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Low IgG and IVIG Troubles.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Misfit Toy, Nov 14, 2013.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I know not many on here have tried IVIG or Sub-q methods of treatment for the immune system. This past summer I was diagnosed with low IgG and low IgA with the CFS. I have had CFS for a long time.

    Almost 2 weeks ago, I started IVIG treatment which is supposed to replace the immune system that I don't have. I have had a cold for over 2 months and my health has completely gone down hill in the past several months. I go grocery shopping and that's about it.

    The IVIG treatment made me quite sick. The first dose was a 3 hour dosage called a loading dose. The side effects are migraine, headache, flu, vomiting, and absolute exhaustion. No one from my doctor's office told me of these side effects. They made it sound like a walk in the park. It's not. Another huge side effect, or something that I am seeing happens often is aseptic meningitis where people have to hospitalized for a week.

    This week I had sub-q of Hizentra. For me, it brought me one step closer to the grave. I had to have 3 needles put into my stomach and it took forever to infuse. There were problems with the pharmacy and the nurses didn't really know how to do it. However, it was the responsibility of the doctor's office to make sure they had the right nurses and materials for the job.

    After the sub-q, I became very ill. I mean very ill. I woke up because of a migraine, began itching and had massive amounts of diarrhea which this has now happened again. The runs occurred after Privigen, too. I have had the shakes, can't get warm, I am walking around with a coat on, and I have fever blisters all throughout my mouth. I look white. Like beyond pale.

    The more I learn about IVIG, the more I am convinced that this is serious stuff. I have become a member of a support group that speaks candidly about the side effects.

    I know that maybe a few have done IVIG here or sub-q and are doing well, but I am not so sure if I can continue. Anything that makes you that much sicker, and not just for a day or 3 but for a week seems barbaric to me and how much sicker do I have to get? The fact that so many have developed meningitis from it makes me quite nervous. I keep thinking about euthanasia. I am just so sick from this.

    I literally had to tell this immunologist how to run an IV, from what i learned online. She didn't know and just agreed with me which made me really not trust her. Aren't you supposed to know this? Why am I telling you? She told me that none of her other patients have side effects, which I think is a bunch of bullshit.

    I am very sensitive to meds. The fact that this is heavy duty is majorly upsetting. I am thinking that with my low iGg or igA being low...I may just have to live with it. Yes, I get chronic infections, but this therapy seems barbaric. The sub-q with sticking what feels like tacks into my body and then I look distended afterwards, or the IVIG where I go to the hospital and they infuse there for a full day every 3 weeks. Talk about time consuming. Then, you have a week of not feeling well.

    I went to the doctor yesterday (an immunologist) who told me my heart was completely flying and I have major tachycardia. Today, I had to have an EKG and it came back abnormal, so off to a cardiologist I go. I didn't have this before Hizentra. It's like a stampede of horses is riding on my chest. She said for sure, no more Hizentra and she wanted me to stop the IVIG all together, which upsets me to a major extent because I am not sure what my options are at this point.

    Does anyone feel me on this? Would you continue a therapy that is making you super sick, without really knowing if it will make you better? I mean, how much sicker does one have to become before getting better? I am quite tired of, "You may get worse before getting better." What if you are already too sick? When something gives me a migraine, the runs, no appetite, flu like malaise and exhaustion and an inability to even walk around my apartment without feeling dizzy and then on top of it problems with my heart.....geez. I just feel too ill for this.

    I want this documented for anyone who may consider IVIG. It's not easy. It sounds great. It sounds like you will get your life back and maybe you will, but those with CFS with sensitivities and already feeling super ill....it might bite you in the behind.

    I really want to get my igG up and igA without having to do this major treatment.
    Beyond likes this.
  2. Daffodil

    Daffodil Senior Member

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    hi misfit. i am sorry you are going through this. there is a woman in a yahoo group who says she has taken IVIG for decades and it has kept her CFS at bay so that she can live close to a normal life...but there don't seem to be too many people who have tried it..perhaps it is hard to get covered by insurance.
    Misfit Toy likes this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    Daffodil, thank you. Haven't given up yet, but having a difficult time. It's very hard and I need to find the right dose via an immunologist. I don't think many get it with CFS because yes, it is hard to have it covered by insurance unless you have low igG and low igA. Or, at least low igG. If you have that, it's covered.
    Last edited: Nov 15, 2013
    vli likes this.
  4. br64cats

    br64cats

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    HI, Misfit. My daughter gets IVIG for CVID and she has had all the problems you describe above. I am so frustrated with her doctor because she insists it is not from the IVIG and implies that it is due to "her other issues". My daughter switched recently to sub Q weekly because she always felt like crap after the IV method but now she feels twice as bad and it lasts longer than it did from the IV way. I have wondered if the infusions really make that much difference and whether they are worth it myself. I don't have any answers for you but just know that there are others who suffer like you. Can you refer me to the group that talks about the side effects? You are the first person I have come across who has as many side effects as my daughter.
    Misfit Toy and SickOfSickness like this.
  5. Misfit Toy

    Misfit Toy Senior Member

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    @br64cats , can you tell me what brands has she been on? I was on Hizentra and Privigen. I think it's good to document this for others. Privigen I had some difficulties but Hizentra was like a nuclear bomb. My dermatologist who has seen me for years said that my sudden rash was definitely from IVIG. If it comes on right after ivig, why wouldn't it be the ivig??? It is doing something to the immune system...so, why not? Next up for me will be Gammaguard. I am scared. I don't like the sub-q. Many don't. And...many dislike the IV route. I will decide the further I progress. If you want, PM me her symptoms, because I would really like to know.

    I was diagnosed the other day with CVID. The immunologist doesn't even think I have CFS. I am not sure what to believe. I have had a sinus infection for 3 months now and my infections usually last months and I am on antibiotics wayyyy too much.

    The site you requested to find where people are sick from IVIG or sub-q or doing okay is called Daily Strength. I like it because so far, no one judges you if you are not doing well. As in, can't tolerate the meds. Many on there can't and they come out when you voice you are not doing well on something. And many people help you to tweak or know how to proceed.

    It's tough and we shall see what happens. If I am on this for months and feel horrible, I may not be able to tolerate it. It's tough enough being so ill and then to get worse...like way worse is too difficult for me.

    I am over the explanation that one needs to get sick before better. Bullshit. What other illness, aside from Cancer do you ever hear that for??
  6. br64cats

    br64cats

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    Misfit, she uses Gammagard, both for the IV and the sub Q. She gets bad headaches (sometimes migraines), severe exhaustion, itchiness, dizziness. I am part of dailystrength, also, but haven't seen posts from others with the bad side effects from IVIG but maybe because I am only looking under the CVID group. To complicate matters, she also has Lupus-like disease and Cutaneous Lupus so we just don't know what is from what at all. I will say this, though...she hasn't had as many sinus infections since she started the infusions, so it is helping in that regard. Sometimes I think she would be better off just taking a preventive antibiotic and stopping the infusions. The treatment trial and error is just too time consuming. I have been waiting years for my daughter to feel better and we were so hopeful that the Gammagard would help but unfortunately, after a year of treatments, she still isn't feeling any better.
    Misfit Toy likes this.
  7. Misfit Toy

    Misfit Toy Senior Member

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    @br64cats I can see that. I become severely exhausted and with Hizentra I had a horrible migraine.

    I am on CVID, too. People do post that they don't have good side effects. BUT, I also think people stay behind the scenes on that front because they don't want to upset the people who do well. When I posted my experience, I had several people email me directly and tell me their stories of how they couldn't take it or they were having such a hard time. I don't think they necessarily want to say out loud how horrible they are doing because so many are super okay on there. But...not everyone is the same so there have to be people who do bad, too.

    I am sorry your daughter has not had good luck with it. I feel for you. You are not alone.

    No one can really explain why people feel so bad on it. My immunologist says it's because it changes the amount of liquids there are in the body. I am not sure what that means. I know it dehydrates you, hence the need to drink so much water.
    Tito likes this.
  8. dsdmom

    dsdmom Senior Member

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    I, too, have been diagnosed wiht CVID and do Privigen. We are supposed to be switching to Hizentra soon as my dr. swears people do better on it, but I'm nervous about it! One thing that might have helped w/ the iv for you is if they slowed down the infusion. I could never do it in 3 hours. I do it in 6 or longer...and still I have side effects. Is the gammagard also sub-q? And has your dr. rechecked your igg levels to see if they are at least geting back into normal range? Also, if you do the iv again, what about getting fluids with it?I get 2 L of saline along w/ my privigen to help with headaches, etc.

    I, too, don't know if I am going to continue with it. Whenever I do it, I feel so horrible I think "never again!" and then by the next week I am ok...but to keep doing that every 3 weeks seems insane. And if Hizentra makes me feel bad every week, it's not worth it!!!
  9. Misfit Toy

    Misfit Toy Senior Member

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    @dsdmom , I have only had it twice. I am going to have it for 6 hours with GG. And saline. Are you feeling any better from it at all and how long have you done it?

    My levels have not been checked because I barely got off the ground. I feel like you. When I did the Hizentra...I seriously, no joke, was suicidal. My heart was nuts. I couldn't even breathe and keep up with it. I had to have an EKG. I developed head to toe itching. The immunologist was like..."no, that wouldnt' do it." WELL...that's stupid. It did it. I didn't have it before.

    I am doing IVIG..not sub-q. Many do way better on he sub-q. I do not like the needles. I felt so much worse on sub-q as opposed to the IV. Plus, I am not a wanting to have 3 needles in me. Gross. I looked like a pregnant woman after having it done. Plus, the needles hurt and went in deep. Whoever says it doesn't hurt...yes it does. It's not even the needles. It's the infusion. It's what runs through the needles and swells you up. But....many do better on it so it's an individual decision.

    I want more energy. I don't want as many infections, but my lack of energy is my reason for wanting it. I just feel too rundown. Like a balloon with no air.
    Last edited: Dec 7, 2013
  10. Ema

    Ema Senior Member

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    Midwest USA
    The Daily Strength board is a great resource as there are many more people there that have had treatment as opposed to here on PR. I certainly enjoyed reading through all the insightful comments.

    @dsdmom, Hizentra has worked quite well for me though I certainly don't think everyone will have the same experience as I have had. I'm 100% glad that I added it to my arsenal of treatment. Everyone is different though and SCIG/IVIG has a steep learning curve and a LOT of trial and error. It's not for the faint of heart or those who are unwilling to experiment for whatever reasons.

    Many people are now starting to infuse Hizentra daily SC and this can also be very beneficial in avoiding the peaks and troughs that cause such side effects in traditional IVIG. I have two friends that are doing it this way and like it very much as opposed to the weekly session. It's very quick and easy, like a B12 shot.

    Unfortunately people generally do feel crap when starting it up. They almost certainly will if their doctor doesn't know much about it or doesn't consider pre-existing levels of infection. It can feel like a terrible flu. Low cortisol can make this feel much worse and many of us with ME/CFS also have reduced endocrine function. It's a terrible catch 22.

    IVIG gives more energy as a side effect of having fewer infections. It's not like a shot of amphetamines or anything. Any doctor that says otherwise is giving false expectations. The body has to repair still and it is a long process.

    I personally had very few side effects after the first month or so. I attribute this to almost a year of antibiotics and antivirals before I started Hizentra so my infections were already coming under control.

    I started low and slow with the Hizentra and that also made a big difference. I think a loading dose is a mistake that can cause unnecessary suffering and I was glad that my doctor chose a different way for me.

    I also learned pretty quickly to put the needles in my flanks and thighs rather than my stomach. They do hurt and itch in the stomach more than anywhere else but most nurses seem to advise the belly. Probably just because it is easier for more people to reach. But the needles themselves are less than a quarter of an inch - like a pushpin sort of - and don't hurt me any more than a mosquito bite. It's way less invasive than an IV in my opinion.

    The difficulty plus the cost means that a lot of people won't get a chance to try it. If you do qualify though, I would certainly give it a shot because it is one of the only things we have that can build up the immune system. It has also been shown to be of benefit in autoimmune disease though it is not typically covered by insurance for this purpose. It might just be a nice side benefit if you also have an autoimmune disease!
  11. Rrrr

    Rrrr Senior Member

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    thank you so much for this thread. i'm so so so sorry you all have had such bad experiencing with gammaglobulin. my guess is that the key is that us hypersensitive patients (like me) have to start very "low and slow" (i.e. do very little of the med and slowly titrate up). i have started a thread to post about my treatment of gammaglobulin, which i begin next week, and i'll link to it here: http://forums.phoenixrising.me/index.php?threads/gammaglobulin.28338/
  12. Rrrr

    Rrrr Senior Member

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    also, can you update us on how you are doing? again, i'm so sorry this treatment messed you up. i really think the loooooow doses to start with are key!
  13. Misfit Toy

    Misfit Toy Senior Member

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    Hey, had 3rd infusion of Gammaguard today. I am okay on GG. Way better than Hizentra, proving that everyone is different. Haven't noticed any real change from it yet but was told it would take a bit. Glad you will start it, too!
    heapsreal likes this.
  14. Rrrr

    Rrrr Senior Member

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