IVIG/Gammagard – Low Immune System

13 Mar

IVIG 1

 

IVIG/Gammagard – Immune

Finally received my IVIG (Gammagard) supplies for my monthly home infusions. Just waiting on the nurse to call and set up the date she is coming to my house. I was supposed to do it last week the nurse was ready but the meds weren’t here yet. This will be my first time using any IV meds for my immune. My IgG has always been low for 5 years or more but my IgA was never low enough that insurance would cover IVIG so now it is low enough to get it somewhat covered. I will be paying $471.00 out-of-pocket for each infusion and that is after being covered by Medicare.

My IgG and IgA are low so we are hoping this will boost my immune and get those numbers up. I will start slow only doing one IVIG infusion every 4 weeks but that may increase in the future. Gammagard can cause headaches if you infuse too fast so the infusion for me will take about 4 hours but some can take up to 8 hours or longer. You are told to take Tylenol before hand. I will have an IV pump so they can keep the drip rate slow or low at the precise pace where I don’t feel the headache. There are many side effects with IVIG (fever, chills, muscle pain..) but many of them are already symptoms us lymies have daily so I won’t notice the difference.

Hope this helps me feel a little relief soon, I know it will take months before I notice anything.

 

IVIG 2

 

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10 Responses to “IVIG/Gammagard – Low Immune System”

  1. Brian March 14, 2014 at 9:42 am #

    49er, are you on growth hormone? I have had no problem getting coverage for it because of long-term Lyme. Bringing your igf-1 level up will help you sleep & feel just a little better. It hasn’t been a miraculous change for me but everything helps.

    Very interesting on immunoglobulins. I actually thought there were self injectable IGs but maybe not? Let us know how it goes.

    • 49erBry March 15, 2014 at 12:37 am #

      No they haven’t put me on a growth hormone yet but I always wanted to try it. I will ask about it next visit, thanks for the info. I was given the option of Sub-Q injections or the IVIG but the Sub-Q can make you swell and didn’t sound as good as the IV immune. I will update soon I’m getting my infusion in the morning my nurse is coming over. Hope you find some relief soon, I know not much helps with lyme.

      • Brian March 15, 2014 at 10:11 am #

        Yesterday I spent some time researching the new lab I am going to do. I have had (unexplainable) IBS for a while. I used to have good intestinal health but it has gone downhill the past few years. Multiple stool tests have come back negative for all parasites but apparently you can have bacteria buildup in the small intestines which is best detected via a breath test. This bacteria is apparently not killed by Lyme abx I have been taking (since those go to the blood) but rather drugs like rifaximin which have poor oral bioavailability and stay in the intestines. This could explain all my IBS symptoms and many of my other symptoms as well, and hopefully my cognitive problems. Check out ‘Small Intestinal Bacterial Overgrowth’ / ‘SIBO.’

      • 49erBry March 15, 2014 at 5:45 pm #

        Yeah you may have some sort of IBS or leaky gut going on from the treatment. I had IBS for about 10 years (pre-lyme DX & pre-abx) where I knew every bathroom in every city and I went to the bathroom 12-20 times a day. Once they put me on Norco for my knee surgery and back pain it causes constipation but for me it made me regular. So Norco was my miracle drug that helped my IBS. I tried everything for it before that. My colon was spastic and hated any food I ate. Turned out I also had 2 different parasite worms and liver flukes living in me from mexico. So if you are negative for parasites most likely it could be what you said. You prob need pre-biotic, good probiotic and enzymes? Hope you get it figured out and get some relief. I will check out SIBO, thanks.

  2. Amelia March 15, 2014 at 9:18 am #

    SubQ is much more tolerable and I’ve never heard of swelling. Occasionally you can get site reactions if not administered properly but the side effects are much more tolerable and you only infuse a small amount once a week or once every two weeks. SubQ Hizentra is half the volume of Gammagard IVIG so your body doesn’t have to absorb so much. With what you are already dealing with illness-wise you might consider trying a more tolerable therapy. Just an idea. Hope things get better for you!

    • 49erBry March 15, 2014 at 5:50 pm #

      Thank you for the feedback. I asked my nurse about sub-q today and she told me her patients have issues with it so they all get IVIG instead. She told me one guy (non-lymie) felt like he had the flu after sub-q. It’s weird how each body is different. I did well on the IVIG and I even got an extra 1/4 IV bottle full. But I know IVIG can cause the flu symptoms and other side effects. Thankfully I feel my usual self so far after taking it. 🙂 How long have you been on sub-q and how many before you started to feel any progress? thanks

      • Amelia March 18, 2014 at 4:51 pm #

        You’re right for sure everyone is different but it’s actually my mom that’s on it after switching from IVIG. Lots of people that I’ve met through the IDF (Immune Deficiency Foundation) absolutely love SubQ because of the flexibility and lack of side effects. My mom feels a ton better and once she got going it was amazing; no ups and downs with Ig levels and now virtually no side effects. The thing to remember that I was told is that many of the agency nurses are paid for IVIG visits as are hospitals so they’re invested in keeping people on IVIG. With subQ you get training and then don’t need nursing. Not saying that is what’s going on but is something to consider. Also I know the manufacturer is having a sample program now which is how my mom got started. She felt better after her first 2 infusions!!

      • 49erBry March 19, 2014 at 12:01 am #

        I talked to my doc and sub-q may be an option soon but for now we are sticking with the IVIG. But I am considering it and I appreciate your input I really do. I guess she just wants me on a high dose for now. With my IVIG I can chose to do the IV infusion myself next one if I want to but I chose to have the nurse come back. She trained me how to do it. I could be getting sub-q in the future so stay tuned. lol

  3. gina dela grande-Low November 13, 2014 at 5:47 am #

    Hi 49er bry, I too has very sick 6 times in the hospital or rush to it in anaphylactic shock min. 6x a yr.2 to 4 weeks at a time. i was that too, i do understand what you have been thru, i got worst, or shall I say the i got worst, i then went onto gammastan,for 4yrs, injected weekly. still continue hospital trips,and abs guts problems made no difference, in 2009 my nurse started me on hizentra, 8gms weekly. first year still sick, qurantine, and then i started feeling better, symptoms were still there, calming. down. for the first time in my life i been out the hospital 4 1/2 yrs.now.even with awful case of babebiosis, from lyme disease.been fighting it for over 25yrs. being severely allgeric to 80% of antibotics, and having leaky gut, mcs, fibromyagl: rapid heart problems, 2 heart attacks, from antibotics, the only lucky thing is absolutely no damage to my heart or blood vessels. my nurse help me get on in home infusion program support financial from infusion house, ssi, depended. you know there are financial programs available to with the cost. now with the babebiosis drugs, i got help from the drug companies. imperticularly mepron for the babebiosis which cost are 198k every 6 months. my red cells are being destroyed by the vector, and the other critors that are attacking my whites cells. there a bit of sunshine shining thru. but i lost over 30lbs, gut problem. 77 lbs, but i’ve got energy. bone structure damage occurred, but on pain meds, and its tolerable. i have a great nurse, her name is swe barron, very knowledgable, in all areas, where there a way she will find it, she got resourcres.she’s travels to various states to help patients ease with hizentra, sub-q is so much better. spunky1021

    .

    • 49er Bryan November 20, 2014 at 12:24 am #

      Thanks for the info. I’m so exhausted I am going to post a blog post and head to bed but I wanted to say thank you.

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