Plasma exchange time to improvement?
February 21, 2017 at 7:49 pm
Hello, I was wondering how long it typically takes to see an improvement after plasma exchange? Initial treatment was solumedrol, which made my good leg a lot worse. We then moved to IVIG, three infusions of 1.0, 1.5 then 1.0 g/kg with two weeks in between. The only change there was my skin breaking out about a week after the 2nd treatment. Most recently I had 5 plasma exchanges, the first was a partial with 18 gauge needles. Then a week off to do a catheter after switching blood thinner. After that the four PEs were 3 liters each. The last one was last friday so it has been four days since then.
Thanks for your help.
February 21, 2017 at 11:46 pm
I was on a typical combination of PE with Prednisone. I started treatments with a central venous tunneled catheter. I felt improvement 3 days after my first treatment. I went on to about 50 PE’s all together.
More info about PE can be read here:
The formula most doctors use for calculating volumes for PE treatments:
Estimated plasma volume (in litres) = 0.07 x wt (kg) x (1 – hematocrit)
So, 1 plasma volume in 80kg male with Hct of 30 (0.3) = 0.07 x 80 x 0.7 = 3.92L
1.5 plasma volumes = 3.92 x 1.5 = 5.88L
Whereas… 1 plasma volume in 60kg female with Hct of 35 (0.35) = 0.07 x 60 x 0.65 = 2.73L
February 22, 2017 at 12:25 pm
Jack, I don’t think there is any typical course that response to treatment will take for CIDP. My own case is atypical to begin with. Although I was ultimately diagnosed with CIDP, the initial diagnosis was GBS. I am atypical under either diagnosis.
I received nine PE treatments through a Quinton catheter in the groin. At the start I was paralyzed below the neck. I literally could not lift a finger. I think it was after about seven treatments that I started to move one finger.
March 19, 2017 at 3:11 pm
Jim and GH,
Thanks for the information. As an update I saw little or no improvement from the 4-5 PE treatments. I am now wondering if the CIDP diagnosis was valid (based upon the elevated protein level from a spinal tap). Strike one was the two weeks of solumedrol (1000 mg/day); strike two was the IVIG (3 treatments), and strike three was the PE exchange. The final straw was trying to get the follow-on treatment. Originally the neurologist said yes (was out of the country), and I verified that the order could be sent to the hospital and they would do it. After multiple phone calls over 4 days I was then told that the hematologist would have to order, who I had seen the previous wednesday and said the neurologist would decide. Of course the hematologist only worked a few hours on Monday, then was out until Wednesday and my permacath dressing was over a week overdue relative to the prescribed dressing change. I elevated my concern on a decision, then phoned the quality department who said they would get back to me the next day. That never happened, and I ended up calling again a few days later but could only leave a message. I finally ended up going to the hospital for a dressing change only, and was told by the head nurse that they would find out what to do and let me know. She received the same answer that the hematologist needed to be consulted, who was out until Wednesday. The answer finally came back that they decided no more PE, and then later that I should have the permacath removed. Their level of care leaves a lot to be desired, as after my previous visit a month ago I was told the next available appointment was June, so they put me down for that. So much for Beaumont Royal Oak.
So I now have an appointment next week at Wayne State (center of excellence), to hopefully confirm or deny the diagnosis. My question is what else might have the elevated protein level and cause progressive leg weakness, tremors, etc. A previous diagnosis was possible ALS, based upon a reflex test and not much else. I am still making it to work with the help of a rollator, but I’m not sure how much longer I can make it the distance to my desk. I think if an effective treatment isn’t found soon I will be forced to retire. Also I live in a two story house, where all the bedrooms and showers are on the 2nd floor. Hopefully we can get a stair lift.
Thanks for your help.
March 21, 2017 at 1:26 pm
Yes, by all means, if you can be seen at a Center of Excellence that would be beneficial.
I consider this quote from
- Ther Adv Neurol Disord. 2012 Nov; 5(6): 359–373
to sum up a lot of things:
“Although guidelines for the diagnosis and treatment of CIDP have been developed, the large variety of clinical and electrophysiological variants, associated systemic conditions, and lack of sustained improvement with standard treatments in up to one third of cases provide challenges to the clinician in practice.”
The detailed answers to some of your questions are covered here:
I hold a vague recollection that multi-focal motor neuropathy (mmn) responds poorly to prednisone and it has CSF protein: Mildly elevated in 33%.
You’re on the right track to find good doctors to help you sort this out.
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