Is the plasma exchange working??
February 8, 2012 at 12:14 am
I has a series of 5 exchanges a little over two weeks ago. My Dr. said to give it two months to see if it was working and im scheduled to see her in March to decide. First, from what Ive read on here, a lot of people noticed the effect right away–it didnt take two months.
I realize it is different for everyone, did others notice effect this far away or was it always sooner? Exactly how much progress should one expect from a series of 5 exchanges, Ive noticed some sensory changes but not a lot of strenght increase.
My cidp is the very slowly progressive type–possibly the healing will be the same, and that’s why it’s so hard to determine?
If I didnt get much improvement from this the first time, is there any sense in trying for another series of exchanges, or should i just move onto the next plan? Sorry so many questions–but all of your experiences and info are so helpful in making decisions regarding this disease.
February 8, 2012 at 4:29 am
Typically, you should notice an improvement in a couple of weeks, if not sooner. However, you might need two or three rounds in order to see effect. Further, most textbooks say that PE has to be repeated every couple of weeks to maintain effectiveness. Taking those two ideas together suggest that two or three rounds of treatments spaced every 10 days to 2 weeks should be done before deciding that plasma exchange is of limited value. Waiting a couple of months to see if it worked seems to me to be out of line with standard experience. I would press your doctor for another round much sooner.
February 8, 2012 at 12:41 pm
thanks Markens—-so you would try another round, even if the first round didnt produce significant results? That’s where I’m a little confused on this. I don’t want to give up on it too easily because we are talking my next step to be rituxin, but i dont want to waste a lot of time and money on PE if it’s not helping.
I miss the old board with pm’s , search, and e-mails because there were others that had this done. I believe e-mitch had only 14 exchanges total and a few others had it done just one time for 5 exchanges. I was wondering if they too were asked to wait two months at that time. My Dr is pretty insistant that it could take me up to two months to see the results from this??
I like her and trust her opinion usually, but this is not going along with anyone elses experiences Ive read about, nor any site I’ve googled regarding PE. Thanks, i was hoping you would respond—Im normally not one to call my Dr at all between appointments, but I think i will on this. Lori
February 8, 2012 at 6:37 pm
I have relied on PE off and on for the past 15+ years. Have had series of 5 days straight, then weekly for several months, then gradually tapered off to every two weeks, then monthly, etc. until finding the combination that helped me improve and maintain. As you noted, everyone reacts differently to the various treatments and response time varies. Early on, I saw improvement within a couple of weeks. My exchanges have always been followed with an infusion of 500mg solumedrol, which always gives me an immediate “boost” of energy. When I plateaued with the PE treatments, I tried everything you see on this site, plus some of the MS treatment protocals, but when I saw signs of regression, I have always been able to fall back on PE and solumedrol infusions and continue to have success in “maintaining”. I never got back to 100% after the CIDP was diagnosed, because I had a lot of residual from GBS 10 years before CIDP, so I consider being able to maintain to be victory. I would not give up on PE to quickly. Over the past 15 years, I have had well over 300 PE’s (not a typo) and I still maintain a pretty active life, so for me, its been the best treatment. Others have great success with IVIG and prednisone. You may have to search a little to find what works best for you. Good luck
February 10, 2012 at 3:35 am
Lori- I had sent you a message on the old forum (this new one is gonna take some getting used to for me), I have been wondering how it all went?? How was the hospital stay and PE? are you feeling well?? I am hoping that it kicks in and you start really noticing a difference!
February 12, 2012 at 4:08 pm
hmmm.. Im thinking maybe my Dr is ignoring my message in order to have me wait the two months she originally wanted???
I have called and noted that there were some minor sensory changes but no major strength increase from the PE and should we set up another round or move onto rituxin. No answer yet. She could be waiting to hear from Dr Dyck too, she set me up for a second opinion with him back in June, so she still confers with him over my “atypical case”
Another thing I need to take into consideration, is while there having the PE, it was discovered that i was anemic. I started on iron about 3 weeks ago, the day i finished the last exchange. The low iron could be contributing to fatige and weakness and masking some of the PE benefits?
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