Is there consens among specialists regarding IVIG in CFS-patients?

[Gingergrrl]

In an interview I watched with Dr Klimas she highlighted one particular study in the 80's did a great deal of harm because it was compared against an high dose IVIG study in CFS which showed it helped. The comparison study was at a much lower level of infused IVIG and did not help in the study.

That is interesting... so a study from the 80's showed that high-dose IVIG was helpful in ME/CFS but low dose was not? Is that correct?

I am on IVIG and it has helped me. Not a cure by a long stretch but helped. I did not take IVIG prior to getting tests done which leaned toward some type of autoimmune basis for my illness.

I am glad it has helped you and cannot remember, will you be doing Rituximab? I also can't remember which autoantibodies you test positive for (and am sure you have told me before)!

I would caution others to not get it without positive tests as well. That being said I would tell people with unexplained CFS to get every antibody test known to man because there is a lot we and doctors don't know yet....

I tend to agree with all of this.

 

[kms1990]

That is interesting... so a study from the 80's showed that high-dose IVIG was helpful in ME/CFS but low dose was not? Is that correct?



I am glad it has helped you and cannot remember, will you be doing Rituximab? I also can't remember which autoantibodies you test positive for (and am sure you have told me before)!



I tend to agree with all of this.

Yep that's right. The lower dose IVIG did not help patients in the study and Dr Klimas said the articles written about the studies compared to one another made it seem apples to apples. (back in the 80s much less was known by everyone about IVIG)

I may go onto RTX, however the two "studies" going on right now with Ron Davis and Nancy Klimas have really been eye opening for me. There is a component to my illness which is mito / hpa axis / metobolic. The treatment programs they are hoping to design target this area exactly. I might hold out continuing IVIG until some of there studies / research turn up results hopefully sometime in 2019.

 

[Gingergrrl]

Yep that's right. The lower dose IVIG did not help patients in the study and Dr Klimas said the articles written about the studies compared to one another made it seem apples to apples. (back in the 80s much less was known by everyone about IVIG)

That is really interesting and thanks for explaining. I am glad that Dr. Klimas (and it sounds like other doctors) are now really investigating the potential role of IVIG.

I may go onto RTX, however the two "studies" going on right now with Ron Davis and Nancy Klimas have really been eye opening for me. There is a component to my illness which is mito / hpa axis / metobolic. The treatment programs they are hoping to design target this area exactly. I might hold out continuing IVIG until some of there studies / research turn up results hopefully sometime in 2019.

I am behind on most of the research but it sounds exciting and I hope you find the right treatment very soon.

 

[madone]

word is that the Charite and Scheibenbogen published a new study regarding (high dose) IVIG recently. I could not find it right now, might be behind a paywall or just for doctors or something. Might be interesting if someone could find this study.


Here someone reported that the study was ongoing in December 17.
https://www.s4me.info/threads/intravenous-immunoglobulin-ivig.1156/#post-29178

 

[Markus83]

Might be interesting if someone could find this study.

The study isn't published yet. They used 0.8 g IVIG per kg body weight. The study was on patients with IgG deficiency, so it does not help the general CFS community much. I don't know if it was a blinded and placebo-controlled study. If not, the study is of little value.

 

[madone]

I have a deficiency (iGg and subclass) but no one wants to prescribe IVIG/SCIG, because i dont get many infections (in fact none since this all started). So for me this sounds really interesting, even more because i also live in Germany.

 

[Markus83]

Prof Scheibenbogen told me that the publication of the study will be at the earliest in 6 months. But the insurance won't cover IVIG anyway, I think.