Plasmapheresis study at Berlin (Charite Prof Scheibenbogen)

[Gingergrrl]

As I remember, Vanderbilt does some of this testing.

I thought they did the testing for MG, myesthenic syndromes, LEMS, etc, but the specific antibody tests from Germany were purely in the research stage? Do you happen to know @Freddy if these tests are done outside of this research study? In the earlier thread that Freddy linked, I thought it was mentioned that they were only research tests at present (but I could be wrong!)

If Vanderbilt does the testing, can a local doctor order it and send the blood to Vandy (like it is sent to Mayo) or do you have to physically be at Vandy to have it done?

 

[anciendaze]

While the way filters are mentioned in the work indicates something different from pure plasma exchange, Freddy's description makes it clear he at least gets immunoglobulin G to restore some immune function. This is not simply restoring his own immunoglobulin.

The really interesting thing here is that this simple, direct expedient is making argument about psychosomatic problems irrelevant at present, while NIH is still gearing up to do a study that will take years to complete and longer to evaluate. This treatment may be too expensive to use on every ME/CFS patient, but it narrows the search for the cause of the problem considerably.

 

[Gingergrrl]

While the way filters are mentioned in the work indicates something different from pure plasma exchange, Freddy's description makes it clear he at least gets immunoglobulin G to restore some immune function. This is not simply restoring his own immunoglobulin.

It sounded like they were filtering his own plasma and returning it to his body and then doing some form of IVIG... versus plasma exchange. He seemed to be having PP 3-4 days in a row vs. the kind done in the US (plasma exchange) seems to be done only once a month.

The really interesting thing here is that this simple, direct expedient is making argument about psychosomatic problems irrelevant at present, while NIH is still gearing up to do a study that will take years to complete and longer to evaluate. This treatment may be too expensive to use on every ME/CFS patient, but it narrows the search for the cause of the problem considerably.

Agreed. We need these studies here but they are not happening.

 

[anciendaze]

...Agreed. We need these studies here but they are not happening.

It depends on the motivation of researchers. Some want to study the problem, while others want to solve it. You would be amazed at how long it is possible to study a problem without solving it.

 

[Sushi]

If Vanderbilt does the testing, can a local doctor order it and send the blood to Vandy (like it is sent to Mayo) or do you have to physically be at Vandy to have it done?

That I don't know.

 

[MeSci]

@MeSci : I've CFS now for 15 years. I am pretty susceptible to respiratory infections (4 times a year) and this is always a possible tricker for relapse.

That's interesting. Many of us don't get respiratory infections. If my memory serves me correct, respiratory infections decrease or disappear in many of us after about 3 years' illness - can't find the thread(s) at present.

 

[Kati]

That's interesting. Many of us don't get respiratory infections. If my memory serves me correct, respiratory infections decrease or disappear in many of us after about 3 years' illness - can't find the thread(s) at present.

There seems to be 2 different groups, one who have an immune system in overdrive, who will not catch any infection, and the other group who's immune system is depleted, who will catch everything that comes their ways.

 

[Gingergrrl]

There seems to be 2 different groups, one who have an immune system in overdrive, who will not catch any infection,

Agreed and I am in the hyper-drive group with no infection, fever, cold, flu-like symptom in over three years but multiple auto-antibodies, crazy allergic/MCAS reactions, positive IgM+ viral titers to all kinds of stuff- basic immune system in hyper-drive/chaos.

 

[Kati]

Agreed and I am in the hyper-drive group with no infection, fever, cold, flu-like symptom in over three years but multiple auto-antibodies, crazy allergic/MCAS reactions, positive IgM+ viral titers to all kinds of stuff- basic immune system in hyper-drive/chaos.

I haven't had a cold in over 7.5 years, the time I have been sick. Some say at some point in the course of the illness, all that changes. We'll see.

 

[Freddy]

It sounded like they were filtering his own plasma and returning it to his body and then doing some form of IVIG... versus plasma exchange. He seemed to be having PP 3-4 days in a row vs. the kind done in the US (plasma exchange) seems to be done only once a month.



Agreed. We need these studies here but they are not happening.

It was exactly as you suspected: they were filtering my own plasma and returning it to my body, finally IVIG.
No plasma exchange!

 

[Gingergrrl]

It was exactly as you suspected: they were filtering my own plasma and returning it to my body, finally IVIG. No plasma exchange!

Thanks @Freddy I wonder why the European version (what you had) is not done in the US? It is obviously possible to do it since it was done on your entire study and seems like a much safer procedure to do than what is done here (plasma exchange.) Thank you for the info and I wish I knew why the two systems were so different.

 

[CFS_for_19_years]

I've CFS now for 15 years. I am pretty susceptible to respiratory infections (4 times a year) and this is always a possible tricker for relapse.

Just so you know, I was susceptible to respiratory infections for at least the first 15 years, and the infections would last for months. Sometime between 15 and 20 years into my illness, respiratory infections became less frequent, and I got over them in 10 days or less.

The immune system changes as we get older, and allergies become less intense. Allergies do make you more susceptible to colds and chronic sinusitis. (Allergists told me all of this.) At 15 years into my illness, I was 51.

I don't know how I compare to others here, but I haven't had a cold in at least 5 years, and I was over it in less than 10 days. That's a stark contrast to how things were in the beginning.

 

[Gingergrrl]

@Jonathan Edwards or @Kati I was just curious if either of you know why the European and Asian versions of plasmapheresis involve filtering the antibodies out of the plasma and then returning the plasma to the body vs. the American version which is plasma exchange in which the plasma is removed and then replaced with donor plasma or some combo of albumin & saline?

Is it a financial reason or a medical reason or something else? Are there any places in the U.S. where a patient can do the European version to try to remove auto-antibodies? It seems much less dangerous than what is offered here. No doctor has prescribed this for me anyway, but am doing some research on my own. I have not found a doctor here yet who has ever done PP on a patient, it seems so uncommon here but pretty common in Europe/Asia.

@Kati, when you saw PP on the oncology units, was it the European version or American version? No worries if you do not remember or not comfortable to respond. Thanks in advance.

 

[Kati]

@Jonathan Edwards or @Kati I was just curious if either of you know why the European and Asian versions of plasmapheresis involve filtering the antibodies out of the plasma and then returning the plasma to the body vs. the American version which is plasma exchange in which the plasma is removed and then replaced with donor plasma or some combo of albumin & saline?

Is it a financial reason or a medical reason or something else? Are there any places in the U.S. where a patient can do the European version to try to remove auto-antibodies? It seems much less dangerous than what is offered here. No doctor has prescribed this for me anyway, but am doing some research on my own. I have not found a doctor here yet who has ever done PP on a patient, it seems so uncommon here but pretty common in Europe/Asia.

@Kati, when you saw PP on the oncology units, was it the European version or American version? No worries if you do not remember or not comfortable to respond. Thanks in advance.

Hi @Gingergrrl I did not see plasmapheresis per se since this is performed in a special unit, not at the same locals where i was working. However it is my understanding that what they did was imply a filter and return the patient's own plasma.

i suspect that the technique used would depend on the reason why it is done, and what technology is available. But this is only a thought. I can't really speak for that.

One more thought, that Dr Edwards has mentioned it before, is that auto-antibodies are terribly hard to get rid of. The fact that plasmapheresis is only temporary in ME patients as of what @Freddy is saying, makes a point in saying that the antibodies return. Then perhaps a plasma exchange would be preferred in the exampe of your own diseased plasma.

Germans are known to be forward thinking in their medical approaches. They perform heart (myocardium) biopsies when the americans don't. They find viruses in there.

 

[Gingergrrl]

Hi @Gingergrrl I did not see plasmapheresis per se since this is performed in a special unit, not at the same locals where i was working. However it is my understanding that what they did was imply a filter and return the patient's own plasma.

@Kati thank you for your quick response and I really appreciate it. I was not sure if you were ever involved with PP on the units where you worked or if you had seen it. It sounds like the practice as you describe in Canada is similar to the European and Asian versions vs. that in the US.

i suspect that the technique used would depend on the reason why it is done, and what technology is available. But this is only a thought. I can't really speak for that.

I am coming to a dead-end in finding anything but full plasma exchange in the US and my guess is that we would have the technology here to do either, so there must be some other reason.

One more thought, that Dr Edwards has mentioned it before, is that auto-antibodies are terribly hard to get rid of. The fact that plasmapheresis is only temporary in ME patients as of what @Freddy is saying, makes a point in saying that the antibodies return. Then perhaps a plasma exchange would be preferred in the exampe of diseases plasma.

I totally agree with this point and I know PP is a temporary answer and then the auto-antibodies return. It would need to be combined with IVIG or RTX or something else afterward. But if someone did PP and got an improvement, it would be very good information to have b/c it would mean that the temporary reduction is auto-antibodies was effective (even if temporary.)

I can see why plasma exchange may be preferred but from what I am reading, the antibodies still come back (maybe slower, I do not know?) but they still come back and some other technique is still needed. In some cases, I believe plasma exchange to be riskier if someone is prone to allergic reactions or anaphylaxis b/c you are receiving someone else's plasma (and a huge amount of it) plus albumin/saline so it is a high volume of exchange, plus all of the chemicals involved to clean it, blood thinners to avoid clotting, and anesthesia to install the port (although I believe this part is required in both versions.)

Germans are known to be forward thinking in their medical approaches. They performed heart (myocardium) biopsies when the americans don't. They find viruses in there.

Agreed and they seem much more open to even something like IVIG and less risk averse. I am now 100% of the belief that if an adult patient who has suffered for years and continues to deteriorate at an alarming rate AND who has proven auto-antibodies on blood tests, wants to try a treatment that carries some risks, they should be allowed to do so and am finding this is not the belief of most U.S. doctors. Of course there are exceptions to this rule but in general, this seems to be the case.

 

[Jonathan Edwards]

@Jonathan Edwards or @Kati I was just curious if either of you know why the European and Asian versions of plasmapheresis involve filtering the antibodies out of the plasma and then returning the plasma to the body vs. the American version which is plasma exchange in which the plasma is removed and then replaced with donor plasma or some combo of albumin & saline?

All plasmapheresis is the same - blood is removed via a line and all the plasma taken out and the cells returned in saline. Plasma is then replaced using donor plasma.

There is a system for filtering out just IgG using a staphylococcus protein A column - I think it goes under the trade name of Prosorba. It is unlikely to have any advantages and there are reports of severe anaemia after its use. Taking out whole plasma and replacing with whole plasma is much more sensible anyway since otherwise you have to spend huge amounts of money on purifying donor IgG to put back for no advantage. All the rest of the plasma proteins should be the same for patient and donor and if anything are likely to be more balanced in donors. The only real issue as far as I know is making sure that there is no contamination with viruses or prions and that is an issue for all blood products - which seems to be pretty much dealt with by modern screening methods.

 

[Gingergrrl]

All plasmapheresis is the same - blood is removed via a line and all the plasma taken out and the cells returned in saline. Plasma is then replaced using donor plasma.

So is this what occurred in the study at Charite that @Freddy was sharing b/c it sounds very different in which his own plasma was returned. Am just trying to get clarification as I am learning more about this process.

The only real issue as far as I know is making sure that there is no contamination with viruses or prions and that is an issue for all blood products - which seems to be pretty much dealt with by modern screening methods.

Yes, this is definitely a concern along with allergic risks to the donor plasma, chemicals used to clean it, potential blood clots, and being able to tolerate the amount of fluid/protein being transferred. Or at least that is my understanding of it which could be wrong!

 

[rosie26]

There seems to be 2 different groups, one who have an immune system in overdrive, who will not catch any infection, and the other group who's immune system is depleted, who will catch everything that comes their ways.

I'm pretty sure I have an immune system in overdrive but I still catch colds, usually I will get a whole bunch of colds in a two year space and then nothing for the next two years and then back to getting whatever is going around.

 

[Freddy]

All plasmapheresis is the same - blood is removed via a line and all the plasma taken out and the cells returned in saline. Plasma is then replaced using donor plasma.

My be the confusion comes from my being a layman...
The correct expression should be Immunoadsorption. It was a filter process and I got my own plasma reinfused. According to the information sheet I got from Fresenius its a "broad band" adsorber with the trade name "GLOBAFFIN" using a substance with the trade name "Peptid-GAM" which binds IgG (best affinity to subclass 1,2 and 4).
A reference for its application: http://www.karger.com/article/Abstract/90659

I wonder if I should change the title of this thread...

 

[Gingergrrl]

@Freddy, I saw an excellent rheumatologist today and we discussed several topics with one of them being plasmapheresis. He confirmed that there are indeed two different types or ways to do it (one with the person's own plasma being cleaned and returned to the body and the other with plasma exchange and donor plasma.)

Both can actually be done within the United States (which was unclear to me from my own research) but one appears to be more common in Europe and one more common in the US (am still not sure why.) He felt that in both types, the antibodies are removed quickly but they always return b/c they are not being destroyed at the production level like with RTX.

I don't think you need to re-name the thread (just my opinion) b/c if the study you were in called the procedure "plasmapheresis" then that is what you received, just not full plasma exchange which is what is more common in the U.S. Hope this helps vs. confuses things more!