunch or bring along some healthy snacks, your ipod, or even board games. Odds are that boredom is going to be your biggest challenge.

That, and figuring out what to do with your increased energy once you start feeling better! I hope it all goes swimmingly for you.

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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.

#3 Margaret

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Posted 24 January 2013 - 02:02 PM

Hi Fragiledancer ,

My son, Gareth, 24 years old, has been receiving IV Ig infusions for a year now because he is deficient in IGg 2/4 --- the ones that fight bacterial infections. He also has MBL deficiency --- a component that fights bacterial infections, too. He goes every 4 weeks and they usually take 3 hrs. He does suffer from the headaches, and since last Aug, needs asthma meds for a week or two after because they can cause constriction of the lung bronchi. The good news is that he's only had one sinus/ear/pneumonia case in the past year and wasn't hospitalized for the pneumonia. They do work for him but take a physical toll on his body. He was diagnosed with UCTD, at age 18, due to esophageal dismotility, + ANA, + anti-RNA Polymerase 1/111, 20 # weight loss, extreme fatigue, and chostrochondritis.

Take care, Everyone.
Margaret

#4 Shelley Ensz

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Posted 28 January 2013 - 07:28 PM

Hi Fragiledancer,

Have you started your IVIg treatments yet? If so, how are they going?

: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.

#5 fragiledancer2

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Posted 29 January 2013 - 03:06 PM

Yes, I went five days last week and although there were some minor issues it went well with little bad effects. I will be deciding whether to have a port for easier access. I can't imagine doing this for a year though as we are thirty traffic congested miles away from the hospital. I could consider home care but not sure I'd feel confident about the nurses. We'll see and I will keep you posted.

#6 Shelley Ensz

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Posted 29 January 2013 - 06:03 PM

Hi Fragiledancer,

I'm glad that you had manageable side effects from it.

We're going through the port issue with my husband right now (but for a different medication). He is going to have minor surgery to get a permanent port inserted next week. Then we are going to have training in the infusion center or by a home nurse, and once we feel confident about it, we are going to do it ourselves.

The pharmaceutical company even called us last week, because they heard we have issues with having to go to the infusion center every week, and said that they will pick up the tab to provide a home nurse for us every week, which really surprised us! But we'd still prefer to do it ourselves; it is just so much more convenient, for the long haul, especially since he will need to be on this treatment for the rest of his life.

Anyway, contact the pharmaceutical company if they give you any grief over having to have it done by a home nurse, because they might be able to make the process easier for you to be able to continue the treatments.

: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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