1. < Autoimmune Diseases

Switch to IVIG as medication for Clippers

Posted by donnyboy @donnyboy, 2 days ago

My rheumatologist and neurologist are preparing to for me to try IVIG (such as Gamunix C) as a medication that could replace prednisone. I have been on 20 mg prednisone for 6 months steady and it has stabilized me but they think it would be better to move away from it if possible, I would start with both medications and gradually taper off the prednisone. Does anyone have experience doing this that you could share?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

luma22 | @luma22 | 20 hours ago

Sí, padezco Clippers.
Toda la literatura visionada hace referencia a disminuir la cortisona para evitar sus efectos secundarios, indicando que existe recidiva en los casos de menos de 20 mg/día.
Tratando de sustituir el corticoide por otro immunosupresor (Cell Cept, Micofenolato, Tacrólimus, anticuerpo monoclonal...)
Ayudando igualmente con Vitamina D, Inmunoglobulinas...

REPLY
1 reply
Karen B. | @bram7747 | 14 hours ago
In reply to @twinkie23 "I have been having IVIG infusions for six months for SLE and small fiber neuropathy. It..." + (show)
@twinkie23

I have been having IVIG infusions for six months for SLE and small fiber neuropathy. It may not be the same as most people but I have had an incredible response to this therapy. My chronic pain has been helped and I feel like a different person. I was not on prednisone but have been taking many medications to control, or try to control, my chronic pain which I am able to stop. If there’s anything I can help you with, please let me know.

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Can u have IGIV infusions if u take a rejection drug for heart transplant. My husband’s is tacrolimus, which lowers the immune system to recent rejection. He has developed many issues since the transplant, the worst of which is unrelenting pain & some numbness.

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kitchener64 | @kitchener64 | 11 hours ago
In reply to @becsbuddy "@kitchener64 Welcome to Mayo Clinic Connect! You’ve given some lab values, which, I’m sorry to say,..." + (show)
@becsbuddy

@kitchener64 Welcome to Mayo Clinic Connect! You’ve given some lab values, which, I’m sorry to say, none of us can comment on as we’re not medical professionals. You did mention some symptoms, brain fog, anxiety, and just not feeling well. Have you seen your doctor and what do they say? Let us know more and I’m sure someone will come to your assistance!

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Lots of.. lol. Internal Med doctor , Neurologist, Rheumatologist.. my DSDNA twice been Indeterminate ( what and see prognosis) Neurologist thinks it could be Systamatic Infammation Response . I have several worn out parts that need repair , but I keep working with the help of pain meds etc..MRI ordered which can show what some of the other test on their own can’t confirm .. all very, very interesting!

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suetex | @suetex | 9 hours ago
In reply to @becsbuddy "@donnyboy I was on prednisone for 6 years and finally stopped the end of November. I’m..." + (show)
@becsbuddy

@donnyboy I was on prednisone for 6 years and finally stopped the end of November. I’m also on mycophenelate which does the same as prednisone without the side effects. I’m also on IV rituxan twice a year which gives me great results!

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I had to look at the drug you mentioned as a replacement for prednisone as I should not use pred as I have glaucoma. Wow! What a long list of possible side effects and some of them pretty yucky. I would say you are very fortunate to tolerate it. I have also used Rituxan and I can't say whether it helped, but at least it didn't seem to hurt. I am using it with IvIg and the pair has finally kicked in and started to help. Only took over a year. Good thing I am patient.

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1 reply
jimvosacek | @jimvosacek | 8 hours ago
In reply to @twinkie23 "I have been having IVIG infusions for six months for SLE and small fiber neuropathy. It..." + (show)
@twinkie23

I have been having IVIG infusions for six months for SLE and small fiber neuropathy. It may not be the same as most people but I have had an incredible response to this therapy. My chronic pain has been helped and I feel like a different person. I was not on prednisone but have been taking many medications to control, or try to control, my chronic pain which I am able to stop. If there’s anything I can help you with, please let me know.

Jump to this post

Thanks for your experience. I have clippers and I am off prednisone for two months after being on it for two years. I am very tired since I have been off. Glad to be off but I am hoping to get to some
what normal again.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | 8 hours ago
In reply to @luma22 "Sí, padezco Clippers. Toda la literatura visionada hace referencia a disminuir la cortisona para evitar sus..." + (show)
@luma22

Sí, padezco Clippers.
Toda la literatura visionada hace referencia a disminuir la cortisona para evitar sus efectos secundarios, indicando que existe recidiva en los casos de menos de 20 mg/día.
Tratando de sustituir el corticoide por otro immunosupresor (Cell Cept, Micofenolato, Tacrólimus, anticuerpo monoclonal...)
Ayudando igualmente con Vitamina D, Inmunoglobulinas...

Jump to this post

@luma22 there is a discussion group for Clippers only. Here is the link:
https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/
I think you don’t want to confuse yourself with all the other diseases. Are you at the point where you want to change prednisone to something else? What would you like to see happen?

REPLY
1 reply
jimvosacek | @jimvosacek | 7 hours ago
In reply to @becsbuddy "@luma22 there is a discussion group for Clippers only. Here is the link: https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/ I think..." + (show)
@becsbuddy

@luma22 there is a discussion group for Clippers only. Here is the link:
https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/
I think you don’t want to confuse yourself with all the other diseases. Are you at the point where you want to change prednisone to something else? What would you like to see happen?

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Trying to see how it goes being off prednisone but I am open to try other treatments. Not much in the way of trials yet.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | 57 minutes ago
In reply to @suetex "I had to look at the drug you mentioned as a replacement for prednisone as I..." + (show)
@suetex

I had to look at the drug you mentioned as a replacement for prednisone as I should not use pred as I have glaucoma. Wow! What a long list of possible side effects and some of them pretty yucky. I would say you are very fortunate to tolerate it. I have also used Rituxan and I can't say whether it helped, but at least it didn't seem to hurt. I am using it with IvIg and the pair has finally kicked in and started to help. Only took over a year. Good thing I am patient.

Jump to this post

@suetex. Yes, mycophenolate does have a long list of side effects, but I was in such a state and dumber than i am now. I got the serious diarrhea and once I told my doctor about it, she immediately changed to mycophenolic acid (Myfortic). I've been fine ever since!

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