beth/plasmaphresis
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March 31, 2008 at 3:12 pm
Will have my fourth phresis in AM. So far nothing has changed and i had such high expectations. Have had a slight reaction of nausea, cold, and clammy, dizzy, headache and low back ache each time. # 3 was less of a reaction as tech lowered the infusion rate and had a blood warmer.
i’m beat the day after. totally useless and very thirsty and exhausted. is this normal is it from the reactions?
will have my last phresis on thurs.
how long does it take to have a positive reaction and how long does one go inbetween treatments.
Thanks to all -
March 31, 2008 at 6:46 pm
I saw improvement after my 3rd PP. I have been doing PP since Aug of last year. I go everyother week. My neuro tried to space them out to every three weeks but I sarted to show signs of relaspe. IVIG did not work fo me.
I have my PP on a Friday–after work it takes about 1hr 45 min. I usually climb into my bed as soon as I get home and put as many blankets on me as I can stand because I feel like I can not warm up. Make sure you drink plenty of fluids before your treatment. Good luck
MJ -
April 1, 2008 at 9:59 am
cincycat1 – are you from Cincinnati? If so, who is your neurologist?
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April 1, 2008 at 9:54 pm
Beth, You will feel like crud after each one. I resume normal, activity about noon the next day. Drinking plenty of fluids helps, I do think Gatoraide or similair helps afterwards. I can’t recall how fast I responded, but then after 600 treatmetns, well lets say I have a pattern. Take care.
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April 5, 2008 at 5:59 pm
Beth,
Plasmapheresis response is so variable for each person, it is hard to predict for any one person. For example, I find the blood warmer to be nearly useless if set at 37 °C (the units that my hospital uses, or 98.6 °F). However, if set to 37.6 °C (99.7 °F), it makes me feel lousy. I sometimes feel a little tired and not quite with it after a seesion. Other times, I can go back to work. Other than occasional, very mild nausea, which passes in a few minutes, my only symptom is orthostatic hypotension.
I usually see improvement after the third session, but sometimes after the second. However, if this is your first round of treatments, it could take a while to see improvement, so don’t worry too much yet. I usually get to maximal improvement a week or so after the last seesion. Give it a week after your last session. If you have not seen any improvement by then, you may need to try another round or follow some other treatment regime.
As for the time between sessions, I have gone as long as five weeks and as short as two. How long depends on the effectiveness of my other therapies. With my current regime of prednisone and azathioprine (although the effectiveness of the azathioprine is not obvious yet), I get five weeks. Without them, I get two.
Godspeed in sorting out your treatment,
MarkEns -
April 6, 2008 at 3:58 am
Hi Beth
I had plasmapheresis for nine weeks, 3 times a week. I was in a pretty bad state by the time we tried it, depsite having been on gabapentin and morphine for pain, with semi-regular IVIg (every 5-6 weeks at that point). I had so much discomfort that I could not wear shoes at all, and clothes were causing quite significant allodynia.
I found that it took about two-three weeks before I felt any sort of real improvement. Just make sure that you are getting the calcium top up regularly, as I found that this was the worst side effect and the potential downstream problems with osteoperosis, etc. are significant.
It was a slow but sure improvement, so don’t give up yet. Take care – it is invasive, but it certainly changed my situation hugely. 🙂
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