Gammanorm, etc

Hello

Does anyone have any experience with intramusclularly administered gammaglobulin, for example gammanorm?

Also does anyone have any experience of getting a prescription from a doctor in the EU so it can be prescribed from an EU pharmacy? Albeit the UK is an EU member, doctors are specifically held back from considering plasma treatments for pwME here.

Many thanks

 

My question is more focused on the prescribing and dispensing logistics, I know the research picture is not definitive or clear.

 

Thank you. I should have been clear that it was being considered for hypovolemia, reduced blood volume. This is common in ME/CFS, at least as I understand it. It.makes sense to me, as aerobic activity expands blood volume and we don't get much of that (!).

From what I can see, the general gammaglobulin research for ME is patchy, with some interesting results and recent non-success also.

As soon as anyone knows you have ME, the UK guidelines will shoot down a medic who considers gammaglobulins, from what I know.

 

On a related note, the plasma focused research successes of late also make one think about gammaglobulin, but again, I'm thinking about blood volume medical conversations had.

Hence my logistical Q's

 

Gammaglobulin would be completely useless for low blood volume, which is not controlled by protein content. Even in terms of protein oncotic pressure the contribution would be trivial. I agree with Trish that this seems an inappropriate thing to be discussing on a forum the aims to take a scientific approach. In my view the last thing we want to be is a place where people swap pseudoscientific ideas about fringe treatments.

I also think the consensus about the evidence now is that blood volume is normal in ME.

 

I don't think this matches up entirely with all clinical experience regarding frequency of issues with plasma volume, as explained to me. I totally appreciate that the limited research base might not match and that clinical experience will also include interpolation (particularly with ME and may even be mistaken).

The gammaglobulin was not the only angle being considered. Fludricortisone is another, specifically regarding plasma production. I am merely reflecting what has been explained to me by a relevant secondary care specialist, someone very far from fringe. Hence my logistical focus.

I would add that most treatments, if not all, have a research basis with unsatisfactory statistical power. There is no adequate proof of much at all yet, sadly. This is why I defer to ME specific clinicians interpolating the evidence, thus triggering the Q.

 

@Jonathan Edwards Pseudo scientific exchange has no place, agreed. But I trust that you see from my reply that this is not the root of my message. Clinical conversation is the root.

 

I am afraid I do not see. I am not sure what clinical conversation means but it is very often based on pseudoscience. Clinicians who seem very respectable often talk bullshit much of the time. Any suggestion that immunoglobulin supplementation would affect plasma volume is bullshit - very typical of many of the sorts of 'ME specialist' I hear of. Sorry to be dismissive but there is so much nonsense talked about this illness by physicians. The hope of this forum is to cut through all that.

 

I appreciate your frankness and understand the reasons and history necessitating it. I am not a medical doctor, but am well aware of the risk of quackery in the field. Years before ME, I travelled to see Alan Hakim regarding my hypermobility (not a clinician I have seen for at least five years). I believe he is a protégé of yours, something I mention because I am broadly aware of and respect your standing in the field of ME and related fields.

Regarding gammaglobulin, I will say that the relatively recent hypovolemia discussion was fludricortisone focused. Speaking to my partner, whose presence was not cognitively impaired, I may be misremembering the reason why gammaglobulin was mentioned. It seems the mention was more in response my asking which treatments I have not yet tried that have some evidence, even if not yet robust evidence. I also framed my question with explicit comprehension that there are effectively no robustly proven treatments whatsoever. Balancing risks, their clinical experience and the opportunity cost of no enquiry leads one to such conversations. I asked due to the physician being far from the quack end of the high profile spectrum, and I have seen a few docs now. Their reference was very much in passing regarding research to be resumed, with the clear statement that they could not prescribe it as a UK physician.

Again, I emphasise that I am fully aware of the risks of my enquiry. And I am now more acutely aware of the public nature of this forum and concern as to readers who may take conversations or partial fact accounts out of context. You are very right to guard against that risk, albeit I would respectfully suggest just a little more tact when replying. Like myself, there are other scientists who we need in this field, who will have even less medical knowledge than this non-medical scientist. Machine learning engineers or computional statisticians are good examples of people we will increasingly need. Some of whom may, like me, fall ill and wonder how their day job could be reorientated to tackling this illness. They will need you.

Please don't allow my observation to distract from my genuine thanks for your invaluable role here.

 

The last doctor I knew of in the UK was Dr Spurr. There are still some old patients of his around and using IM IG but I'm not sure where they are getting it from now. Hopefully one of them will see this thread and tell us.

https://me-pedia.org/wiki/Irving_Spurr