I wish I didn’t need infusions every 10 days also. Don’t we all?
When I asked my neurologist about SCT: she said “The benefits outweigh the risks”. This is her opinion. She specializes in neuromuscular conditions. She has never heard of Dr. Burt’s clinical study SCT in CIDP. I don’t know what to think. I wish I could eradicate the disease from my body.
I believe that stem cell transplantation will be the standard treatment/cure for CIDP as well as a host of other autoimmune diseases, when the studies are concluded and the data is in. Right now, stem cell transplantation is still in the clinical trial phase, and that means that, to prove its efficacy over other, standard, treatments, one must run the gauntlet of currently accepted protocols and fail each one.
I understand that Dr. Burt is soon going to publish his findings on SCT for CIDP patients. Given the huge success of this protocol, Dr. Burt’s publication should go a long way toward persuading the medical community to accept SCT as the treatment of choice.
All I can say is it’s the **** and how much can you take? I crossed my line
and will roll the dice but it is not without talking to 5 to 7 others who have gone before me. Nobody has died in the CIDP program and I hope to not be the first but if I do what can I say? I’m not here anymore. It’s killing all of me now as it stands.
I have had over 100 plasma exchange treatments and what the CIDP don’t take the treatment does for what’s left as my legs turn to jello but I get to use my arms a little. Screw it, that’s the best I got so the SCT seems like it can’t be any worse as there is potential for daylight.
I believe that the SCT can put the attack by CIDP into remission, just like Emily’s Mom said. But if there is damage to the core of the nerve, the axon, that will not come back. Alice & I have talked about the difference between her treatment & the cytoxan infusions I received back in 2003 which put my CIDP into remission. We both believe that it was the CYTOXAN that stops the CIDP, only it is probably safer to be in a controlled environment than to have the infusions like I did & be living at home. But Emily, Randy B, Ryan & I all had just the chemo infusions, all with good results.
I did not get all of the feeling back below the knees, only partial. I still need to wear AFOs to walk. My hands are not 100%, but I can do everything I need to do with them, just don’t ask me to write a lengthy letter longhand! But I was strictly in a power chair with virtually no use of my hands when I decided to try the cytoxan protocol, am very happy I did. At this point in time, I don’t believe there is anything to rejuvenate destroyed axons in the nerves. Hopefully in the future there will be.
thank you for the many great responses. I am not afraid of the procedure and have pretty good insurance which i THINK may cover. Just wondering how bad my symptoms have to be for me to be considered for the procedure. This is a very different lifestyle than i was used to pre-cidp…but my symptoms are not as bad as a lot i read about. Given that i didnt know if i would be considered a candidate. I would LOVE to ski again, go running, go hiking, travel and be able to do the activities i enjoy..so therefore i myself would do the procedure in a heartbeat.. But, if there’s a lot of loopholes as far as other treatments etc.. im not so sure ive met the criteria. I’ve only tried prednisone and am currently doing ivig. Because of the slow progression and it not being completely disabling I feel I am being treated very conservatively—which , yes im seeing a very small improvement….but meanwhile i feel as though my life has been on hold for 3 years now..and passing me by, I’m 46 there’s many things i want to do and i dont want to wait forever for this ivig–(every 12 wks for 1 yr and now just starting every 6 weeks )to start working. I would rather not waste more of my life and just go straight to the sct and be cured not just treated. Sounds like you have all had good response from the sct and nobody has written that they did not improve with it. thanks for the info ( and for listening to me whine about this crappy disease–lol) Lori
Linda, good luck to you! I hope you receive a favorable response from Dr. Burt. If you have any questions/concerns about the treatment, what to expect, how you might feel (I had NO nausea with the chemo), please feel free to PM me.
Let me know how it goes with Dr. Burt.
I am so, so, so happy to hear you are doing better. I’m through the first hoop – my application’s been reviewed and I go for evaluation with Dr. Burt mid-Jan. I never thought I would be looking forward to going bald and being chemo sick so much! But I am as I KNOW that part is temporary, but the rest of my life without CIDP is so, so, so worth it!
I can’t wait! But I also don’t want to get my hopes too far up in case they find I’m not a viable candidate.
Please keep us posted as to your recovery.
Thank you and thanks to all that went before you to give the rest of us hope.
Alice & I have talked about this, both agreeing that the main difference between the high dose cytoxan infusions I had ($800 per infusions per month at my local hospital) & her SCT at Northwestern in Chicago, is the time element. I had to have 5 loading doses in 8 days & then once a month until my white cell count was down around zero, meaning my immune system could reboot. Her precedure was done in like 16-18 days; same results, mine much cheaper & more convenient. But it is the Ctoxan that arrests the CIDP, not having a stem cell transplant. Look at Ryan’s latest post, he is back at college & even deer huntin after being total care in a power chair for over a year.
I used to think that this treatments I had should only be for the worst of the worst cases, now I wonder why more people with CIDP don’t undergo these infusions. Whys stay on IVIG for the rest of your life if one can be treatment free, I am excepting children though at this point…
i havent done much research on sct—i figured it was last resort after everything else had been tried and failed. So is that a major thing to go through? is is definite to rid one of cidp symptoms? guess i’ll need to do a little research on it. thanks for sharing your experiences : ) i am feeling better since my ivig—but am waiting patiently for it to help with strength in my feet.
If you have/had a true case of GBS, then no, this treatment would not work for you. The “C” in CIDP stands for chronic, meaning the bad antibodies are constantly attacking the nerves. Treatments such as IVIG, solumedrol & PE will tempoarily halt the progrssion of the disease, but if left untreated, they will continue to do damage. This treatment is designed to stop the progression of CIDP, not GBS. GBS should stop on its own…