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Informal Survey re: IVIG

Discussion in 'Immunological' started by Gingergrrl, Jun 23, 2016.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I know we have several threads on IVIG but now that my doctor has just sent in the pre-auth to my insurance, I realized that I wanted to do a quick survey to compare people's experiences and have the info all in one place.

    If you have ever done IVIG, I would love to hear your answers and thank you all in advance!

    Here are my questions:

    1) What brand of IVIG did you use and did you have any side effects?

    2) Did you do the immune deficiency dose or the higher autoimmune dosing?

    3) If you remember, what was your exact dose and infusion speed per infusion?

    4) How frequently were your infusions (once a week, once a month, etc) and did you have an initial "loading dose?"

    5) Do you have MCAS and if so, did you get any allergic reactions to the IVIG?

    6) Did you take any pre-meds prior to each infusion and if so, what were they? (i.e. Steroid, H1 and H2 blocker, etc)

    7) How long in duration did you do the IVIG (three months, six months etc?) or is it ongoing?

    8) Are there any tips to getting insurance to authorize?

    9) Did you do IV saline or dextrose solution with the IVIG?

    10) How much water did you drink on day of IVIG and day prior?

    11) Did it ultimately improve your symptoms and if so, which ones? And on flip side, did it not work or worsen your symptoms?

    12) Is there any key info or tips that I am forgetting?

    Thank you so much for any responses!
     
  2. Vineyard1

    Vineyard1

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    Greetings!

    The answers to your questions are as follows:

    1. I use Gammaguard and after my first two infusions I had severe head pain and hip bone pain.
    2.The immune deficiency dose of 40 grams
    3.The infusion speed is 100ml/hr resulting in a 4 hour infusion.
    4.I have IVIG at the Clinic every 21 days, since last October. The first two infusions were 20gm each over two hours then increased to 40 gms.
    5.I do not believe I have MCAS.
    6.I take 2 Advil before I leave the house and then upon arrival the Nurses give me Benadryl 25mg and Tylenol 650mg a half hour before they start the infusion.
    7.Ongoing treatment...
    8.The Physician sent three years worth of low Total IgG and low IgG1 as well as low Natural Killer Cell Activity with documentation of infections. They approved it almost immediately for up to one year. I will have to seek authorization from them again before this October.
    9. After having such severe side effects with the first two infusions, I receive 1 liter of N/S with the Gammaguard and I have had no further problem with side effects.
    10.I drink 3 liters of fluid the day before, the day after and 1500ml the day of IVIG as I am already getting 1000ml from the Normal Saline and 400ml with the Gammaguard.
    11. It is helping with the infections. They are not gone but reduced in frequency and severity.
    12.It is expensive with my insurance and I end up paying up to the catastrophic limit of $ 5,000 per calendar year.

    If you have any other questions please don't hesitate to ask.
     
    justy likes this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    @Vineyard1 thank you so much for your detailed responses and I do have another question re: the dosage and my lack of math translation skills!

    My MCAS doc said the immune deficiency dose is approx 400-500 mg/kg and the autoimmune dose is approx 1000-2000 mg/kg.

    So it goes by weight and my closest current weight is approx 120 lbs which on internet I translated equals approx 54 kg.

    I cannot figure out how to relate this number to your 40 gram infusion? I Have been playing around and dividing or multiplying different things but not getting anywhere near the numbers I was told.

    Do you know how I would calculate the ratio? I plan to start very slow and build to the autoimmune dose and b/c of MCAS my infusion would be 8-10 hrs long with pre-meds etc but still can't figure out the numbers!

    Any help to the math challenged would be great!

    ETA: Lastly I've been told by several people that with Gamunex (what I think I'll be getting but not certain yet) that saline clogs the line and causes crystallization so they'd use dextrose solution instead or nothing. It sounds like Gammaguard doesn't have that issue and saline is okay?
     
    Last edited: Jun 24, 2016
  4. justy

    justy Donate Advocate Demonstrate

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    As you know ive not been able to do the IVIG, but have instead been doing SCIG but at very tiny doses so in case its helpful I will answer below, just in case it helps you.

    1) What brand of IVIG did you use and did you have any side effects?
    Gammanorm - yes. Severe dizziness for three weeks after initial two injections at MY prescribed dose.

    2) Did you do the immune deficiency dose or the higher autoimmune dosing?
    Not applicable - although I do have a positive ANA - ive not been able to do a high enough dose.

    3) If you remember, what was your exact dose and infusion speed per infusion?
    I am prescribed 3ml of Gammanorm twice weekly. This dose is too high for me -it made me herx like crazy and I was very ill for a few weeks while it wore off.

    4) How frequently were your infusions (once a week, once a month, etc) and did you have an initial "loading dose?"
    I am on twice weekly injections

    5) Do you have MCAS and if so, did you get any allergic reactions to the IVIG?
    Yes I have MCAS, and yes I have had some allergic reactions, but not to every vial. Even though my batch numbers are the same on every vial I bought only two have caused problems. Both caused atypical anaphylaxis which lasted around two hours. Other vials have had no effect at all. I also had a very strong herx reaction when trying to up my dose. I have a number of bacterial infections, plus bacterial translocation, so this is probably why. I got severe head pain, severe joint ahces and felt like I had terrible flu, but without the cough or nasal congestion etc.

    6) Did you take any pre-meds prior to each infusion and if so, what were they? (i.e. Steroid, H1 and H2 blocker, etc)

    I regularly take an H1, H2 and mast cell stabiliser and vit c anyway. I have an Epipen just in case...I wouldn't take steroids regularly due to infections and I react to prednisolone.

    7) How long in duration did you do the IVIG (three months, six months etc?) or is it ongoing?
    Ongoing.

    8) Are there any tips to getting insurance to authorize?
    Not applicable

    9) Did you do IV saline or dextrose solution with the IVIG?
    Not applicable.

    10) How much water did you drink on day of IVIG and day prior?
    Same as usual.

    11) Did it ultimately improve your symptoms and if so, which ones? And on flip side, did it not work or worsen your symptoms?
    Generally improves symptoms - improves fatigue a little, PEM a little and keeps me out of being bedbound, even at tiny doses. Only worsens if I take too much or have a vial that doesn't agree with me MCAS wise.

    12) Is there any key info or tips that I am forgetting?
    Nope.
     
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  5. Sushi

    Sushi Senior Member Albuquerque

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    1 gram = 1000mg. So your target dose for immune deficiency would be about 22 - 27 grams and your target dose for autoimmune would be 54 - 108 grams.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Thanks Justy and my docs all agreed that SCIG could never get high enough for the autoimmune dose (which is my ultimate goal) so not an option for me.

    Am confused what my dose will be but I believe they are first trying to get insurance approval and then decide on brand and dose. I am limited to certain brands b/c of the MCAS but that is okay (b/c of preservatives or additives.)

    When my MCAS doc said the MCAS itself or autoantibodies could be causing neuropathy to my phrenic nerve and trying to modulate (and later eliminate) them could help my breathing, it was the most hope I had felt in probably two years so I am all in for this treatment.

    I'd take the pre-meds 30 min before, exactly like I do with food and then assume they administer them again if needed?
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Is there a formula you used to get those numbers? I played around with it for quite a while before asking but got nowhere! Wouldn't the final number be what he quoted (400-500 for ID dose or 1000 to 2000 for AI dose?). Which part am I going wrong with? I know I am wrong but not sure where!
     
  8. Sushi

    Sushi Senior Member Albuquerque

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    If you open a chat with me I'll explain.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    Only have my phone right now and chat doesn't work on phone but my husband will be here shortly and am fairly certain he will easily grasp it. If not... Will be chatting with you from my computer later. Thank you so much for the offer!
     
  10. Sushi

    Sushi Senior Member Albuquerque

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    Multiply by your weight.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and we figured it out. I guess this is an example where when the algebra teacher said the material would be useful later in life, she was correct LOL. Am grateful to have a context now so if insurance offers a certain dose, I will know what it means.

    My MCAS doc said the entire infusion is 300-500 ml of fluid to be infused very slowly so I think I have a chance of tolerating it (and if allergic to one brand, can try another.) I think insurance approval for the autoimmune dose is my biggest hurdle b/c of the sheer cost.

    If any other IVIG users out here are able to respond to my little survey so I can compare info, that would be awesome and thank you Sushi for helping me with the calculations!
     
    Sushi likes this.
  12. boohealth

    boohealth Senior Member

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    You want Gamunex instead of Gammagard because its physiologically more tolerable (glycine) and not in dextrose and with added sodium. Get Gamunex if possible, and flush line with a dextrose solution if need be.
    I do not necessarily think even severe conditions need these high doses. I personally found my body did best with 2.5 to 3 grams in a dose. I used to get them weekly when I could afford them. Now its every 3-4 weeks. I always notice a good effect.

    IVIG will thicken your blood for the 3 or so weeks that it lasts in your body. There have been thrombotic events. It would be more likely with a high dose such as you are indicating, and if given all at once (OMG).

    Infusion should be very slow. Nurses will be annoyed but too bad. Hydrating with a different IV ahead of time is very helpful. I suppose an isotonic saline IV would be most useful for that, but then they'd have to change lines and they wouldn't be happy.
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    @boohealth I just saw that my pre-auth request states "Gammaplex" which I had not heard of. Do you know how that one compares to the others? My request is complex b/c the doctor trying to get this through insurance is not the doctor who will be administering it (although they have spoken to each other re: the issue.) So I assume if they get insurance approval, they can switch brands if decided to at that point.

    My infusion rate will be super slow (like 8-10 hours) b/c of my MCAS so am not worried about that part. It's being done at the infusion center/hospital where my MCAS doctor works and he only does very slow infusions for his MCAS patients. I will also start lower and it is doubtful I would ever even reach the autoimmune dose. I do better with smaller doses of everything so the immune deficiency dose may be equal to an autoimmune dose for me. And I know my doses would be 3-4 weeks apart and not weekly.

    I know it is potentially risky but am truly at the point that if it can help my breathing, or whatever these autoantibodies might be doing, it is worth it to me (and the lesser risk IMO compared to starting with RTX or plasmapheresis, but I could of course be wrong!)

    I really struggle to drink water so this part will be hard for me to hydrate the days before, during and after but will find a way to drink whatever amount my MCAS doc recommends.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Am curious if anyone knows how Gammaplex compares to the other brands or has ever tried it. I wrote this above but wanted to post it as a separate question in case it got missed. Many thanks.

    ETA: No longer need this info and it was a miscommunication and we will be asking for Gamunex after all which is a relief to me.
     
    Last edited: Jun 25, 2016
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  15. justy

    justy Donate Advocate Demonstrate

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    Ginger - did your M.E doctor ever find any reactivated viruses or bacterial infections in you? if yes then this might affect your response to IVIG, as I said above I had a really severe herx reaction, and I know this can happen with some people with PID and CVID who have unresolved infections.

    I know you are uncertain about your diagnosis, but many PWME don't tolerate high doses of meds. If you need the lower dose then in fact SCIG can be very useful as it can be administered at home - many people who used to use IVIG for CVID or PID now use SCIG at home. It keeps the immunoglobulins at a more constant rate in the bloodstream over time, whilst IVIG users find they get peaks and troughs. Also less risk of aseptic meningitis as the same dose can be given over one month, rather than all in one go. (I hope this makes sense, and really not to worry about now, just info for the future.
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    Thanks Justy and everything you said made perfect sense and another PR friend just sent me an article yesterday comparing IVIG to SCIG.

    In my case, all three docs involved think my immune system is in autoimmune hyperdrive and said I could never get a high enough dose from SCIG. The dose they proposed is actually much lower than the true autoimmune dose but a bit higher than the immune deficiency dose so it seems like a good start.

    My other fear, and my docs agree, is that b/c I am an anaphylaxis risk, I would not be safe to do at home (even with a nurse) vs. at an infusion center at a hospital. And since it's the hospital where my MCAS doc works he said the nurses are really trained in this issue and would stop the infusion immediately if there was a problem vs. if I injected something and was allergic, it seems like not much I could do except EpiPen (which I have so far avoided thank God and scares the crap out of me) vs. at hospital they could give IV Benadryl immediately etc.

    But maybe after several months, I could switch to SCIG for maintenance... Do people ever do it that way? I actually hope to try RTX down the line after several months of IVIG (assuming my insurance even approves anything which I still don't know!)

    I really want the opportunity to try this and have heard of people making great improvements after knocking down the autoantibodies (even helping the MCAS part too.) Am hoping it will help my breathing, muscle weakness and dysautonomia. I realize it could be another epic fail but am going in with eyes wide open this time.
     
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  17. Vineyard1

    Vineyard1

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  18. Vineyard1

    Vineyard1

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    Initially, I was receiving Gammaguard every 4 weeks with little effect. He wrote for it to be given every 3 weeks and that frequently has resulted in some improvement. He did tell me that 40gm IV every 3 weeks is the maximum dose he can write for regarding weight (130lbs.) and interval-3 weeks. Gingergrrl...do you think you could provide the link your friend gave you that compares IVIG to SCIG.
    I have not found the IVIG helps me, thus far, with a new onset of POTS (began 9/2105, +TTT) which has rendered me primarily housebound.
    Sending healing thoughts!
     
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  19. helen1

    helen1 Senior Member

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  20. Gingergrrl

    Gingergrrl Senior Member

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    Thank you Vineyard and Helen for the additional replies and will respond tomorrow and also post the link you requested (vineyard) re: IVIG vs. SCIG.
     

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