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Documentation of negative response on IVIG or Gammaglobulin Replacement

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Misfit Toy, Mar 19, 2014.

  1. Misfit Toy

    Misfit Toy Senior Member

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    A while ago, I wrote about troubles with IVIG or at the time, Hizentra. Briefly, I was diagnosed with CVID back in the fall and low igG and low igA. Before I started the treatment, I was quite sick. That's why I pursued it. However, after being on 5 months of treatment, I am much much sicker. I want this documented because from what I can see, many are too scared to come out and share how they may have the same experience for fear of being a Debbie Downer.

    I wrote about this on the CVID board on FB and many could relate, but interestingly, many felt the need to private message me instead saying that they didn't want people to shun them for reporting such adverse experiences to IVIG or SubQ of gammglobulin. No one should feel that way and more importantly, no one should try to make them feel that way. If you have a good experience that is great, but there are many who don't and that doesn't mean we are negative people.

    The first 2 times I did Gammaguard IVIG, I was fine. The 3rd and 4th sent me into explosive pain. The pain was so bad after the 3rd infusion, I had to go on prednisone. For 4 days. That's not normal or right. I also had a rash that went nuts. Turns out though, that I also had a case of walking pneumonia which probably was aggravated by the IVIG. That is supposed to be the case. IF you have an infection, you will get worse with IVIG. However, my doctor did not regard my symptoms bad enough, even if I called him 2 times in one week with a fever. An immunologist who is against giving antibiotics. WTF. Anyway, with my lymphocytes being low, my WBC's, being high...he pretty much dismissed it.

    After the one I had last week, I felt fine for a few days, but since then have broken out in an all over body rash that looks like little pimples and my eczema went nuts. Also, I have warts now on my left hand and last night a whole toe nail fell off. I didn't even know until I found it on the rug in my living room. My skin has zero color in it, except it's not white, but a sallow color.

    I went to the immunologist and he said he had no idea what is going on. I suggested subQ, but I have zero desire to try anything at this point. This is too much and my body is clearly not handling it. My heart is flying and my blood pressure is very high also. Interestingly enough, the day I had the IVIG, my blood pressure sky rocketed 2 times and they finally had to stop it. By the end of the IVIG, my throat was closing and a cough came on. And, I can't sleep. Nope. Or, when I do, I get up at 1 pm the next day. Crazy.

    Most people with CVID ask me if I am taking benadryl, tylenol and the normal meds that you take for this. YES. And, I am floating in water from drinking so much. That is the protocol you are supposed to follow while doing this.

    Clearly, I am much more ill than many with CVID. I don't think my liver and my kidney's can handle it. As always, I am not your typical case and couple that with adrenal burnout of exhaustion and you have a failure indeed.

    My bed is my best friend right now, which is not like me. Everything aches and I am itching to death. I am popping antihistamines like PEZ.

    I clearly have an immune disorder. Low igA causes all kinds of problems. GI distress, food allergies, etc.

    And I have developed them over the years. I used to be able to eat pizza all of the time. Now, every single food item that makes up pizza makes me deathly ill. Milk gives me absolute full on diarrhea in minutes. I used to eat BOWLS of ice cream.

    Where do I fit in? Nowhere. Many with CFS have allergies, but not many have them like I do. Minerals, pills, meds, foods, everything is a possible danger to my system. The methylation protocol, I could do it back in 2007, but now now!

    I went to an acupuncturist today who said, "It must be a protein in the IVIG. But from looking at your tongue, you have kidney deficiency." And, of course, she can cure me! Yes, she will get me well. I sit there and think..gosh, I am so negative because I think that is hogwash. 25 years...no cure my friend. The body has broken down significantly because no one knows what is up with my body. Point blank. So, because no one can figure it out...it seems a little too late now. When ever anyone finds something, they always think they can CURE me. The IVIG will CURE you. Yes, that's what I was told. From my first immuno and then from her office manager who was reporting these awesomely wonderful responses of folks. I was careful to not get my hopes up as I know I am not the usual person.

    And I am going to say this and some will think, gosh, how morose; the only hope I have, is that CVID and an immune disorder in general can cause cancer, but especially CVID. Lymphoma. May it happen, God. Please. End it. Enough. Enough with the treatments and the never ending expense and the surviving but not living. May I go on to the next life. Bring it. Or, if there is no next life, may there be an end to the pain, the rash, the feeling misunderstood; all of it.

    And for those who judge me for that last line; I am sorry you feel that way. I am glad you are better. But, I am not. And it's okay to say, I want this to end. Whether that means that I want to get WELL, or better so that there is a bearable existence, or I want this to just end. Let it be. It's being real, it's being honest and it's saying....enough is enough. I don't want to just survive. I want to thrive.

    I dream of dancing, traveling and a life. A life with love, no pain or less pain and an existence that is full of vitality. Not this.
     
    merylg, peggy-sue and Tito like this.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    So sorry to hear about all this MisFit, hope it gets better : ) Hope you have not reached the end of your rope!

    GG
     
  3. Misfit Toy

    Misfit Toy Senior Member

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    @ggingues , I wish there was an end to the rope. I would totally jump off. Still here, still researching, for what...not sure.

    Hey, I have not gotten your CD's out yet. I am sorry. Too sick, but will do so.
     
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Please hang in there!

    GG

    PS Do it when feeling better/you have the energy! :)
     
  5. daisybell

    daisybell Senior Member

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    So sorry that you are having such an awful time. I don't know that there is anything I can say to make things any better, but please do know that my thoughts are with you. Your posts on here are important to me and I am sure to many many others, so if it is any comfort, please know that your insights and ponderings are valued, even if you are feeling so bad. :hug:
     
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  6. PNR2008

    PNR2008 Senior Member

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    I have felt like you and what I did right or wrong made me feel better. Stop what you think is making you sick, if you can at once, if you can't taper off. This is to keep in mind that some drugs may take time to wean off.

    If the IVIG isn't working, at least you tried now rest and when you feel strong try something else. I was reading my journals from 1989 (Do you BELIEVE it?) I was sick of injecting myself with B12, Folic Acid and Kutipressin also Homeopathic meds from Germany. I still took supplements, tons.

    I had an instant reaction from interferon B. B for BAD. Do what you think is best and good luck.
     
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  7. peggy-sue

    peggy-sue

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    :hug:

    Hang in there :love:- you're feeling utterly rotten, but you haven't half been through the mill recently!

    You've been really brave in giving this desperately serious treatment a really good go. :thumbsup:

    Sadly, it's not helped in any way - but has added a lot to your emotional turmoil because of hormones going haywire too.:(
    You need time to get over this horrible stuff.

    I wish I could come over and just punch your lights out until you feel better - so that you don't have to go through the getting there bit!:p :hug::hug::hug:
     
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  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Thanks for the laugh, hopefully MT takes it the same way!

    GG
     
    Misfit Toy likes this.
  9. peggy-sue

    peggy-sue

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    :nervous: so do I!

    ;)
     
  10. Misfit Toy

    Misfit Toy Senior Member

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    I loved it!! Punch my lights out, please!!!

    It takes 26 days to get out of system and maybe longer. I am in the 11th day. I am finding other people who had similar problems. Thank God. I am not alone after all.
     
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  11. PNR2008

    PNR2008 Senior Member

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    Me being the independent sort, tried to punch my own lights out. It's very difficult and I didn't succeed.
     
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  12. PNR2008

    PNR2008 Senior Member

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    @Misfit Toy A person on Inspire EDNF tried 3 different kinds of IVIG, and the best was subcutaneous shots he gave himself. PM me if interested.
     
    Misfit Toy and peggy-sue like this.
  13. peggy-sue

    peggy-sue

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    11 days served, and now behind you. You're getting through it.:hug:

    It must be a great relief knowing others have also ended up suffering as you are, but sorry that they had to go through it too.
     
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  14. Misfit Toy

    Misfit Toy Senior Member

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    @PNR2008 , that's the next thing that is being suggested. I have to meet up with a better immunologist because mine is really not too familiar with CVID. Went to a dermatologist today and tomorrow it's going to my primary CFS doc. See what he has to say about liver enzymes being high and other stuff. Today, I was able to get out and walk. You know things are better when you can leave the house. That's so crazy for so many of us and not normal for me, but today I bought myself some flowers and watched "American Hustle" which was really good! Got a good giggle in there!

    I want to know how you are, too. HI PEGGY SUE!!
     
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  15. peggy-sue

    peggy-sue

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    Hey, you're sounding more cheerful today!
    Still lots of ups and downs, but at least you're getting a few wee "ups". :balloons::thumbsup::angel:
    (Hang onto them if it goes bottom-up again. :nerd:),

    You've served 12 days of your sentence now, nearly half-way there, and very soon, over half-way there!
     
    Misfit Toy likes this.
  16. Misfit Toy

    Misfit Toy Senior Member

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    It's a beautiful day. At docs, near a lake. In a very good mood today. Could change after meeting CFS doc! He only gives me 20 minutes for what should be an hour to figure out this puzzle!!
     
    peggy-sue likes this.
  17. peggy-sue

    peggy-sue

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    We had a little sun today, but still a bitterly cold wind. All 3 of my rhubarb plants are growing, I even have a little rhubarb from two already - not enough to use yet.
    However, I am quite convinced that winter is suddenly going to appear from nowhere and bury us under several feet of snow. My rhubarb will die and we won't get to enjoy much of it.:(

    I hope your doc isn't going to charge you for more than the 20 minutes you get, MT, if it's supposed to be an hour!:wide-eyed:
    I shall tie myself in some silly knots for good luck for you that it will go well.:p
     
  18. maryb

    maryb iherb code TAK122

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    @peggy-sue
    yes snow is on the way for you......
    always like to be the bearer of good news:)
     
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  19. peggy-sue

    peggy-sue

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    Much softened by the cute pup in your pic, @maryb
     
  20. Misfit Toy

    Misfit Toy Senior Member

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    Yes, we are getting snow here on Tuesday. Unreal and very rare for this location!! What a winter. Let it be over. It's amazing how that great big ball in the sky can make everything somewhat better!
     
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