Mayo Clinic diagnosis of Gammaglobulin deficiency: Any tips?

Posted by foundryrat743 @foundryrat743, Mar 14 2:09pm

With a Mayo Clinic diagnosis of a Gammaglobulin deficiency, I have been told by my immunologist that I need to be on infusion therapy. Does anybody here have any idea of costs involved, considering that I am on Medicare, and I have a Medigap, plan F, policy, with a supplemental insurance company! I was told the medicine would come from a specialty pharmacy, and a nurse would come out, and teach me how to set up infusion treatments for myself! Any info. or advice that somebody could give me, would be appreciated!

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525gooze | @525gooze | Mar 16 9:36pm

In reply to @fbt217 "I started infusion therapy (IVIG) for myasthenia gravis, an autoimmune disease, in January. It’s once a..." + (show)

@fbt217 Hello, some of the infusion therapies are sub Q or under the skin and done at home. Hope this helps.

525gooze | @525gooze | Mar 16 9:46pm

Hello,
I am on IVIG and initially the Dr wanted me to be on a brand that I would do at home however my insurance which was private insurance then approved another instead which I go to an infusion center once a month for, not sure why. I am now on Medicare with a secondary and paid around 250.00 for my deductible the beginning of the year. I have paid nothing else each infusion. I think the first thing is what your provider would like you on then finding what brands are on your insurance formulary. Good luck and I hope you get the help you need.

foundryrat743 | @foundryrat743 | Mar 16 10:22pm

In reply to @525gooze "@fbt217 Hello, some of the infusion therapies are sub Q or under the skin and done..." + (show)

@525gooze Thanks! Yes, I realize that, and we are still trying to find out if I can do that with the medicine prescribed! ( I believe it’s labeled Cilantra ), originally was offered as an i-V type effusion! I have to do a couple more enquiries, before I make a final decision! Thanks for your good advice!

foundryrat743 | @foundryrat743 | Mar 16 10:30pm

In reply to @525gooze "Hello, I am on IVIG and initially the Dr wanted me to be on a brand..." + (show)

@525gooze Thanks for your very. valuable, experienced, advice! I will see what I can do to line the effusion protocol, so that it mirrors your treatment! I really do not feel I have the ability to do the effusion on my own! I drop things all the time, and have shaky, unsteady hands! After a stroke, my stability, balance, and dexterity is compromised!

foundryrat743 | @foundryrat743 | Mar 16 10:47pm

In reply to @foundryrat743 "@525gooze Thanks! Yes, I realize that, and we are still trying to find out if I..." + (show)

@foundryrat743 Hizantra is the name of the medicine, for my immune system!

foundryrat743 | @foundryrat743 | Mar 20 2:58am

In reply to @janeinnc "Medicare covers infusions at an infusion center, clinic, or,hospital; I can NOT imagine doing this at..." + (show)

@janeinnc Thanks so much for your wise advice! I followed your advice, and found a patient advocate, who is, as I write this, lining up an infusion center referral. for me, where a nurse prepares and administers fusion I-V therapy, for my chronic, inflammatory, legs, feet, arms and hands centered polyneuropathy, which will be treated with gamma globulin medicine. I have low levels of gamma globulin, according to blood tests! So, perhaps this will give me some relief, from the annoying shooting down my legs ‘buzz like sensation’, which feels like an electric current! Could this be related to a loss within the myelin sheath of nerves, or am I merely speculating? Anyway, the constant tingling and buzzing wears on a person’s nerves after a while! Hope this solution works for me!

foundryrat743 | @foundryrat743 | Mar 20 3:18am

In reply to @naturegirl5 "@foundryrat743 Like @minnesota10 I had monthly injections of Evenity at an infusion center. Not an infusion..." + (show)

@naturegirl5 Thanks for your wise advice! I appreciate your mentorship! I have applied your advice to my situation! After the Mayo Clinic diagnosis, I discussed your proposal to help me, with my immunologist! Thus, he prescribed the correct gamma globulin medicine, for me, and his nurse manager is lining up an I-V fusion facility ( Vivo ), near me, where a pro. nurse will set up, and administer the I-V fusion therapy, for the prescribed dosage, and time period! Also, she will make sure that Medicare, and Secondary Insurance approval of payment for services rendered, is taken care of. So, she said she wants to make it stress free, for me, and that others with my same or similar diagnosis, have been approved by their insurance companies, so she expects I will be approved to! This would be a big burden lifted off my concerns, because it seems like my inflammatory polyneuropathy is creeping further up my legs and arms, and the electric shock like buzz feeling that I get, in my legs, is more pronounced! So, I need help and relief soon! Thanks a million for your advocacy and wise advice! I will be forever indebted to you for your help!

Helen, Volunteer Mentor | @naturegirl5 | Mar 20 10:46am

In reply to @foundryrat743 "@naturegirl5 Thanks for your wise advice! I appreciate your mentorship! I have applied your advice to..." + (show)

@foundryrat743 Thank you so much for letting me know that my recommendations were helpful to you. These are my experiences with my medical providers at Mayo Clinic where I find the staff follows through. My endocrinologist ordered my Evenity injections and my Reclast infusion and sent the prescription to an infusion center closer to me. It was all so seamless for me and I was so appreciative.

I'm also happy to know you will go to a local infusion center where you will then get your medication IV and the nurse is setting it all up for you. At this point I am hoping that all you will have to do is to show up for your first appointment!!