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How does IVIG work for both autoimmune and immune deficiencies?

Discussion in 'Immunological' started by Gingergrrl, Mar 8, 2016.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I was wondering if anyone could explain the process or concept of how IVIG works for both autoimmune conditions and immune deficiency conditions? This seems like a contradiction to me and I can't figure it out!

    I know people have used IVIG on PR for immune deficiencies, but has anyone used it to treat an autoimmune condition of any kind?

    Also, how much fluid is generally infused with IVIG? Is it comparable to one liter of saline (or a lot more or a lot less?) Can it be infused at a very slow speed if needed or is there one standard infusion rate? Is it usually done in a hospital in case of anaphylaxis?

    Thanks in advance for any info!
     
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  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    IVIG works for immunoglobulin deficiency simply as a top up.

    Nobody knows how it works for autoimmunity and it is not even clear that it does work. It does seem likely to work for immune thrombocytopenia, based on trials, but in the other conditions it has been used the evidence is shaky. The evidence for ME is suggestive but not conclusive.
     
  3. ukxmrv

    ukxmrv Senior Member

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    Hi Gingergrrl

    I've had IVIG administered both by a nurse at home and in a clinic supervised by a doctor.

    I didn't notice the measure of the saline sorry. From memory it looked like at least 1L+

    There might be a bodyweight calculation on the amount of IVIG and saline.

    The infusion time was very, very slow on one visit (clinic) but faster on the others (clinic and home).

    I was told by the treating doctor to take Benedryl before each infusion for potential side-effects.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    Are you familiar with it being used for AAG, n-type channel calcium antibodies, or paraneoplastic syndromes? Would this be a less dangerous thing to start with vs. an immunosuppressant (such as the ones I posted last week- Imuran or CellCept or others?) Am not certain if I have ME/CFS but am certain that I have autonomic and autoimmune issues plus this specific antibody. Will not be doing anything until two more consults including pulmonary but trying to learn as much as I can in preparation.

    It sounds like IVIG is used for autoimmune conditions even though no one really knows why?!!
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    @ukxmrv Thank you and in your case, what specifically were you trying to treat with the IVIG and did you feel that it helped? Do they always give one liter of saline in addition to the IVIG or are the two mixed together? I guess a bodyweight calculation would make sense but I know for me, it would need to be a super slow infusion rate to avoid pulmonary edema. I cannot imagine doing it outside of a hospital with my history. I read that people take Tylenol and Benadryl before hand. Do you know why Tylenol? If someone doesn't tolerate Benadryl well, could they take a different antihistamine like Atarax beforehand instead? Is it IV Benadryl or pill form?

    No worries if you do not know the answers!
     
  6. ukxmrv

    ukxmrv Senior Member

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    I'll send you a PM @Gingergrrl

    It's too long ago to remember clearly. I don't think from memory that IVIG can be mixed with normal saline. This was done in 2 parts for me and was quite separate.

    It's going to be different for you as when I was treated it was experimental IVIG plus extra saline after after because I have POTS.

    I'm guessing that your doctor will only administer the IVIG part, then use a compatible saline to flush the line to get the last of the IVIG out and not administer extra saline.

    The amount of IVIG you get may be based on your body-weight and there will be a calculation. I'm large.

    The brand of IVIG varied in size as well I remember. One bag seemed a lot bigger than the others and this may have been the very slow one

    My doctor didn't use Tylenol (which I think we call Paracetamol in the UK). He was an American doctor and used the American form of Benedryl in pill form.
     
    Last edited: Mar 8, 2016
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and that would be great!

    I actually have confirmed POTS too yet if I do get IVIG (which is a HUGE "if") it would be for a different reason and not for POTS.

    That could very well be. I should know by the end of March what is being proposed for me. Right now am trying to learn as much as I can in advance.
     
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  8. ukxmrv

    ukxmrv Senior Member

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  9. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for the link and I just glanced at it (and suspect the brand names are totally different in the U.S.) but the rest is very helpful and relevant. It mentions cases of anaphylaxis which is my #1 concern and also said it can make your blood thicker and risk for clots which is another potential concern for me. Overall, am not even sure if this will be proposed or if it is the right treatment for me but one of my doctors mentioned it and I wanted to start gathering info.
     
  10. helen1

    helen1 Senior Member

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    @Gingergrrl
    You can slow the rate of infusion. I asked for a very slow rate in my first few but last time I was in a hurry so I asked them to speed it up and that was fine.

    Also I had an apparent allergic reaction to one batch (they are all slightly different batches) which stopped immediately when they gave me IV Benadryl. Then saline.

    Now they always give me saline before the IVIG not sure why but I like it.
     
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  11. boohealth

    boohealth Senior Member

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    1) If your immune system is generating self-antibodies because of molecular mimicry--in other words, a peptide sequence in your own tissue is too similar to a peptide sequence of a pathogen you harbor, so when attacking the pathogen which may be at low chronic levels, you attack yourself too, then the antibodies in IVIG may temporarily knock off that pathogen (which your own body may actually be afraid to completely attack because it senses it will also be attacking itself) and your self antibodies may temporariyl go down.
    2) There is a polysaccharide--a long chain sugar--that scientists think may be responsible for calming the immune system. I read this years ago and took note but sorry I can't find the study now.

     
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  12. Sushi

    Sushi Senior Member Albuquerque

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    Quite a few people on this forum also get IVIG subcutaneously--which would be a very small amount and then, of course, the IV part is not accurate.
     
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  13. pogoman

    pogoman Senior Member

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    I've been having monthly IVIG treatment at my HMO's hospital since December, I have a necrotizing autoimmune myopathy.
    I can't tell you the scientific reasons why it works but its a common treatment for autoimmune diseases in the US at least.

    I saw my neuro Friday and due to the improvements from IVIG, he is continuing it but three days instead of five.
    We talked about other treatments but he thinks IVIG is the safest for now.

    Everybody is infused at their own rate, for your first treatments they will go conservative and slowly ramp up the rate to whatever the IVIG manufacturer's maximum rate is.
    As I tolerate IVIG fairly well, I am started out at 100 and ramp up to the maximum 300 within 30 minutes (mgs per hour??).

    If you are going to have IVIG regularly, write down and keep what your safe rates are so the nurses at each treatment are aware of them.

    Electronic rate pumps are used and saline may or may not be pumped at the same time.
    For me, saline is only used at the start and ending to flush the IV lines.
    if one has side effects, they will reduce the infusion and/or infuse saline at the same time

    Some have to take pre-meds if they get hives or itching, its all how the individual reacts.

    The other most common side effect is headaches and keeping hydrated before and after is recommended.
    I drink a lot of water during treatment days and it seems to help.
    I might have some head pressure the first day but it goes away.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @helen1 What happened when you had the allergic reaction? Was it hives or a skin reaction or more serious like throat closing/anaphylaxis? It sounds like someone can react to different batches even of the same brand? I use nebulized glutathione and have had 4-5 batches at this point but there was one batch that I reacted very badly to and had to exchange so maybe it is the same concept? Do you know if they can use Atarax or alternate antihistamine if someone does not tolerate Benadryl?

    @boohealth Thanks and that sort of makes sense to my non-sciency brain. I have the hashimoto's antibodies but that is not why I am considering this. It is b/c of a recently discovered antibody that attacks the n-type calcium channel. The doc who found it appears to recommend immunosuppressants but my other doc thinks IVIG is better so I am trying to gather as much info as I can to make an informed choice. Nothing will be decided before the end of March.

    @Sushi thanks and I forgot about the sub-Q kind. This would definitely eliminate any bad reactions to the amount of saline/IV fluid. I'd need to find out how this compares from an allergic and blood clot perspective. Is this kind as effective (since I assume it is a much smaller amount given?)

    @pogoman Am sorry to hear this and thank you for all the info you provided. Is the IVIG helping in your opinion?
     
  15. helen1

    helen1 Senior Member

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    @Gingergrrl
    I'm sorry to say it was a breathing reaction. It hurt to breathe, burning chest sensation, not throat closing though. Cleared up right away with the antihist. I would assume they'd have more than just benadryl on hand at a hospital if you don't tolerate the benadryl.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Sorry to hear that happened but it sounds like the Benadryl turned it around quickly. I can tolerate an isolated dose of Benadryl in an emergency but more than that, I develop a toxicity reaction, and Atarax is my normal rescue med.

    I really appreciate all the info on IVIG and learning that no one actually understands the mechanism in autoimmune diseases makes me feel better (that it was not just me!)
     
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  17. kangaSue

    kangaSue Senior Member

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    @Gingergrrl, I have read several accounts of IVIG where the infusion rates have varied from 3 hours to 8 hours.

    While having an adrenal function test the other day, the guy in the chair beside me had 200ml of IVIG infused over 2 hours without any side effects. I don't know if that was all he had as I left before the empty bottle was taken down or changed.

    How much do others normally get infused at a time?
     
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  18. valentinelynx

    valentinelynx Senior Member

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    I'm getting SCIG in the form of HyQvia, which allows you to get a larger amount in one go than the previous versions of SCIG. With HyQvia, you can have the infusions every 3-4 weeks (in one two sites) like with IVIG rather than having to do weekly infusions in multiple sites as with other versions of SCIG.

    HyQvia works by including an enzyme (hyaluronidase) that temporarily breaks down the hyaluronan in the subcutaneous tissue, allowing you to infuse more liquid at one time. I get 300 ml's (30g) every 3 weeks. Some people get more.

    There are fewer severe reactions reported with HyQvia and other SCIG's than with IVIG. That being said, I was getting high fevers and severe myalgias with my infusions. The last time my doctor ordered stress dose hydrocortisone prior to the infusion and that seemed to prevent the febrile reaction.

    In general the peak concentration of IgG in the blood after infusion is much higher after IVIG than after SCIG. Therefore, the risk of blood clots and immune reactions may be less with subcutaneous administration.

    Hope that is somewhat helpful.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @valentinelynx Can I ask what you are receiving the HyQvia for and if you feel it has been helpful? When you say "one two sites like with IVIG" do you mean there are two separate injection sites or an IV in each arm simultaneously?

    I have never heard of this and will add it to my list to Google.

    Do you do the HyQvia at home or at a hospital infusion center? I already take Cortef and could probably take more prior to the infusion/shot if recommended by doctor. I have not had a fever in over three years and would almost feel like my immune system was doing something if this happened to me.

    It definitely sounds like a safer way to go and my body responds to micro doses of meds so I will keep this in mind.

    Yes, very much so! Still have no idea if this is the route my docs will go but it is sounding better than the hardcore immunosuppressive meds right now.
     
  20. pogoman

    pogoman Senior Member

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    YW, yes it has been helping.
    not a dramatic improvement like prednisone but a steady decrease in pain and fatigue after each round of treatment.
     
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