Has anyone tried IVIG or PLEX

[crypt0cu1t]

Hey everyone! As many of you know, I tested positive for AChR Binding Antibodies and salivary protein 1 antibodies as well as an elevated ESR & CRP.

I have been reading a lot of stories about IVIG and Plasmapheresis and noticed it seems to greatly improve the condition of people with an autoimmune subset of ME/CFS. The storoes that particularly stand out to me are @Jesse2233 @Gingergrrl @Nickster and a couple others (hope you guys dont mind me tagging you)

My condition is rapidly deteriorating and I'm finding it increasingly harder to take care of myself due to my symptoms (Dizziness, weakness, SEVERE mental fatigue, head pressure, distorted vision etc.) I'm pretty sure that I have a form of autoimmune encephalitis.

I feel that my case is highly autoimmune and I have come to the conclusion that I will try IVIG or PLEX to see if it helps me at all.

What are the odds of it helping me , and how would I go about getting/receiving the infusions?

 

[Hip]

I'm pretty sure that I have a form of autoimmune encephalitis.

You might be interested in @Shawn's story of NMDA auto-antibodies. This is one of his threads.

 

[crypt0cu1t]

You might be interested in @Shawn's story of NMDA auto-antibodies. This is one of his threads.

I actually tested negative for Nmda antibodies as well as various others, but I could have a form of antibody negative autoimmune encephalitis.

 

[Murph]

You've found the IVIG pioneers I'm aware of. What is PLEX?

 

[Gingergrrl]

As many of you know, I tested positive for AChR Binding Antibodies and salivary protein 1 antibodies as well as an elevated ESR & CRP.

@crypt0cu1t I am still confused, were you diagnosed with Myasthenia Gravis (MG) and/or Sjogrens or at this point do you have the autoantibodies that match those diagnoses but are undergoing further testing to confirm?

The storoes that particularly stand out to me are @Jesse2233 @Gingergrrl @Nickster and a couple others (hope you guys dont mind me tagging you)

I can't speak for Jesse or Nickster but I do not mind at all being tagged.

My condition is rapidly deteriorating and I'm finding it increasingly harder to take care of myself due to my symptoms (Dizziness, weakness, SEVERE mental fatigue, head pressure, distorted vision etc.) I'm pretty sure that I have a form of autoimmune encephalitis.

I still highly suspect that your case is autoimmune even though you have different autoantibodies, and different symptoms, than I did. Although when you say "weakness" do you mean muscle weakness or something else? If so, then we did share that symptom.

I feel that my case is highly autoimmune and I have come to the conclusion that I will try IVIG or PLEX to see if it helps me at all.

What are your doctor(s) saying about this?

What are the odds of it helping me , and how would I go about getting/receiving the infusions?

I don't know of any doctor that could truthfully give you specific odds of it helping (prior to trying it) and no one gave me odds. Both of my doctors felt I was a good candidate (for high dose IVIG for autoimmunity) and both felt that plasmapheresis (PLEX in the US) was too dangerous for me.

If your doctor(s) decides this is the right treatment path, then they put in the request with your insurance and start the denial & appeal process (unless you are a multi-millionaire and can pay privately LOL).

I actually tested negative for Nmda antibodies as well as various others, but I could have a form of antibody negative autoimmune encephalitis.

I actually do not know a lot about NMDA but it sounds like there is a sero-negative type from what you just wrote?

You've found the IVIG pioneers I'm aware of. What is PLEX?

Am I one of the IVIG Pioneers? We need a pioneer emoji LOL. PLEX is plasma exchange and is the main type of plasmapheresis that is done in the US. My understanding is that immunoadsorption is done in Europe & Asia (in which the plasma is cleaned or filtered and then returned to the body) vs. PLEX removes the plasma and replaces it with donor blood, albumin, or another substance.

 

[joanierav]

hi crypt. ive been on gamma globulin for 12 yrs. but i am immune deficient, via immune panel blood work . ive had cfs and fibro for 23 yrs. the infusions do nothing for the cfs symtoms. sorry to say. and you must be deficient for insurance to pay. i get sub q. infusions (in the belly fat) every wk. not fun. the only thing it does for me, is cuts down the many infections i was getting. which of course helps a lot. in fact thats one of the main things, docs look for, is how many infections do you get a yr. mostly sinus ones.

good luck, joanie

 

[crypt0cu1t]

@crypt0cu1t I am still confused, were you diagnosed with Myasthenia Gravis (MG) and/or Sjogrens or at this point do you have the autoantibodies that match those diagnoses but are undergoing further testing to confirm?



I can't speak for Jesse or Nickster but I do not mind at all being tagged.



I still highly suspect that your case is autoimmune even though you have different autoantibodies, and different symptoms, than I did. Although when you say "weakness" do you mean muscle weakness or something else? If so, then we did share that symptom.



What are your doctor(s) saying about this?



I don't know of any doctor that could truthfully give you specific odds of it helping (prior to trying it) and no one gave me odds. Both of my doctors felt I was a good candidate (for high dose IVIG for autoimmunity) and both felt that plasmapheresis (PLEX in the US) was too dangerous for me.

If your doctor(s) decides this is the right treatment path, then they put in the request with your insurance and start the denial & appeal process (unless you are a multi-millionaire and can pay privately LOL).



I actually do not know a lot about NMDA but it sounds like there is a sero-negative type from what you just wrote?



Am I one of the I am still confused, were you diagnosed with Myasthenia Gravis (MG) and/or Sjogrens or at this point do you have the autoantibodies that match those diagnoses but are undergoing further testing to confirm?



I can't speak for Jesse or Nickster but I do not mind at all being tagged.



I still highly suspect that your case is autoimmune even though you have different autoantibodies, and different symptoms, than I did. Although when you say "weakness" do you mean muscle weakness or something else? If so, then we did share that symptom.



What are your doctor(s) saying about this?



I don't know of any doctor that could truthfully give you specific odds of it helping (prior to trying it) and no one gave me odds. Both of my doctors felt I was a good candidate (for high dose IVIG for autoimmunity) and both felt that plasmapheresis (PLEX in the US) was too dangerous for me.

If your doctor(s) decides this is the right treatment path, then they put in the request with your insurance and start the denial & appeal process (unless you are a multi-millionaire and can pay privately LOL).



I actually do not know a lot about NMDA but it sounds like there is a sero-negative type from what you just wrote?



Am I one of the IVIG Pioneers? We need a pioneer emoji LOL. PLEX is plasma exchange and is the main type of plasmapheresis that is done in the US. My understanding is that immunoadsorption is done in Europe & Asia (in which the plasma is cleaned or filtered and then returned to the body) vs. PLEX removes the plasma and replaces it with donor blood, albumin, or another substance.

I am still undiagnosed, but I'm assuming that I would have a diagnosis of the two considering I have antibodies for them and especially have symptoms of sjogrens (dry eyes, dry mouth).

Apparently there are people who present with a type of autoimmune encephalitis that is antibody negative, so its something im looking into at the moment!

I actually do have muscle weakness, its not really a muscle fatigue, just weakness when I try to do things. The only fatigue I have is disabling mental fatigue.

 

[Gingergrrl]

and you must be deficient for insurance to pay.

That is what I had originally thought, too, but (some) insurance will pay for high dose IVIG for autoimmunity if your doctor makes a solid case for it.

I am still undiagnosed, but I'm assuming that I would have a diagnosis of the two considering I have antibodies for them and especially have symptoms of sjogrens (dry eyes, dry mouth).

I have learned from this process that you can have autoantibodies that correlate with specific diagnosis without meeting the full criteria for the disease.

For example, I have the two Hashimoto's autoantibodies and I also have the disease so everything fits together. But at the same time, I have autoantibodies where I do not meet the full criteria of the disease (like the calcium autoantibody and LEMS) but IVIG & Rituximab eliminated the symptoms that I had regardless.

I don't actually know if there are diseases where if you have the autoantibody then you therefore have the disease even if you do not meet full criteria. I'd still really like to learn more about all this.

Apparently there are people who present with a type of autoimmune encephalitis that is antibody negative, so its something im looking into at the moment!

I would definitely 100% pursue this further as you are doing.

I actually do have muscle weakness, its not really a muscle fatigue, just weakness when I try to do things. The only fatigue I have is disabling mental fatigue.

I never had mental fatigue but I had severe muscle weakness that was getting worse until I started treatment. I got to the point that I could not turn on the faucets in my shower or open my front door. This is all now completely gone and it is hard to believe that I could not do those things although I still remember it clearly. Do you have muscle weakness like that or is it different?

 

[crypt0cu1t]

That is what I had originally thought, too, but (some) insurance will pay for high dose IVIG for autoimmunity if your doctor makes a solid case for it.



I have learned from this process that you can have autoantibodies that correlate with specific diagnosis without meeting the full criteria for the disease.

For example, I have the two Hashimoto's autoantibodies and I also have the disease so everything fits together. But at the same time, I have autoantibodies where I do not meet the full criteria of the disease (like the calcium autoantibody and LEMS) but IVIG & Rituximab eliminated the symptoms that I had regardless.

I don't actually know if there are diseases where if you have the autoantibody then you therefore have the disease even if you do not meet full criteria. I'd still really like to learn more about all this.



I would definitely 100% pursue this further as you are doing.



I never had mental fatigue but I had severe muscle weakness that was getting worse until I started treatment. I got to the point that I could not turn on the faucets in my shower or open my front door. This is all now completely gone and it is hard to believe that I could not do those things although I still remember it clearly. Do you have muscle weakness like that or is it different?

I do periodically get muscle weakness, but my main issue is the derealization/mental fatigue and head pressure feelings. I feel like im close to slipping into a coma most days.