I hope it works for you. If I have the opportunity to try IVIG, I’d also ask to start slowly to make it easier to identify and manage any side effects. I have central sensitization and that approach usually works best.
I’ve had 8 mos of IVIG infusions, with no difference in my symptoms,u fortunately,so we discontinued them.
That was the second ti e in a few years I had tried them,with no success.
Hope they work for you!
This is a slow process, and your Johns Hopkins neurologist asking for a second opinion is an encouraging sign of medical humility. My main neurologist also sought another pair of neurology eyes at Massachusetts General, and it was their concurrence that opened the way for IVIG. Nothing in this disease is a guarantee, as you know from your knowledge of the research studies. However, if insurance covers it and both neurologists agree to try it, I hope you do. Best of luck!
I will get in contact with Mass General and find out if I can get a recommendation for treatment plans. I live in New England and I am on Medicare but I most likely will have to pay out of pocket if I can arrange an appointment. Thanks for post statement about Mass General.
I will get in contact with Mass General and find out if I can get a recommendation for treatment plans. I live in New England and I am on Medicare but I most likely will have to pay out of pocket if I can arrange an appointment. Thanks for post statement about Mass General.
I will get in contact with Mass General and find out if I can get a recommendation for treatment plans. I live in New England and I am on Medicare but I most likely will have to pay out of pocket if I can arrange an appointment. Thanks for post statement about Mass General.
I get IVIG infusions every three weeks for CIDP. At first I took Tylenol and Benadryl before the infusions. Now they give me Tylenol and Zyrtec. Has anyone had a positive experience with Tylenol and Zyrtec before the infusions?
Privagen every 4 weeks. Infusion takes 7 hours. Im not sure of the effectiveness On 6 months and off 6 months. I didn't get better and I didn't get worse for 2 years. So I still had FOOT FLOP In January and February the side effects became more uncomfortable and my balance was getting worse, so, we suspended it. Balance was and still is, my issue No pain or tingling ever. Im retesting now and hope for new or better treatment. I don't believe there is a cure for this blood disorder. Comments please John. Jrichardfla@gmail.com
I will get in contact with Mass General and find out if I can get a recommendation for treatment plans. I live in New England and I am on Medicare but I most likely will have to pay out of pocket if I can arrange an appointment. Thanks for post statement about Mass General.
I was on IVIG therapy from age 10-18. I went off of it when I went off my parts insurance. It worked wonders. I will tell you something else that is working. The United States isn’t there yet. I am using alpha lipoic acid. In Germany where my husband is stationed they use IV alpha lipoid acid. I have a lot of drug allergies so they started me off slow. I ordered the pills through Krogers Pharmacy I could not find it on the shelf. https://www.webmd.com/vitamins/ai/ingredientmono-767/alpha-lipoic-acid
I get IVIG infusions every three weeks for CIDP. At first I took Tylenol and Benadryl before the infusions. Now they give me Tylenol and Zyrtec. Has anyone had a positive experience with Tylenol and Zyrtec before the infusions?
I have started using alpha lipoic Acid. In Germany where we are stationed they have had a lot of success with it by IV. I take it by mouth. I am not diabetic. I started on the pills to make sure I am not allergic to them. I am currently on 400 mgs. I have a ways to go.
I have seen the difference. I can tell when I take them and when I forget. I take it at 2:30 pm and am no longer waking up at 2:30 am. I couldn’t find them so I asked Krogers pharmacist to order them. https://www.webmd.com/vitamins/ai/ingredientmono-767/alpha-lipoic-acid
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I’ve had 8 mos of IVIG infusions, with no difference in my symptoms,u fortunately,so we discontinued them.
That was the second ti e in a few years I had tried them,with no success.
Hope they work for you!
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4 ReactionsScott22 @scott22
I will get in contact with Mass General and find out if I can get a recommendation for treatment plans. I live in New England and I am on Medicare but I most likely will have to pay out of pocket if I can arrange an appointment. Thanks for post statement about Mass General.
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3 ReactionsScott-- I had the infusions for something else, but DO check your insurance before getting them as infusions are VERY expensive.
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3 ReactionsI have had IVIG infusions for 10 yrs and it does nothing for my neuropathy. They cost about $16,000 a month. Don't waste your money.
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4 ReactionsI get IVIG infusions every three weeks for CIDP. At first I took Tylenol and Benadryl before the infusions. Now they give me Tylenol and Zyrtec. Has anyone had a positive experience with Tylenol and Zyrtec before the infusions?
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2 ReactionsI’ve had them also, and they did nothing for me either.
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1 ReactionPrivagen every 4 weeks. Infusion takes 7 hours. Im not sure of the effectiveness On 6 months and off 6 months. I didn't get better and I didn't get worse for 2 years. So I still had FOOT FLOP In January and February the side effects became more uncomfortable and my balance was getting worse, so, we suspended it. Balance was and still is, my issue No pain or tingling ever. Im retesting now and hope for new or better treatment. I don't believe there is a cure for this blood disorder. Comments please John. Jrichardfla@gmail.com
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1 ReactionI was on IVIG therapy from age 10-18. I went off of it when I went off my parts insurance. It worked wonders. I will tell you something else that is working. The United States isn’t there yet. I am using alpha lipoic acid. In Germany where my husband is stationed they use IV alpha lipoid acid. I have a lot of drug allergies so they started me off slow. I ordered the pills through Krogers Pharmacy I could not find it on the shelf.
https://www.webmd.com/vitamins/ai/ingredientmono-767/alpha-lipoic-acid
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3 ReactionsI was given Benadryl and Cortisone as a child before the infusions
I have started using alpha lipoic Acid. In Germany where we are stationed they have had a lot of success with it by IV. I take it by mouth. I am not diabetic. I started on the pills to make sure I am not allergic to them. I am currently on 400 mgs. I have a ways to go.
I have seen the difference. I can tell when I take them and when I forget. I take it at 2:30 pm and am no longer waking up at 2:30 am. I couldn’t find them so I asked Krogers pharmacist to order them.
https://www.webmd.com/vitamins/ai/ingredientmono-767/alpha-lipoic-acid
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3 Reactions