Anyone tried Plasma exchange as an alternative to IVIG?

Hoosierfans

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Following. I know back when I had stem cell therapy (3 years ago), there were several folks who had tried plasmapheresis and found it helpful. Is that what you are talking about?
 

ChookityPop

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Following. I know back when I had stem cell therapy (3 years ago), there were several folks who had tried plasmapheresis and found it helpful. Is that what you are talking about?
Yes, plasmapheresis! Interesting. It seems to be quite similar to IVIG. Do you remember How they improved?
 

ChookityPop

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Hoosierfans

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Yes, plasmapheresis! Interesting. It seems to be quite similar to IVIG. Do you remember How they improved?
Ya know I don’t remember the details. Many of us had undergone autologous stem cell therapy at a clinic that had clinics in California and Germany (operating under the name Infusio) that turned out to be a total scam...and a lot of us ended up with reactivated viruses as a result of the treatment. One patient who was particularly immune savvy convinced her doc to let her undergo plasmapheresis and she found it helpful to get down her viral load and get antibodies in check...there were several other patients who were pursuing it but most of us didn’t have docs or immunologists treating us that were willing to consider it.
 

Gingergrrl

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do you know of any clinics that does it in Europe? Or elsewhere.
I am not familiar with what is available in Europe (and I am in the US). I have heard of prior research studies involving plasmapheresis at the Charite in Berlin (with Dr. Scheibenbogen) although I do not know if those are still happening now.

It seems to me like this treatment could potentially be effective for patients that would benefit from IVIG. But I may be wrong.
I have never done plasmapheresis but I did two years of IVIG. My understanding is that plasmapheresis (for autoimmunity) can quickly determine if someone is a responder BUT the benefits are also very short-lived so the treatment would need to keep being repeated. But if someone is a responder to plasmapheresis (for autoimmunity), than there is a very good chance that they would also be a responder to high-dose IVIG (although the results would not be as quick). I hope this makes sense and I am not sure if I explained it well?!
 
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@Gingergrrl I've read about your experience with ivig. Do you know about a lower dose helping autoimmunity? I did a couple and stopped for now. I want to start again at some point later but the logistics and financials are confusing because if i can say do 10 grams one day, 10 a couple days later, and 10 the week after, to keep the severity down but the effectiveness up, that's a bit lower than half my body weight (I can't remember what the formula is) and maybe I would do that for a handful of months if I thought it turned out to be game changing in recovery but I can't keep it up for much longer than that financially. I just don't know how to allocate resources for the best trial because I don't know what the best trial would be for me that is the least amount to be effective. I don't have anything insurance would cover unfortunately. It will be an ongoing discussion with my provider when I decide to start again but I'd be curious on your input. My provider talked about someone who manages their autoimmune condition with just 10 grams a month and that confuses me. I have mcas and if a low dose like 10g could potentially improve that, that's worth the investment over a longer period even if it doesn't help any autoimmunity. My understanding so far is that low dose can be immune modulating and high dose is specifically for autoimmunity, but if something is immune modulating doesn't that mean putting anything out of ideal function back into function and can include turning off autoimmunity? I don't know the actual definition I'm just guessing based on similarity to the term "regulating". I mean has anyone actually studied what happens with a lower amount in autoimmunity? If you want to message me so the thread stays on chookitypops topic then that would be great, any advice appreciated. Also though, this could pertain to @ChookityPop if perhaps lower dose can help with autoimmunity sometimes then that would bring the cost down...

Oh worth pointing out that someone with long covid who had it past 6 months and was diagnosed with mecfs did I think 4 treatments of ivig at the doctor's office I did mine at, the last one getting up to 40g but starting with only 10 and then maybe 20? and recovered a lot of her function. She had a lot of issues get bad quickly like development of full mcas, symptomatic eds, and a huge loss of function including cognitive. She's now back working as a physicians assistant after only a few rounds of ivig and didn't do that much else as far as treatment at the time. Wow right?
 
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Hoosierfans

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@Hoosierfans that's so horrible. How was it a scam? They didn't actually process the tissue or marrow correctly? Did you get any recompense. So sorry...
It’s kind of a long story, but basically they had a very strong social media presence / marketing that was very convincing. They claimed that they had an 85 percent success rate for Lyme patients and CFS patients and had *some* data to back that up. They also claimed that there was no risk of worsening. And that their program was individualized to the patient.

They claimed that the healing process from stem cells would take 6 months...then as patients who did it started reporting that they were not getting better, the timeline changed to 9 months...then 12-18 months as more and more patients went and “waited” when they got home and time passed.

A group of patients who had gone (myself included) were discussing what was going on as time passed and we started investigating and contacting patients we knew...and while there were some that got better it was maybe 25 percent of patients....not 85 percent. About another 30 percent had no change and, importantly, another 30 percent got much worse. We (myself included) developed issues we never had before — mast cell activation and viral reactivation were most common.

It got so bad that a group of about 50 patients filed a complaint against them w the FTC, the California Medical Board, the Los Angeles District Attorney. Unfortunately we couldn’t find an attorney to take on a class action and sue them because the company had been very careful to hide their assets off-shore through a bunch of shell companies. We wouldn’t be able to reach their assets even if we were successful in court. 😓

They closed down for awhile but my understanding is that they reopened. I haven’t checked.
 

ChookityPop

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@Gingergrrl I've read about your experience with ivig. Do you know about a lower dose helping autoimmunity? I did a couple and stopped for now. I want to start again at some point later but the logistics and financials are confusing because if i can say do 10 grams one day, 10 a couple days later, and 10 the week after, to keep the severity down but the effectiveness up, that's a bit lower than half my body weight (I can't remember what the formula is) and maybe I would do that for a handful of months if I thought it turned out to be game changing in recovery but I can't keep it up for much longer than that financially. I just don't know how to allocate resources for the best trial because I don't know what the best trial would be for me that is the least amount to be effective. I don't have anything insurance would cover unfortunately. It will be an ongoing discussion with my provider when I decide to start again but I'd be curious on your input. My provider talked about someone who manages their autoimmune condition with just 10 grams a month and that confuses me. I have mcas and if a low dose like 10g could potentially improve that, that's worth the investment over a longer period even if it doesn't help any autoimmunity. My understanding so far is that low dose can be immune modulating and high dose is specifically for autoimmunity, but if something is immune modulating doesn't that mean putting anything out of ideal function back into function and can include turning off autoimmunity? I don't know the actual definition I'm just guessing based on similarity to the term "regulating". I mean has anyone actually studied what happens with a lower amount in autoimmunity? If you want to message me so the thread stays on chookitypops topic then that would be great, any advice appreciated. Also though, this could pertain to @ChookityPop if perhaps lower dose can help with autoimmunity sometimes then that would bring the cost down...

Oh worth pointing out that someone with long covid who had it past 6 months and was diagnosed with mecfs did I think 4 treatments of ivig at the doctor's office I did mine at, the last one getting up to 40g but starting with only 10 and then maybe 20? and recovered a lot of her function. She had a lot of issues get bad quickly like development of full mcas, symptomatic eds, and a huge loss of function including cognitive. She's now back working as a physicians assistant after only a few rounds of ivig and didn't do that much else as far as treatment at the time. Wow right?
Your IVIG dosage discussion etc is ofc welcome in this thread! Super interesting. I have also heard of ME patients getting better with like 1g immunolgobulins a week. But I think it took a very long time. The kid went from being mostly housebound to a few hours at school a week and later on went fishing with his buddies etc.
 

ChookityPop

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I have never done plasmapheresis but I did two years of IVIG. My understanding is that plasmapheresis (for autoimmunity) can quickly determine if someone is a responder BUT the benefits are also very short-lived so the treatment would need to keep being repeated. But if someone is a responder to plasmapheresis (for autoimmunity), than there is a very good chance that they would also be a responder to high-dose IVIG (although the results would not be as quick). I hope this makes sense and I am not sure if I explained it well?!
Interesting! Can I ask why you took two years of IVIG and not longer?
And you explained it very well thank you! Im glad there is a cheaper alternative that I maybe can get my hands on though IVIG is my nr one priority.
 

Gingergrrl

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Your IVIG dosage discussion etc is ofc welcome in this thread! Super interesting.
Thanks for confirming that @ChookityPop and I was waiting to reply to @PisForPerseverance until you responded b/c I did not want to take your thread off-track!

@Gingergrrl I've read about your experience with ivig. Do you know about a lower dose helping autoimmunity?
I have not heard of low dose IVIG helping with autoimmunity (but that doesn't mean that it hasn't happened)! When I was first researching IVIG in 2016, I joined two private facebook groups re: IVIG and I asked a ton of questions there and no matter how obscure, there was always someone who knew the answer.

that's a bit lower than half my body weight (I can't remember what the formula is)
I apologize that I do not remember the different formulas for IVIG but I think @Learner1 does.

I just don't know how to allocate resources for the best trial because I don't know what the best trial would be for me that is the least amount to be effective. I don't have anything insurance would cover unfortunately.
Do you have a doctor who is helping you with this? Also, are you in the US or another country?

I have mcas and if a low dose like 10g could potentially improve that, that's worth the investment over a longer period even if it doesn't help any autoimmunity. My understanding so far is that low dose can be immune modulating and high dose is specifically for autoimmunity, but if something is immune modulating doesn't that mean putting anything out of ideal function back into function and can include turning off autoimmunity?
My understanding is that IVIG is immune modulating in general but it is used in low dose to modulate for immune deficiency and high dose to modulate for autoimmunity. There are different schools of thought re: whether MCAS is an autoimmune disorder. I had very severe MCAS with anaphylaxis (plus three other autoimmune diagnoses) and the IVIG put my MCAS into remission.

My MCAS specialist (an allergist/immunologist who is now retired) said that he had many patients in which IVIG put their MCAS into remission and I am pretty sure that he did not use high dose IVIG for them. We used high dose IVIG in my case b/c I had severe autoimmunity with eleven autoantibodies (separate from the MCAS). In my case, the severe muscle weakness that affected my ability to breathe from LEMS, plus my Autoimmune POTS, did not go into remission until I had done nine months of Rituximab. But the MCAS went into remission from IVIG alone.

I mean has anyone actually studied what happens with a lower amount in autoimmunity? If you want to message me so the thread stays on chookitypops topic then that would be great, any advice appreciated.
I do not know if anyone has studied low dose IVIG for autoimmunity.

someone with long covid who had it past 6 months and was diagnosed with mecfs did I think 4 treatments of ivig at the doctor's office I did mine at, the last one getting up to 40g but starting with only 10 and then maybe 20? and recovered a lot of her function. She had a lot of issues get bad quickly like development of full mcas, symptomatic eds, and a huge loss of function including cognitive. She's now back working as a physicians assistant after only a few rounds of ivig and didn't do that much else as far as treatment at the time. Wow right?
This is great news, and it does not surprise me at all, and I think that IVIG will turn out to be very helpful with Long COVID. Although I don't think it is known yet if the mechanism behind Long COVID is autoimmunity or something else? It may even turn out that there are different sub-sets within Long COVID and not everyone is the same. There is still so much to learn.
 

Gingergrrl

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Interesting! Can I ask why you took two years of IVIG and not longer? And you explained it very well thank you! Im glad there is a cheaper alternative that I maybe can get my hands on though IVIG is my nr one priority.
I think we posted at the same time and I missed this question. There were a few reasons why I only did two years of IVIG. But the main one was that IVIG alone was working like a band-aid (for symptom relief) but it would have to be repeated indefinitely to continue working. IVIG was only affecting the fully-grown autoantibodies but it did not stop my B-cells from constantly creating new auto-antibodies.

So after one year of IVIG, my doctor added Rituximab (and we overlapped them for a year). The Rituximab killed all B-cells which stopped the autoantibodies at the production level. After nine months of Ritux (on top of the ongoing IVIG), I went into remission. So that meant we had stopped the fully grown autoantibodies plus we had stopped new ones from being produced. At that point, Ritux alone was able to maintain my remission so we stopped the IVIG but continued the Ritux.

I did maintenance infusions of Ritux (2x per year) until COVID hit the world and then my doctor had me stop Ritux b/c he felt it was too dangerous for me to be immuno-compromised (with no B-cells) during the early days of COVID (when basically nothing was known about COVID yet). My B-cells are now fully back and functional without the Rituximab. And, luckily, I have maintained my remission without it so we are assuming that my new B-cells have grown back healthy. But only time will tell.
 

Learner1

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I apologize that I do not remember the different formulas for IVIG but I think @Learner1 does.
I hope I'm understanding the question - from what I've seen, .4g/kg body weight per month is typically prescribed for immunodeficiency, and .75-2.0g/kg for autoimmunity. I did .75g/kg per month for my autoimmune issues.

As for MCAS, Dr. Weinstock gave a patient 2.0g/kg which dramatically helped her - see attached.
 

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@Gingergrrl thanks very helpful. That's so awesome that your b cells grew back healthy! I assumed from your past posts that your mcas went into remission for a reason other than that it was driven by autoimmunity. That's interesting that that's a possibility. That's great that your doctor said he had a lot of people go into remission from mcas, that's what I'm hoping. .4g a kg would be 20g a month for me. Damn I was hoping an amount like that would be much higher of a percentage of my weight. It's 40 times weight divided by 100 right? I don't have immune deficiency at least as measured by immunoglobulins, and the autoimmunities I have that I have data for, wouldn't be covered. I wonder if a lawyer could help? I wonder if people have had success with coverage with off label usage for autoimmunity? That would be precedent. I'm in the US by the way.. privigins assistance program isn't for my conditions either, from what I remember it seems like these company assistance programs are also for on label usage. I could be wrong. It's worth maybe asking them and gamutex as well. Gingergirrl in your groups did people talk about getting off label coverage that you remember? Or assistance for off label usage? I have a doctor that was helping me with this yes, she doesn't have all the knowledge I'd want about all the various dosages and timings beings used out there which I want to know so I can confidently say I'm stretching my dollar as far as it can go by doing the least amount advisable. I won't be starting up again for a little while anyway. @Learner1 thanks the first one is a great reference. I'd seen the second one before, he used 1.5g/kg, good to see good news
 

Gingergrrl

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@Gingergrrl thanks very helpful. That's so awesome that your b cells grew back healthy!
I'm glad I could help and apologize for my delayed reply! We are assuming that my b-cells grew back healthy based on blood tests and the remission of my symptoms. I do not know if there is an absolute way to know for sure. But I need to do everything possible to avoid triggers that could provoke and reactivate the autoantibodies which is why I've made the choice not to get the vaccine (because it is incredibly immuno-stimulatory and could reverse the benefits from my 3-years of infusions). I feel like my remission is still very fragile (if that makes any sense)?!

I assumed from your past posts that your mcas went into remission for a reason other than that it was driven by autoimmunity. That's interesting that that's a possibility. That's great that your doctor said he had a lot of people go into remission from mcas, that's what I'm hoping.
My former MCAS specialist told me that he had many patients go into remission from IVIG. He viewed it as an immune-modulator that could tamp down the allergic reactions but he never used the word autoimmune with me (in regard to MCAS). I had three other autoimmune diagnoses in addition to the MCAS.

IVIG is one of the most helpful treatments I have ever seen and works for all types of immune system irregularities from immune deficiency to autoimmunity in both acute and chronic disorders. My doctors said that often the precise mechanism of why the IVIG works is not always known.

4g a kg would be 20g a month for me. Damn I was hoping an amount like that would be much higher of a percentage of my weight. It's 40 times weight divided by 100 right?
I apologize that I don't remember the formulas used to calculate IVIG dosing. Math is not my strong-suit and my doctors calculated the dosage that they felt was best for me (which actually ended up being much higher than I was able to tolerate so we ultimately went w/the dose that I tolerated which was 82 grams in a 3-day split dose).

I don't have immune deficiency at least as measured by immunoglobulins, and the autoimmunities I have that I have data for, wouldn't be covered.
I did not have any immune deficiency either. Which autoantibodies are you positive for? (and I apologize if you have just explained this)! I am talking to a few people at the moment who have asked me questions re: IVIG and I don't want to confuse anyone :xeyes:

I wonder if a lawyer could help? I wonder if people have had success with coverage with off label usage for autoimmunity? That would be precedent.
I don't think a lawyer would be helpful at this stage unless you have exhausted all levels of insurance appeals. There are definitely situations that IVIG is prescribed off-label but it is nuanced. Please feel free to PM me if it would be helpful. It really depends on your diagnoses and type of insurance (and other factors).

I'm in the US by the way. privigins assistance program isn't for my conditions either, from what I remember it seems like these company assistance programs are also for on label usage. I could be wrong. It's worth maybe asking them and gamutex as well.
I just Googled privigins and was not sure what it was (but it sounds like a specific brand of IVIG). The only brand of IVIG that I had for the entire two years was Gamunex. My MCAS doctor felt that I would not be allergic to Gamunex and he was correct. I think this is what you meant when you said "gamutex"?

Gingergirrl in your groups did people talk about getting off label coverage that you remember? Or assistance for off label usage?
I have not posted in those groups since 2018 but they literally talked about everything. I can give you the name of the two IVIG groups in a PM if it would be helpful. I don't want to post it publicly since they were private groups.
 
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Thanks I appreciate your advice and help. So far my autoimmune markers are an anti myelin one can't remember the name off hand, one that's for glucose and blood brain barrier, and an anti adrenergic one. I would check the names but I'm at day 2 of my vaccine so I'm too fluey at this moment to go into my files on my phone. I mean... I could feel this way on any day it just happens to be the vaccine today. I'm sure I could do much more extensive testing. I did extensive testing for neurological antibodies, but not other ones, except for cell trend. I used to have anti thyroglobulin antibody but no longer, and used to have positive ana but no longer. One doctor thinks I have small fiber neuropathy but I don't want to do the biopsy unless it'll help me get ivig. I don't heal that well with a worsening eds right now and that plus the whole disrupting meridians through scars, it's not necessary. If I ever had an MRI that showed ms development which god forbid I hope not, I'm sure ivig is covered for that. Or maybe. Anyway, I'm determined to get help paying for it. I will take you up on that offer and message you about off label usage I appreciate your offer.

I meant gamunex yeah. Privigen is formulated to have low or no igA in it and is supposed to be safer for mcas and anyone who has low igA or anti igA which you probably know, I might have actually learned that from you, or someone on pr, before I started my first one. I'm taking a break because I feel like I could get traction/am getting traction other places first that would make ivig more likely to be helpful, with less rounds. Just theorizing though. For example gut infections. Reducing endometriosis disease process which is going well. Things like that.

I cannot even imagine doing 80g in three days. 10g felt pretty bad after. Definitely manageable though. I've done three treatments of 10g, the last two were in the same week. I weigh little for an adult so I wouldn't ever need to go as high as 80g anyway unless I was doing around 1.7g/kg ish which seems like for autoimmunity 1.0g/kg can be sufficient depending, from what I remember reading. The paper posted above she did 1.5. So maybe one day. But I seriously can't imagine. I may have read about it being awful for you after.
I'm glad I could help and apologize for my delayed reply! We are assuming that my b-cells grew back healthy based on blood tests and the remission of my symptoms. I do not know if there is an absolute way to know for sure. But I need to do everything possible to avoid triggers that could provoke and reactivate the autoantibodies which is why I've made the choice not to get the vaccine (because it is incredibly immuno-stimulatory and could reverse the benefits from my 3-years of infusions). I feel like my remission is still very fragile (if that makes any sense)?!



My former MCAS specialist told me that he had many patients go into remission from IVIG. He viewed it as an immune-modulator that could tamp down the allergic reactions but he never used the word autoimmune with me (in regard to MCAS). I had three other autoimmune diagnoses in addition to the MCAS.

IVIG is one of the most helpful treatments I have ever seen and works for all types of immune system irregularities from immune deficiency to autoimmunity in both acute and chronic disorders. My doctors said that often the precise mechanism of why the IVIG works is not always known.



I apologize that I don't remember the formulas used to calculate IVIG dosing. Math is not my strong-suit and my doctors calculated the dosage that they felt was best for me (which actually ended up being much higher than I was able to tolerate so we ultimately went w/the dose that I tolerated which was 82 grams in a 3-day split dose).



I did not have any immune deficiency either. Which autoantibodies are you positive for? (and I apologize if you have just explained this)! I am talking to a few people at the moment who have asked me questions re: IVIG and I don't want to confuse anyone :xeyes:



I don't think a lawyer would be helpful at this stage unless you have exhausted all levels of insurance appeals. There are definitely situations that IVIG is prescribed off-label but it is nuanced. Please feel free to PM me if it would be helpful. It really depends on your diagnoses and type of insurance (and other factors).



I just Googled privigins and was not sure what it was (but it sounds like a specific brand of IVIG). The only brand of IVIG that I had for the entire two years was Gamunex. My MCAS doctor felt that I would not be allergic to Gamunex and he was correct. I think this is what you meant when you said "gamutex"?



I have not posted in those groups since 2018 but they literally talked about everything. I can give you the name of the two IVIG groups in a PM if it would be helpful. I don't want to post it publicly since they were private groups.