Medications for Immune Deficiency: Intravenous immunoglobulin, Inosine pranobex, Hydroxychloroquine

Also curious what people's experiences have been with these treatments. Clearly, one would have to work closely with an immunologist to determine and receive the appropriate treatment. But I'm really curious. I get sick All. The. Time. I know that recurrent viral infections wipe me out and have caused several relapses and possibly even lowered my personal "baseline." I've wondered about immune system issues, but haven't seen much about specific treatments.

I found these on the Bateman Horne Center website.

https://batemanhornecenter.org/education/me-cfs/

Medications for Immune Deficiency:

Intravenous immunoglobulin
Inosine pranobex
Hydroxychloroquine

 

Hi @MountainRose

We do not have any reliable evidence for a link between ME and immunodeficiency. In the past there was a vogue for calling it an immunodeficiency syndrome like AIDS but there was never a good basis for that and the claimed test findings have not been repeatable.

IV immunoglobulin is mostly used in immune disorders not for immunodeficiency but because it seems to help, for reasons we do not understand. Most of the evidence is unclear anyway, except perhaps for immune thrombocytopenia.

I don't know much about inosine pranobex but I don't think it is a treatment for immunodeficiency as such.

Chloroquine is not a treatment for immunodeficiency. It reduces inflammation rather weakly in conditions such as lupus, again for no well understood reason.

Where does Bateman Horne actually mention these? You give a URL for their general ME page and I didn't see it.

 

@Jonathan Edwards - thank you for your thorough response.

The treatment ideas are under the heading "ME/CFS Treatment Recommendations." I've attached it.

Too bad these particular ones don't seem advisable. As usual, I was hopeful to find something that could help.

 

Thanks, I found it now on the site.

Bateman Horne shouldn't be putting out a great list of unproven things like that - many of which have significant harmful effects.

Again, I think we need a level playing field. If we are to convince people that CBT and GET are worse than useless we need to admit that these sorts of things may also be worse than useless.

 

Immunoglobulin can be prescribed to people with common variable immune deficiency (CVID), which is diagnosed by specific biomarkers. This can include the patient's immune response to a vaccine. US patients can't get this expensive treatment covered without meeting these tests

Some people with ME have been diagnosed with CVID using these biomarkers and have then been treated with either IVIG or the subcutaneous version.

And some of those have been helped - not cured but improvements in symptoms. For instance, in one case I know of, the improvement in cognitive functioning allowed the person to resume work they had been doing.

 

And some patients have been made worse from these treatments re Inosine pranobex (Imunovir) based on test results and a small CFS study. I'm one of them.

 

But surely we should be very careful to deduce anything from that and it is no way a good reason for Bateman Horne to mention IVIg on a site about ME.

If people with CVID benefit from IVIg, which is likely they do by general improvement in health from reduced infection problems, then if those people also have ME they may well be able to function better. That does not mean that IVIg has anything at all to do with ME per se. People with emphysema or multiple sclerosis who also have CVID probably manage better after IVIg - very likely they do.

Surely this is just an example of the general rule that if you have ME you and your health professionals should not forget to make sure any other conditions are properly managed because PWME are likely to have worse ME symptoms if dragged down by another health problem.

 

Don't know if there's a collective "we" and if the Bateman Horne center would fall under that. Imo there is good practice and bad practice. Prescribing things without good evidence would fall into the latter, whether it be by psychologists or clinicians. It's possible or probable even that the Bateman Horne clinic runs tests before prescribing something, but if they are they should say so plainly on their website. We can recommend this or that treatment if this test turns out positive/negative.

Skimming quickly through the text they do make caveats:

 

I took Hydroxychloroquine for about three months. It didn’t help my primary ME symptoms but it seemed to prevent headaches. I had no headaches the entire three months, but when I stopped the drug, I had three months worth of excruciating headaches in about two weeks.

 

"Depending on a patient’s presentation and testing, the treatment recommendations below are those used by ME/CFS clinical experts to treat various aspects of ME/CFS"

Let's face it, they are telling people that 'experts' use this stuff for ME. This is precisely the sort of eminence-based medicine that ME needs to grow out of. Rheumatoid arthritis grew out of it in around 1985. Admittedly there were some things shown to work, but they were arguably more trouble than they were worth until 1995.

 

I have tried IVIG and Imunovir. Neither had any long term benefits that I could see.

The Imunovir did seem to have a good effect on my swollen glands and sore thoats for a while but then seemed to wear off. I had forgotten about this. The IVIG did nothing obvious that I could see.

IGIM was used by at least one of the old ME doctors in the UK until he retired.

 

Thank you all and especially @Jonathan Edwards for your thoughtful replies.

Sometimes when my symptoms are worse I get desperate and start trawling the internet for anything I might not have tried already. I should know better - any evidence-based treatments will likely be in trials for some time before they are clinically available. So anything that would work will probably be something we see a long time coming...

There aren't likely to be any surprise treatments out there. *Sigh*

So I guess I'm back to pacing, symptom management, and waiting and hoping.

 

I also have a new doctor who recommended that I get more exercise and drink caffeine in the afternoon when I get tired. I explained to her about pacing, which she assured me she understood, then said she recommends more exercise anyway. So, I think I need to find a different new doctor.