Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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IVIG Who has Benefited

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Justin30, Apr 20, 2016.

  1. Justin30

    Justin30 Senior Member

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    Hello Everyone,

    Lots of talk about IVIG.

    Can whoever is out their share your positive response with either SCIG or IVIG?

    Thanks
     
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  2. justy

    justy Donate Advocate Demonstrate

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    I have been giving Sub Q low dose a go for a while - at first I thought it was helping, went from mainly bedbound to mainly pottering and sofa. But this seems to be no longer the case. I had an MCAS reaction to one batch, stopped to have a break for a few weeks and then felt better off it! Now ive been off it for three weeks I feel back to square one- no better, no worse.

    I had a herx from hell when I tired to up my dose, so my Dr thought we should be very careful. I presumed that a lower dose might still be getting to work on the infections, and be giving me some protection against getting sick from others.

    I think, unless I can take a higher dose, and not have nay more reactions, and not herx I might be able to get somewhere with it - but that's a lot of things to fall into place!

    I think I might give it another go....starting low and working up still, im convinced after the herx, that even if I don't feel better it must be running around trying to cleqar up infections for me?
     
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  3. pogoman

    pogoman Senior Member

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    I've been on IVIG treatment for an autoimmune myopathy for the past 5 months.
    Slow improvement after each treatment, it really got better after ramping up on B2 riboflavin.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @pogoman Can you say a little more about this? If you don't mind, it would be really helpful! When you say "autoimmune myopathy" what exactly does that mean? Did you have auto-antibodies to something specific on a blood test?

    Also, which brand of IVIG did you use, did you have any negative side effects, and what improvements do you notice? Also, how frequently are the IV's over the course of the five months? Are they once a week or a different interval? Lastly, how does B2 relate to IVIG? Is it something recommended for autoimmune issues?

    I apologize, I know that was a lot of questions!!! Please take your time to respond.
     
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  5. ukxmrv

    ukxmrv Senior Member

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    Hi Justin, I had a few IVIG and didn't notice any improvement in my ME or POTS symptoms.

    Sorry to be vague - it was a few years ago now.
     
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  6. pogoman

    pogoman Senior Member

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    @Gingergrrl
    The disease I am being treated for is this one, necrotizing autoimmune myopathy.
    http://www.ncbi.nlm.nih.gov/pubmed/21885975

    I tested negative for the two antibodies tests developed so far but half the cases reported test negative.
    This disease is so new that the antibody tests only came out the past year or so.

    Basically this is an autoimmune disease but does not show the inflammation usually seen.
    I have high blood CPK numbers, muscle biopsy showed necrosis and atrophy but I do not have inflammation of the body.

    I am currently taking 35g of Grifols Flebogamma 5% per day for 3 days, every 4 weeks.
    The first 3 months it was for 5 days but my neuro lowered it to 3.

    Improvement was slow but steady, I thought I could stop supplements but I have found that the muscle/mitochondria supplements have helped the rate of improvement.
    I take B2, coq10 and L-carnitine along with the methylation supplements B12 and folate.

    B2 is used as treatment for several mito/genetic diseases that are listed as "riboflavin responsive",
    It has helped tremendously since I ramped up to high dosing of B2, I assume I have something causitive similar to those diseases.
     
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  7. Theresa13

    Theresa13

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    I did ivig one time. I had to pay out of pocket because my insurance denied my claim. So i could only do 20 grams (my doctor originally prescribed 30 grams) the good news is it helped! I was shocked that it was so quick, the next day I felt more energy. Some days I couldn't move but the days that I could were better then they have been since this chronic fatigue took over. It only lasted a good 2 weeks and lingered for the rest of the month. so my doctor has been fighting my insurance company to approve every 2 wks ..we believe with continued treatment i could feel some real improvement. If you have the opportunity to try it, you absolutely should.
     
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  8. Vineyard1

    Vineyard1

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    I have had IVIG every 3 weeks since October 30, 2015 and notice minimal benefits thus far...the immunologist wants to continue for a full year before throwing in the towel. I have had conistently low Total IgG and low IgG subclass 1 as well as low NK cell activity with unremitting infections. My insurance pays a portion but I still have to pay thousands out of pocket for which my husband works two jobs to support all the expenses that accumulate with ME/ CFS.
     
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  9. charles shepherd

    charles shepherd Senior Member

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    Brief referenced summary of clinical trials involving IVIg - from the MEA Purple Booklet (2016 edition):

    · Intravenous injections of pooled human immunoglobulin (IVIg) have been assessed in five RCTs. Three reported benefits (DuBois 1986 – for ‘chronic mononucleosis syndrome’; Lloyd et al 1990; Rowe KS 1997) whereas two found no benefit (Peterson et al 1990; Vollmer-Conna et al 1997). There is no published evidence to support the use of intramuscular injection of human immunoglobulin or low-dose IVIg in research-defined CFS. Immunoglobulin has also been reported to be of benefit in parvovirus-induced ME/CFS (Kerr et al 2003).
     
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  10. Justin30

    Justin30 Senior Member

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    Dr. Michael Rosenbaum, authors of Solving the Puzzle of Chronic Fatigue Syndrome, state that, although CFS/ ME requires an integrative approach, if they had to choose the single most effective treatment, it would be gamma globulin.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @charles shepherd

    What are your thoughts on IVIG for someone who is in the auto-immune subgroup or who may not have clear-cut ME/CFS vs. 4-5 different auto-antibodies? In another thread you had said that you had been a "guinea pig" in the early days of treatment with plasmapheresis and other immune modulators (sorry if I am misquoting you, this is from memory and I had still hoped you might respond further in that thread!)

    Do you have an opinion re: IVIG vs. PP in patients who are autoimmune to reduce auto-antibodies? (In someone with proven auto-antibodies on blood tests.)
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @pogoman Thank you for sharing that info and I had not heard of this disease before. Did it take a long time for the doctors to figure out what was wrong and identify it for you?

    I think the calcium channel antibodies that I have was only discovered in 2006 or 2007 if I am remembering correctly so a lot of the science on this stuff is brand new.

    When I googled your illness, it said that it can be caused by statins and was curious if you took a statin prior to becoming ill (at any point.) I have never taken a statin but was injured by Levaquin and am certain it plays a role in the genesis of my illness even though there is nothing I can do about it now.

    I have never heard of Grifols Flebogamma and can't believe how many different brands there are. Am pretty sure I will be trying Gamunex if this is approved for me b/c my allergic risk. So you did it 5x/week and then reduced to 3x/week or is that not what you meant? Is that an unusually high amount?
     
  13. Justin30

    Justin30 Senior Member

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    Petterson uses Gummunex.
     
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  14. pogoman

    pogoman Senior Member

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    @Gingergrrl

    It took about 3 years of seeing different specialists before I was diagnosed.
    I had to push the doctors and request second opinions a couple of times, my second endocrinologist believed I had some sort of genetic disease but that was outside of her specialty.

    I tried two different statins in 2012 and had increased muscle pain within days.
    I was on different fibrates for about 7 years before that but had quit due to pain, fibrates is also listed as a trigger.
    I have had high triglycerides since at least 1998 and also anemia, I believe its a by product of this myopathy.

    I have Kaiser so I get whatever they use for IVIG.
    At first the treatment was 5 days in a row each month (every 4 weeks), now its 3 days in a row.
    I think the doctor wanted to start at a high dosage to build up the antibodies then taper down.
    The past 5 months I have noticed I see the same people having IVIG treatment the same time as me, so I think the 4 week interval is fairly common.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    That is interesting and I wonder if it is b/c he has found less allergic reactions with this brand or another reason? Do you have a link on this @Justin30 so I can read more about it? No worries if you don't!
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Yep, this is basically where I am except I just passed the three year mark which was mid January. However, it is only since about Sept/Oct 2014 that I reached this level of severity.

    This is also my experience and I have gotten many second and third opinions to try to clarify what is going on. I differ in that I don't believe I have a genetic disease but I definitely agree that genetics play a role as to why certain things happened to me that may not have happened to others who were exposed to my same triggers.

    I figured from what I read that your condition might have been triggered by Statins but was hoping that was not the case. I don't think people (doctors especially) realize how toxic the Statins and the FQ antibiotics can be.

    I had not heard of fibrates before and just Googled them. Are they known to cause similar issues as Statins?

    I have never had Kaiser for this very reason b/c I often require a specific brand of a med in order to avoid allergic reactions and can't be in a position where this is not permitted b/c too risky for me.

    Thank you for this info and I have no idea yet what will be offered to me. I know for auto-antibodies they prefer to start high with a loading dose but I already know my body will not tolerate this so if I go the IVIG route, I will be starting very low and slow to make sure I am not allergic before going any higher.
     
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  17. Justin30

    Justin30 Senior Member

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    Less preservative exactly....
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and that is what my MCAS doctor said that Gamunex has either less (or different?) preservatives that people with MCAS are less reactive to.
     
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  19. pogoman

    pogoman Senior Member

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    Fibrates are the first line of drug treatment for high triglycerides, sometimes you have both high trigs and high cholesterol and they treat with both fibrate and statin meds together.
    This combo has been known for awhile to cause muscle destruction in a percentage of people but I've never taken them together.

    So not being able to tolerate fibrates my doctor decided to try me on statins to see if it would lower my lipid numbers and that didn't work out as I mentioned.

    But my symptoms were occuring long before all this happened but it was tolerable, in 2011 I was required to work a lot of overtime at my job and the pain and fatigue got worse.
    By 2012 I was pushing my primary doctor to do something.

    I work as a diesel truck mechanic and there is heavy physical work involved.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @pogoman, Thanks for the additional details and I have just a few more questions! I know you said your illness is auto-immune but there is not yet an antibody test for it. How do they measure improvement or is it purely subjective by what you notice/report? Also, did Kaiser fight you on the IVIG or was it easy to get approved?

    Although mine has an antibody, the correlation is not direct, meaning someone could have a low titer and horrific symptoms (like me) or a high titer and zero symptoms. So, for me, if I do IVIG or plasmapheresis, or quite honestly maybe even RTX (or some combo) and it improves my breathing and lung strength and muscle strength, it will be crystal clear and the auto-antibody titers will be irrelevant.

    All of this is still hypothetical but hoping after my testing on Tues to have more of a plan (and absolutely no idea what insurance will cover.)
     
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