Day four of Plasmapheresis

[crypt0cu1t]

Hello everyone,

I've been receiving plasmapheresis 3 times a week until the 23rd. I'm currently on my fourth treatment but still have yet to see any improvement aside from one decent day. My antibodies are now at 0 and my ESR/CRP are still elevated but greatly decreasing.

Dr. Chheda says I need to give this at least a few weeks before deciding that it doesnt work for me, but I cant help these feelings of despair and discouragement.. I was always under the impression that PLEX was very fast acting in terms of symptom relief and now this whole thing is making me question if autoimmunity is my issue.

My doctor here has told me dysautonomia patients typically need at least 10 to start noticing differences so I do still have some hope, but I cant shake the negative feelings.

If this doesn't work, I dont know if I should pursue rituximab, photopheresis, or cellcept as my condition may not even be autoimmune or if I should pursue my retroflexed odontoid. Does anyone have some input?

 

[borko2100]

If 'something in the blood' hypothesis is correct then you might see improvements. But then again, maybe that something in the blood cannot be removed with plasmaparesis.

 

[Marky90]

If 'something in the blood' hypothesis is correct then you might see improvements. But then again, maybe that something in the blood cannot be removed with plasmaparesis.

Depends on what you are removing with the plasmapheresis

 

[valentinelynx]

I certainly understand the despair when treatments you had high hopes for don't seem to work! Still, why not ask Dr. Chheda these questions? She and her clinical partner, Dr. Kaufman, are well versed in these treatments (at least regarding rituximab and CCI—I didn't know they were prescribing plasmaphereis, photopheresis or CellCept). If you have a doctor experienced with using plasmapheresis for dysautonomia I'd listen to his/her advice. What sort of autoantibodies were you diagnosed with?

 

[Gingergrrl]

I've been receiving plasmapheresis 3 times a week until the 23rd.

I've been wanting to reply to your thread and sorry I've been so slow! I guess today is your last PP since it is the 23rd? I hope it is going well.

My antibodies are now at 0

That is so interesting and in my case, even though I had dramatic improvement (and still do) from IVIG & Rituximab, none of my autoantibodies ever reached zero. Most of them went down but the one most disturbing to us (the LEMS/ Calcium Channel Ab) did not go down at all which surprised us.

Dr. Chheda says I need to give this at least a few weeks before deciding that it doesnt work for me, but I cant help these feelings of despair and discouragement.. I was always under the impression that PLEX was very fast acting in terms of symptom relief and now this whole thing is making me question if autoimmunity is my issue.

I never did PP or PLEX but was also under the impression that the improvement was very quick (which helped for diagnostic purposes). But I really don't know what is considered "quick" and maybe it depends which autoantibodies you have? If Dr. Chheda said to give it a few weeks, that seems reasonable.

If this doesn't work, I dont know if I should pursue rituximab, photopheresis, or cellcept as my condition may not even be autoimmune or if I should pursue my retroflexed odontoid. Does anyone have some input?

What do your doctors think? I don't remember what retroflexed odontoid means (but assume it is related to neck problems and CCI)? If you do have this problem, can it also be treated? I am assuming it is not mutually exclusive with treating autoimmunity?

I certainly understand the despair when treatments you had high hopes for don't seem to work! Still, why not ask Dr. Chheda these questions? She and her clinical partner, Dr. Kaufman, are well versed in these treatments (at least regarding rituximab and CCI

I agree and would talk to Dr. Chheda.

I didn't know they were prescribing plasmaphereis, photopheresis or CellCept

Dr. K definitely was not prescribing plasmapheresis back in 2016 when I wanted to try it, but he also felt it was not safe for me and perhaps there were other cases (different than mine) where he did feel it was safe. I have never heard of him prescribing photopheresis but maybe this is new (or maybe another doctor is prescribing it)? He also felt CellCept was way too dangerous in my case which was okay b/c I would not have been willing to wipe out my entire immune system and agree it was too dangerous for me (vs. Rituximab which just targets B cells and leaves everything else intact).

 

[crypt0cu1t]

I never did PP or PLEX but was also under the impression that the improvement was very quick (which helped for diagnostic purposes). But I really don't know what is considered "quick" and maybe it depends which autoantibodies you have? If Dr. Chheda said to give it a few weeks, that seems reasonable

Well it seems like a lot of people notice a difference within 3 treatments but doctor chheda and the doctors at the apheresis clinic say that 10 sessions is the minimum to noticeimprovement.

I'll be going back for two treatments every other week indefinitely and we are possibly going to add rituximab into the equation.

I dont want to jinx anything, but I am feeling decently well today! I seem to have a pattern of a couple bad days then a good day whereas before it was all bad days and I kept declining.

 

[Gingergrrl]

but doctor chheda and the doctors at the apheresis clinic say that 10 sessions is the minimum to noticeimprovement.

I would definitely listen to them and they have a lot of experience.

I dont want to jinx anything, but I am feeling decently well today! I seem to have a pattern of a couple bad days then a good day whereas before it was all bad days and I kept declining.

This is great news!