Symptoms are worse after pp treatment

Do you mean plasmapheresis? Did you have IvIg first? With what result?

There is no easy and quick way to find the optimal treatment for a case of CIDP. In my case, I did not start to improve until near the end of sequence of nine plasma exchange treatments over a period of about three weeks.

Definitions: 1) Plasmapheresis (PP) – plasma is separated, removed (i.e. less than 15% of total plasma volume) without the use of replacement solution. 2) Plasma Exchange (PE) – plasma is separated, removed and replaced with a replacement solution such as colloid (e.g. albumin and/or plasma) or combination of rystalloid/colloid.

Please confirm if you had PP or PE. If PP, the likelihood that your auto-immune system was not fully cleaned is high. If PE, please be aware that some of the bad-guy antibodies could have been very deep in your veins and won’t be removed until they surface. That is why PE sometimes takes longer to produce results for some. Neither PP nor PE will not stop your auto-immune system from producing more bad-guy antibodies, that job belongs to IVIg or SCIg, and to a smaller extent, corticosteroids.

The replacement fluid used during PE can be an important factor influencing the result of PE. The choice includes fluids such as electrolyte solutions, gelatin, hydroxyethyl-starch, albumin and fresh frozen plasma. In a comparison of the clinical efficacy of two PE preparations, 5% human serum protein (HSP) and 5% human albumin (HA) … HSP may have some advantages over HA.

A typical PE treats a volume of 40-60 ml/kg and uses 3L 5% albumin (each alb. 250cc). A typical one week treatment of full volume PE, depending on the fluid type, can remove up to 95% of abnormal plasma constituents.

If you had PE, do you know what fluid was used and how much?

You came down with CIDP a couple years before me (2006 vs 2008). Has yours been in remission until recently? I’m still in remission but have not regained my ability to walk since 2008.

PE works when there are bad anti-bodies that can be removed from the blood and that removal will stop further demyelination. In my case the demyelination had gone way too far before PE stopped it. In your case I hope you stopped it in time so you can recover well.