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

Markus83

Senior Member
Messages
277
I'm currently fighting for IVIG against my insurance. The law in Germany says, that for Offlabel-Use of medications there must be scientific studies, because of which there is consens among experts that the medication might work. I found two studies which showed IVIG working, and two or three others which showed the opposite.

The problem is that I have to proof that there is consens among CFS-experts that IVIG might work. Do you know if such consens exists (I guess, no)? Or do you know at least experts for CFS who find IVIG useful (preferably from the academic spectrum like university hospitals)?

I have no IgG-class deficiency.
 

Hip

Senior Member
Messages
17,824
I don't know if this might help:

Dr Chia finds 20% or so of his ME/CFS patients respond to IVIG. Ref: 1

Chia says for ME/CFS patients with severe pain, the pain will go away within 24 hours of an IVIG infusion. Ref: this video at timecode 3:33.

Dr Chia says low-dose IVIG is often more effective than high-dose. He says high-dose IVIG can make some people worse. Ref: 1

A study found ME/CFS patients with low CD4 counts before treatment are more likely to do well on IVIG. Ref: 1 2

More info:
IVIG - MEpedia
IVIG and ME/CFS
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
About 70% of IVIG in the US is prescribed for autoimmunity, not immunodeficiency. No.one hets it for ME/CFS, it's usually because of a different co-existing diagnosis.

Also, have immunoglobulins rechecked if tbey were at the lower end of normal. My total IgG dropped by.300 over 18 months, and my subclasses 1 and 3 dropped below range as well, qualifying me as immunodeficient enough to get IVIG.
 
Messages
33
I'm currently fighting for IVIG against my insurance. The law in Germany says, that for Offlabel-Use of medications there must be scientific studies, because of which there is consens among experts that the medication might work. I found two studies which showed IVIG working, and two or three others which showed the opposite.

Hello Markus, at the moment it seems to be possible in Germany to receive IVIG and to get it payed by Krankenkasse if You suffer also from autoimmun POTS and Small Fiber Neuropathy.
 

Gingergrrl

Senior Member
Messages
16,171
Hello Markus, at the moment it seems to be possible in Germany to receive IVIG and to get it payed by Krankenkasse if You suffer also from autoimmun POTS and Small Fiber Neuropathy.

@cyclamen I just Googled "Krankenkasse" and it translated as "health insurance". I was curious if that meant private insurance or something else?

Also, does that mean in Germany your insurance will cover IVIG for Autoimmune POTS? And if so, would Cell Trend testing alone be enough to diagnose and prescribe IVIG for Autoimmune POTS (in Germany)? I was very curious how this compares to the US.
 

Gingergrrl

Senior Member
Messages
16,171
You need to have a doctor diagnosing you with autoimmun POTS and SFN(!), because it is seen as equivalent to CFID.

Do you mean in Germany that Autoimmune POTS plus SFN equals CFS? Is this re: IVIG or in general?

Autoantibodies can be tested positiv by Celltrend or Labor E.R.D.E. from Dr.Bimmler. This is another laboratory testing internationally for theses antibodies.

I didn't realize that you have two labs in Germany that can test these autoantibodies internationally and am only familiar with Cell Trend. I need to re-test my Cell Trend labs to compare to 2016 (pre-treatment) results but have not had time to do this yet. Hopefully I will very soon.
 
Messages
33
Do you mean in Germany that Autoimmune POTS plus SFN equals CFS? Is this re: IVIG or in general?

Oh Gingergrrl, I made a mistake in writing the Acronym. It is CIDP (I will edit it in my other Posting). Because of CFS you will not get IVIG. There was only one small study from Scheibenbogen

https://en.m.wikipedia.org/wiki/Chronic_inflammatory_demyelinating_polyneuropathy

I didn't realize that you have two labs in Germany that can test these autoantibodies internationally and am only familiar with Cell Trend. I need to re-test my Cell Trend labs to compare to 2016 (pre-treatment) results but have not had time to do this yet. Hopefully I will very soon.
Yes there are two commercial ones. E.R.D.E. tests only panelwise not single, but from the muscarinic only m2. It does not give numbers, only positive or negative, because the numbers in these tests say nothing about how many receptors are affected by the autoantibodies, they says nothing about the severness. But the testing is much cheaper.
 

Markus83

Senior Member
Messages
277
You won't get IVIG covered based just on lab results (like autoantibodies, etc.), even if you have low total IgG. There have to be immunodeficiency signs aswell or other narrowly defined clinical symptoms. There is information for which indications IVIG can be covered on a regular basis in Germany. These are listed in the leaflet which comes with the medication or even better described in the so called "fachinformation". CIDP, for example, is listed as an indication in the "fachinformation". This does not mean that IVIG are coverd in every autoimmune process or neuropathy, just in the case of CIDP. CFS and POTS are no indications. An exception would be if you can take part in a scientific study which is done, for example, by a university hospital.

If you want to use IVIG outside the regular indications, you have to fit the law speaking for "Offlabel Use". One option is that you have a severe disease that will lead to death in a short period of time and for which there is no alternative treatment available. CFS will not lead to death in a short time, so we cannot apply this for our situation.

Another possibility, which is stricter, demands that you have a severe disease, for which there is no other treament available or the available treatments have been used without success. This would apply to CFS. But in this case you need to fullfill two more conditions (which makes the rule in fact very strict): 1.) There is scientific evidence which shows the treatment is beneficial AND 2.) There is consens among experts that the medication is useful for the given situation. You need to fullfill both criteria, not just one.

Concerning 1.), there are two blinded placebo-controlled studies which show IVIG useful in CFS. There are others which show the opposite. In this case I would selectivly cite the two positive studies and not mention the studies which were negative. With some luck, I would qualify for rule 1.). The problem is, and that is why I started the thread, to argue for condition 2.), namely that there is consens among experts regarding IVIG in CFS. There are not many CFS experts, in Germany just the Charité university hospital, on an international basis some more. If I claim against my insurance company that there is consens among experts regarding IVIG in CFS, I would have to back this claim up with facts, at least mention some (internationally) experts. So far I haven't found clear statements from any of them.

This is how the law speaking is in Germany. Most likely it differs more or less in your country. That means that things that worked in another country may not work in Germany and vice versa.

It ends with this: Can I somehow prove or at least make it plausbile that there is consens among experts regarding IVIG in CFS? Otherwise I have no chance to get my IVIG covered in Germany.
 

Gingergrrl

Senior Member
Messages
16,171
Oh Gingergrrl, I made a mistake in writing the Acronym. It is CIDP (I will edit it in my other Posting). Because of CFS you will not get IVIG.

No worries and that makes more sense that you were talking about CIDP.

Yes there are two commercial ones. E.R.D.E. tests only panelwise not single, but from the muscarinic only m2. It does not give numbers, only positive or negative, because the numbers in these tests say nothing about how many receptors are affected by the autoantibodies, they says nothing about the severness. But the testing is much cheaper.

I had not heard of ERDE but it sounds like Cell Trend is much more thorough and offers more tests. I will be re-doing Cell Trend soon (to compare to my 2016 pre-treatment results) but had just been curious about the other lab since you mentioned it. Thank you for the info.
 

Gingergrrl

Senior Member
Messages
16,171
It ends with this: Can I somehow prove or at least make it plausbile that there is consens among experts regarding IVIG in CFS? Otherwise I have no chance to get my IVIG covered in Germany.

How many ME/CFS doctors would your insurance in Germany need to consider it a consensus? I know with certainty that Dr. Peterson, Dr. Kaufman, Dr. Chheda, Dr. Chia (in some situations), and I assume Dr. Scheibenbogen all use IVIG. I am not sure about the other doctors who specialize in working with ME/CFS patients.
 
Messages
33
I had not heard of ERDE but it sounds like Cell Trend is much more thorough and offers more tests. I will be re-doing Cell Trend soon (to compare to my 2016 pre-treatment results) but had just been curious about the other lab since you mentioned it. Thank you for the info.

You are right about that E.R.D.E. is testing less muscarinic aabs, m2 is the most important one. But You can’t say, that their test is less thorough. They could give numbers too, but decided against it because higher numbers, = more aabs in the blood, do not indicate a worse case of ME or POTS. They are receptor aabs, they are binding with the receptors, working as agonists or blocking them, they do not destroy cells.
I have some of the highest numbers tested by CellTrend, but fall in the „not so bad“ affected group.
And I agree with you, for comparison you should not swap laboratories.
 

Gingergrrl

Senior Member
Messages
16,171
But You can’t say, that their test is less thorough. They could give numbers too, but decided against it because higher numbers, = more aabs in the blood, do not indicate a worse case of ME or POTS. They are receptor aabs, they are binding with the receptors, working as agonists or blocking them, they do not destroy cells.

I apologize and "thorough" might not have been the best word choice! I thought you were saying that they did not test as many autoantibodies (Cell Trend does eleven different tests now including the angiotensin one), and also that they just give a positive or negative vs. the actual lab value (within a range)? I might be misunderstanding. For me, we want to compare my new test results with my 2016 tests, but I only did nine of them in 2016 b/c that was all they offered at the time so the two new ones will not have a comparison.

I was a high positive for 7/9 in 2016 (we ran the testing twice and got the same results both times) and we want to see if the numbers are lower now that my neuromuscular and breathing weakness and my Autoimmune POTS are in remission. It is very possible that the numbers will not correlate with my symptoms but if they do, it will be very interesting. We also re-ran the Mayo Panel (for autoimmune dysautonomia) at the end of Sept but the results are not back yet.

It's very possible the new Mayo results will not correlate with my symptom remission either but we want to see. We know that 2 yrs of IVIG in and of itself can affect the numbers but some of these autoantibodies are rare (and my last IVIG was mid-July) so we waited long enough that it should not have a major impact. I just need to find time to do the Cell Trend testing since it must be done at a specialty lab or w/home phlebotomist with the kit and cannot be done at a regular commercial lab.

Edit: This thread motivated me to get moving and I just left a voicemail for the home phlebotomist that my doctor recommended to do the Cell Trend kit. Thank you guys so much!
 

Gingergrrl

Senior Member
Messages
16,171
Do you have sources? (audio or written)?

I apologize that I do not have audio or written sources about this. I know that Dr. Peterson prescribes IVIG based on a recent post from Janet Dafoe re: IVIG being prescribed for Whitney. I know that Dr. Kaufman prescribes it frequently for ME/CFS because he is my doctor. My diagnosis ultimately turned out not to be ME/CFS (to the best of our knowledge without a biomarker) but he prescribed it for many of his (textbook) ME/CFS patients as does his colleague Dr. Chheda. I have also read about Dr. Chia prescribing it for ME/CFS patients who meet certain criteria (but I am not sure what those are in his case). I have journal sources re: Rituximab that we used in the battle with my insurance but in looking at them closely they are for Rituximab and not for IVIG. I wish I could be more helpful :(.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I am also a patient of Dr. Kaufman's getting IVIG - I do have ME/CFS and auroimmune POTS with some of the CellTrend antibodies. His colleague, Dr. Chedda also prescribes IVIG, and i saw the same post Gingergrrl referred to that Dr. Peterson was the prescriber for Whitney. I have also communicated with Dr. Levine's patients and it seems she prescribes IVIG also. And I have heard that Dr Chia does, too.
 
Messages
53
I don't think so. I see many different doctors. Some are pro IVIG some are not.

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. Non educated people in the 80's wrote that up in the journals and the ripple effect took off turning many people off to the idea. The two studies were not comparable in any terms..... the treatment was simply different.

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 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....