Hi @efgh1020
I am having an IVig in 30 minutes so I will say more later. I have neuropathy, I do so many things to relieve the symptoms, if you would like that list, I can post it again. My neuropathy increased in severity after severe allergy reactions, just to add to the 'could it be autoimmune' even though I have had chemo.
My neurologist and a 2nd opinion neurologist brought in by her diagnosed the cause of my neuropathy as an autoimmune reaction to either spinal fusion surgery for stenosis, medication, anesthesia, or infections unrelated to the surgery. The autoimmune diagnosis opened up a treatment of IVIG with immunoglobulin to combat inflammation in the nerves. It led over time to less pain, greater strength and range of motion—all in combination with simultaneous physical therapy.
I am trying to navigate IVIG for CIDP and Medicare coverage. My wife has a Medicare Advantage plan that she signed up for when she was declared disabled a couple of years ago. She is turning 65 in a few months and I would like to have her change to original medicare and a supplement plan like I currently have. She gets IVIG infusions every three weeks Gamunex-C. The infusion is done at her doctors office (they have a room with a few chairs for infusions) It is being billed under Part D and we are receiving copay help from the pharmacy that is providing the drug. What steps would she have to take in order to get coverage under Part B.
I am trying to navigate IVIG for CIDP and Medicare coverage. My wife has a Medicare Advantage plan that she signed up for when she was declared disabled a couple of years ago. She is turning 65 in a few months and I would like to have her change to original medicare and a supplement plan like I currently have. She gets IVIG infusions every three weeks Gamunex-C. The infusion is done at her doctors office (they have a room with a few chairs for infusions) It is being billed under Part D and we are receiving copay help from the pharmacy that is providing the drug. What steps would she have to take in order to get coverage under Part B.
Some local senior groups offer assistance working through some of the common medicare questions and concerns. Have you looked into any local groups that offer medicare information?
I have started subcutaneous IVIG, Hizentra, about 3 months ago. I had been diagnosed as having Common Variable Immunodeficiency, CVI, 9 years ago but the immunologist didn't feel I needed any treatment. This year a different immunologist disagreed, glad she felt the way I did, and now I am on the Hizentra. I have had non-stop diarrhea because of the CVI for the last 22 years, it can mimic inflammatory bowel disease, but 2 of my doctors said this treatment could possibly stop the diarrhea or at least improve it. So, my question is: Has anyone with CVI had improvement in their chronic diarrhea with gamma globulin treatment AND how long before you saw any improvement. Thanks so much for your input.
I have but I had to use Lomotil as well. I was diagnosed with CVID 30 years ago while I was in college. I got very sick and have had a heart infection as well as sepsis and other infections. I have been on IVIG until 6 years ago I started Hizentra subcutaneous. I am on 92 Grams which is a very high dose.
I take such a big dose for Neurological problems I have since I was in a coma for a month. I was also diagnosed with Sjögren’s Disease recently.
Will send her an email and I may see her on Thursday. As far as I know she needs to have monthly infusions forever as that is how IVIG works, but I know she had substantial relief in the first two days of her first infusion. It is idiopathic SFN and I think that the abnormalities were in the EMG and skin biopsy. There is a trial which I think is still recruiting right now at Brigham and Women's in Boston. You can contact Dr. Oaklander at MGH for information, not sure when they will be done recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8
I just had my IVid infusion. It is not for PN; it is for yet another (not going there) reaction to chemotherapy. I do many things to battle my neuropathy, this is effective in helping stay in check. If you have questions, I will try to answer.
There are other ways to pay for this.
The night before my IGG infusion I hydrate with fluids and that seems to help with the headaches. Please check with your medical team before hydrating with large any of fluids. Good luck
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You are so welcome! I forgot to mention massage, myofascial release, and swimming.
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2 ReactionsI do so much to help mitigate the effects of my neuropathy, there is not just one thing I do.
HAS ANTONE HAS EXPERIENCE WITH Radiofrequency ablation for pd?
Yes, please post ur successful treatments!
Thanks very much. I have autoimmune atrophic gastritis so maybe that would qualify me.
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1 ReactionI am trying to navigate IVIG for CIDP and Medicare coverage. My wife has a Medicare Advantage plan that she signed up for when she was declared disabled a couple of years ago. She is turning 65 in a few months and I would like to have her change to original medicare and a supplement plan like I currently have. She gets IVIG infusions every three weeks Gamunex-C. The infusion is done at her doctors office (they have a room with a few chairs for infusions) It is being billed under Part D and we are receiving copay help from the pharmacy that is providing the drug. What steps would she have to take in order to get coverage under Part B.
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1 ReactionWelcome @biker201, Medicare can be confusing and I'm always struggling with decisions. There is another discussion on your question that you might find helpful:
--- CIDP, Diagnosis, Treatment, Insurance - Medicare and Medicare Part D: https://connect.mayoclinic.org/discussion/cidp-diagnosis-treatment-insurance-medicare-and-medicare-part-d/.
Also, Medicare has a page on your question here:
--- Join, switch, or drop a Medicare Advantage Plan: https://www.medicare.gov/sign-upchange-plans/types-of-medicare-health-plans/medicare-advantage-plans/join-switch-or-drop-a-medicare-advantage-plan.
Some local senior groups offer assistance working through some of the common medicare questions and concerns. Have you looked into any local groups that offer medicare information?
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2 ReactionsI have but I had to use Lomotil as well. I was diagnosed with CVID 30 years ago while I was in college. I got very sick and have had a heart infection as well as sepsis and other infections. I have been on IVIG until 6 years ago I started Hizentra subcutaneous. I am on 92 Grams which is a very high dose.
I take such a big dose for Neurological problems I have since I was in a coma for a month. I was also diagnosed with Sjögren’s Disease recently.
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1 Reaction@articmark
Hi,
I just had my IVid infusion. It is not for PN; it is for yet another (not going there) reaction to chemotherapy. I do many things to battle my neuropathy, this is effective in helping stay in check. If you have questions, I will try to answer.
There are other ways to pay for this.
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1 ReactionI guess you got head acks from the IGG is that normal or just you. .