subcutaneous immunoglobulin UK

[Treeman]

Hi, does anyone get subcutaneous immunoglobulin injections in the UK privately?

If so where from, a Dr? Or, do you buy it yourself? Thanks

 

[godlovesatrier]

Want to follow this. But I believed they were IV only. If you have more info let us know. My igm is low and my subclasses could well be for igg too.

 

[godlovesatrier]

Done some more research into this.

Can be purchased from the usual places.

Ivig isn't necessarily superior. If you have an autoimmune condition then scig unlikely to have any effect.

Study quality is poor. 5 studies done. Only one of them is any good. That study showed immunglobukij therapy worked well for the majority of severe ME patients. About 50% returning many to normal life. However in some patients it had zero effect.

Seemed to work really well for POTS and conditions like that. But higher doses required which means insurance only. Or in the UK 15k per round at breakspear.

Potential reactions include anaphalyxis and allergies for the ME body special repsonse to almost all things!! Could make MCAS worse initially or long term.

Anecdotally on twitter can't find anyone who's taken it but prior to 1988 it seems ivig was used a lot in America according to a few tweets and that it was pulled when pysch came along.

Haven't got much more info as yet. But the meta analysis said severe pwme with severe post exertional malaise symptoms and low igg total would it seej have a very high likelyhood of benefitting from this treatment.

One anecdotal tweet on twitter says immunoglobulin therapy would work better for entereoviral infections. But I don't see how that can be the case.

https://twitter.com/i/web/status/982330885251915776

 

[Treeman]

Only one of them is any good. That study showed immunglobukij therapy worked well for the majority of severe ME patients. About 50% returning many to normal life. However in some patients it had zero effect.

Do you have a link? Thanks

 

[godlovesatrier]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8623195/

 

[godlovesatrier]

Got some extra info:

Dr. Jay Goldstein who was an experienced CFIDS (myalgic encephalomyelitis) discussed using IV Gamma Globulin in a 1991 CFIDS Chronicle article.



"Some comments from the article:

"Judicious use of Gamma Globulin... I prescribe 5 to 10 grams every 1 to 2 weeks. It is much harder to get insurance approval for intramuscular gamma globulin since the NIH published a consensus report on which diseases merited intravenous gamma globulin therapy and CFIDS was not among them....

I have found that it makes little difference in patient response where there is a subclass deficiency or an absence of antibody production after standard antigen challenge unless there are characteristic symptoms related to these disorders.... If I use Igg, I want to have the produce with the lowest amount of IgA... Those patients who feel immediately energized after their first gamma globulin injection will have the most rapid decrement of effect...

I still use intramuscular gamma globulin at a dose of .13mg/Kg per week, starting with lower doses in case there are adverse reactions."