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Where to get IVIG

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by jlynx, Jun 30, 2015.

  1. jlynx

    jlynx Senior Member

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    Hello,

    My doctor approved me to start IVIG treatments for Parvovirus B19, however, my insurance doesn't cover it there since he is out of network, so it is way too expensive for me. I've been looking for other places that perform IVIG that take insurance. I tried a hematologist and they won't do it since my reason doesn't fall under hematology.

    I've now booked an appointment with a rheumatologist who does IVIG. But he has to approve it before I can get it of course. Rheumatology deals with immune system disorders, so do you think I would be able to get the treatments there? Or where else would I possibly be able to get it done? Anyone familiar with IVIG, please help. I am in southeastern PA.

    This is so frustrating.
     
    Last edited: Jun 30, 2015
  2. Ema

    Ema Senior Member

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    Denise likes this.
  3. Denise

    Denise Senior Member

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    You might try an immunologist or infectious disease specialist (though the wait for ID docs can be several months).
    Insurance companies tend not to like covering IVIG since for many (immune deficiency) indications it is done monthly, for life.
    You might also try stressing to your insurance company that this is a short term indication and provide them with references (these are just two that I found in a quick search
    http://cid.oxfordjournals.org/content/36/9/e100.long

    http://emedicine.medscape.com/article/961063-treatment)
     
  4. *GG*

    *GG* Senior Member

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    If you were in Massachusetts, I think I could suggest a Dr. Care to share?

    GG
     
  5. jlynx

    jlynx Senior Member

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    Unfortunately I am in southeastern Pennsylvania.
     
  6. Misfit Toy

    Misfit Toy Senior Member

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    @jlynx -I am also in Southeastern PA. I had IVIG but for CVID. I am not sure why you are getting it. My diagnoses is CVID. Rheumatologists can't prescribe this unless you have a rheumatoid issue. They can't prescribe it so much for immune. An immunologist is needed. I have Sjogrens, but my rheumie will not prescribe it unless he works with my immuno. I am not wanting to try it again.

    Did you have the vaccine challenge? That is the tried and true way to have it prescribed . IVIG is extremely expensive. I believe it's between $15,000 to $30,000 per treatment so insurance goes over the reason with a fine tooth comb.

    I am not sure where you live, but I know of immunologists what will fight for you to get it, if you truly need it, but you must have the vaccine challenge and fail it. I can tell you no one will prescribe it around here without that.

    Immunologists usually are the ones dealing with parvovirus. I am not so sure that a rheumatologist will deal with that.
     
  7. jlynx

    jlynx Senior Member

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    Hi,

    That is discouraging. I read some people on various forums were able to get it through a rheumatologist, that's why I had some hope I would be able to get it. I need it to treat Parvovirus B19- it is the only treatment for it and a potential cure. I will go to my appointment but in the meantime I may schedule an appointment with an immunologist. Someone pointed me to one in Philly.

    Can I ask why you don't want to try it again? Did it not work for you?

    And I'm not familiar with the vaccine challenge, what is that?
     
  8. Misfit Toy

    Misfit Toy Senior Member

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    I stopped it because I became horribly sick from it. I was having migraines, nausea and feeling worse than the current illnesses I have. I had a rash all over my body that came on. The longer I was on it, the worse I got. There are many people who do fine on it, I was just not one of them. I was pulled off of it because my kidneys started being affected by it. My immunologist who is in Philly at Penn was like..."Okay, that's enough." My BP was sky high on it, my heart rate. I hated it and would have to be dying to do it again.

    The vaccine challenge is where they give you 2 vaccines. For me, it was tetanus and pneumovax and then a few weeks later they test your antibodies. They see if you mount a response to it. I did not. Especially the pneumovax. If you don't mount a response, it means your IGG is really low which mine was and it's just not working.

    I was told by 2 immunologists that I had to have the test in order for insurance to cover it. A rheumatologist does it also, but you must have neuroapathy and horrible horrible pain. It's hard to find a good rheumy to do it, but it does happen. It's a lot of work on their end to get it approved.

    Does parvo cause major symptoms for you? What are you symptoms? Sometimes to be honest, the doctor's code it in a way to get you IVIG. It's all about codes. Because I was diagnosed with CVID, it had to be the vaccine challenge test that my doc sent to the insurance company and I got it right away.

    If it's for pain or parvo, it could be a little bit harder to get covered. Like I said, it's so expensive, they really don't want to have people on it. Even people with CVID that have infections all of the time...Blue Cross is notorious for just kicking a person off and that person has to fight tooth and nail to get it again.
     
    Kati likes this.
  9. Ema

    Ema Senior Member

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  10. jlynx

    jlynx Senior Member

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    Wow, I thought it would be a little easier to get it now. The parvo is potentially the cause of my CFS. I also have HHV-6 which I'm treating with Valcyte. I don't believe I'll feel a difference until the parvo is treated. There are several studies where people are cured from it. Low dose treatments at my doctor (out of network) would be $700 per treatment.

    I have all the CFS symptoms: very fatigued and weak, poor sleep, PEM, cognitive dysfunction, swollen lymph nodes, etc.

    I did look it up on my insurance company's website and it said IVIG for Parvo is possibly covered under immunodeficiency syndrome. So I'm going to cross my fingers. This is ridiculous that you have to jump through so many hoops to get it.
     
  11. jlynx

    jlynx Senior Member

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    Not sure about that; it is worth a try. I will give him a call.
     
  12. *GG*

    *GG* Senior Member

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    Hmm, think Dr Enlander of MGH? would prescribe it for small fiber poly neuropathy, if I recall correctly.

    GG
     
  13. jlynx

    jlynx Senior Member

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  14. Ema

    Ema Senior Member

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    Typically allergist immunologists don't have much experience with IVIG. Make sure to ask specifically! You would be better off with a clinical immunologist if you can find one.
     
  15. jlynx

    jlynx Senior Member

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    The receptionist couldn't tell me and the doctor isn't in until the 7th so I will find out then... He is a member of the Clinical Immunological Society, and was in a list from the Immune Deficiency Foundation so there's a good chance he does. Hopefully there's not a long wait. Otherwise, I will have to go to Philly.
     
    Last edited: Jul 1, 2015
  16. jlynx

    jlynx Senior Member

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    Good news. The immunologist in Exton prescribes IVIG. My appointment is for next Thursday, hopefully it goes well and I can start soon.
     

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