SCT… What is the success rate.
AnonymousJuly 14, 2012 at 4:52 pm
My sister was “diagnosed” with CIDP about two years ago and has been receiving IVIG treatments every four weeks. The IVIG infusions have helped in that for three to four weeks she is able to function, but by the time the next treament comes around, he mobility is back to where it was. In other words, no improvements. Earlier this week she received news from her doctor that her nerve ending were not improving/healing. A neurologist from Washington University is being consulted by my sister’s current neurologist in order to come up with a strategy. My question to the members of this group is, if the option to have SCT was put on the table for my sister, should she have such a treatment? Is there a place to find statistics on the success rate and the risks/rewards of SCT in treating CIDP? Is the place in Chicago mentioned by other members here the best place to have SCT? I appreciate any help you all can give. God Bless, John-
AnonymousJuly 15, 2012 at 2:40 am
There is a group on Facebook dedicated to SCT for CIDP. There are quite a few who have gone through the treatment. Alice comes to mind. I would suggest trying to contact her and others who have gone through the treatment. Most of what I have hear has been positive, but I would rather you talk to someone who has gone through it. [SCT stem cell treatment , right?]
July 15, 2012 at 6:58 pm
There are no study results posted yet on ClinicalTrials.gov. The estimated primary completion date is December 2013, so I wouldn’t expect results until some time after that. Here’s a link to a summary of the study:
July 16, 2012 at 1:09 pm
Alice would tell you it cured her
AnonymousJuly 16, 2012 at 7:32 pm
I am 11 months post stem cell transplant and I feel cured. It was so worth it! Before sct, I was on weekly IVIG and scheduled to increase to 2x/week, my last treatment was a year ago. I was on oral chemo, now none. I was on 8 prescriptions for pain management, now I take none. I was in constant pain and debilitating fatigue. Now I still have some pain, but it is low and manageable and continues to decrease. Last summer I could barely walk and used a wheel chair if walking involved more than car to house. This summer I am dancing 2 nights/week. I have so much energy and am working full time and living an active lifestyle again. A little on my story is on facebook, “CIDP and Stem Cell Transplant”. You can “friend” me and I will be happy to speak with you about my experience. This was, without any doubt, the best decision ever!
AnonymousJuly 16, 2012 at 7:38 pm
The overall success rate for this study (per the study nurse) is around 75%. But that includes some early numbers where the protocol was still being perfected. The success rate is climbing but still includes the early lessons. This number also includes all 23 autoimmune diseases that have been treated using the sct. The CIDP study’s success rate number is higher (but don’t know what it is currently). I was #21 in almost 7 years, but now is up near 40 in less than a year as the word gets out and the number of applicants increases. Good luck in your search for answers.
AnonymousJuly 17, 2012 at 8:47 pm
I, too, have recently undergone this procedure. My transplant day was 4/26/2012. My dx date was 12/10/2010. I didn’t want to waste any more time on IVIg or pred to keep this disease in check! I wanted it gone! I feel I have accomplished this goal! I already am feeling “mostly” normal, pre-CIDP and I am no longer feeling any of the symptoms of the disease. I am now working on my recovery from the treatment, which was (for me) not difficult. By recovery, I am referring to stamina and endurance mostly. One is down for quite a while from the CIDP itself prior to the transplant, then there is the chemo (again not too bad for me), but my endurance stunk. It’s improved quite a bit already. I am on the above facebook page Linda mentioned and so is my blog (not completed though). You can friend me also for further information and SUPPORT!! Wendy (Jones Davis) Nash
AnonymousAugust 21, 2012 at 11:42 pm
Dianna – I am not sure about the Anti-Mag w/ MGUS. I think you might want to contact Jon A (write me privately and I’ll give you his full name) from Australia. He had an Anti-Mag variant of CIDP went through a SCT and has had his difficulties.
All I can say is that it has been a miracle for me. I had an extremely aggressive form – they called it “malignant CIDP” – went from doing a marathon to completely wheel chair / bed bound in 5 months. I had the SCT in March of 2010 – and my recovery has been amazing and lasting. I have 100% of my strength back and 99% of my function (can’t quite spread my toes). Functionally – I am all back. I have been left with pain in my feet though which prevents me from walking too far or standing on my feet for too long. Iam living a fairly normal life – except that I have to manage my foot time. Considering where I was at and where I was heading (the ventilator) – SCT has been an absolute miracle.
AnonymousAugust 23, 2012 at 11:09 pm
Hi Jim D: I am going through IVIG now and after 4 months (2 5-day treatments) I don’t see any improvement. I have read about stem cell therapy…I am curious- how did you get into stem cell and was it difficult to get approved? Do you need a history of failing to respond to normal CIDP treatments like IVIG, steroids, etc to get approved? Do insurance cover it? Thanks for the info from you or anyone else reading this post.
AnonymousAugust 24, 2012 at 12:32 am
Hi Jim D.
I was unable to respond by the link to your email address; when convenient send your contact info to firstname.lastname@example.org so we can visit. I have questions.
AnonymousAugust 24, 2012 at 5:30 pm
Hi Linda M:
Could you tell me how you got the referral to stem cell transplant – how did insurance work – did insurance cover the cost? Any more details would be appreciated as I am not getting recovery from IVIG so far and want to know about next possible alternative treatments. Thanks
AnonymousAugust 24, 2012 at 6:23 pm
To the GBS CIDP Foundation:
Why do we not have the most up to date reports, writings etc. for the diseases we suffer. All the information for the most part is fragmented and retrieved from this place and that. Is it not the aim of the foundation to provide us with everything we need to know about the illnesses we suffer that are sisters/variants ect. to GBS/CIDP? The website and informational packet seems to mostly focus on GBS.
I pose a purposeful effort from the foundation and those like-minded to provide this website with a section solely devoted to CIDP and it’s variants. This would require purchasing reports and getting permission to post them. This might also include a place where we can post questions for the docs represented on the board.
Because I have one of the rarest variants to CIDP – Anti MAG Polyneuropathy. I have to educate all my docs less of the diagnosing neurologist. In fact it was my tenacious effort that I finally have a diagnosis. Having said that I think it paramount to have a resource for those of us suffering with these crazy illnesses to get useful and up to date information. And, it would be a great place and resource for all of our docs as well.
Right now my hemoc/onc. is scratching her head as to how to treat me since I don’t show signs of Waldnenstorms, Multiple Myeloma, POEMS, Amyloid or any other lymph/cancerous disease. However, my numbers continue to increase (IGM, m-spike and a couple of others). The research I have to date is that Rituximab (originally thought to be help) is temporary at that. IVIG and prednisone don’t work for the variants; I understand chemo and or another targeted chemo-type drugs might help but my hemoc/onc. is not sure and rather than put me and my body through the harsh chemicals without due diligence she is going to present my case to other hemoc/onc for a round table discussion.
All of that said Anti MAG Polyneuropathy with the MGUS condition is diagnosed one in one-million. And, there is to date not enough noise about such few like us to pursue targeted testing etc. like there is with ALS, MS or one of the other sister conditions. I propose that any help for us will come from research focused on one or all those disease types.
I am willing to volunter to help get things going if the GBS/CIDP Foundation is willing to set aside funds for the project. It would require research, purchasing reports and getting permission to post the reports, expanding the website to include all the pertinent information and scheduling the board of doc’s to go in rotation to be available to respond to our questions.
I have experience in all these area’s as my former profession was an Ad and Marketing Agency owner – before the illness stopped me in my tracks! In my business I developed marketing and advertising strategies for medical, oil and gas, business to the general public etc. Our focus was however, was primarily business to business. In our line up of services we designed and developed web, film, video, all print types, outdoor and promotional.
I’m sure I can speak for all of us here by saying thank you for your consideration and we look forward to hearing from you!
August 24, 2012 at 6:50 pm
dhflower60, the foundation does have an archive of newsletters and other documents containing articles on GBS and CIDP, but lamentably it seems not to have been set aside when the web site software was converted. I wish the foundation would work on bringing those documents back online instead of tinkering with the look and feel of this forum, but they seem to have other priorities.
August 24, 2012 at 7:06 pm
dhflower60 – I would suggest calling The Foundation & speaking with someone there directly. I do not think they monitor the forums anymore. They will probably never read your message – which I agree with 100%. There needs to be more info available to those with GBS/CIDP & their variants.
August 24, 2012 at 8:10 pm
The “not” in my post is a mistake. Too late to edit.
AnonymousAugust 27, 2012 at 6:30 pm
Hi dhflower60: read your entry yesterday, just after finding a blog site from an English guy with CIDP (Not anti-MAG) who compiled a survey form and then analysed responses from 350+ patients. I think I stumbled across this by typing in the question “is anti-MAG different from CIDP?” on Google search. His survey approach may be of interest. I was at first diagnosed broadly with “some auto-immune form of neuropathy” and had five infusions of gamma globulin. Slow deterioration after that, and blood and spinal fluid tests came back pinning it down to anti-Mag. I then had four weekly infusions of Rituxan (last one 3 weeks ago) and am in wait-and-see mode.
Best wishes, Ann79
AnonymousAugust 27, 2012 at 6:30 pm
After I learned about the sct program, I called Paula (Dr. Burt’s head nurse 312.908.0059) and spoke with her regarding how to get into it. She emailed me all the information and application and I went from there. You do not need a referral … not sure if I ever got one. My neuro was against it at first … but after I challenged him to really read on the program, he came around and even ended up calling and speaking with Dr Burt. My neuro is now a big advocate of this program and is trying to get other of his patients into it …
I did not meet the study program’s protocol exactly and ended up going to Chicago for evaluation twice. I was accepted into the program “off-study” on my second try. Basically you must have a diagnosis of CIDP and tried/failed steroids and two other treatments. I do not tolerate steroids, so my trial of them was very short. The other two treatments I tried were IVIG and Immuran (an immunosuppresant) but continued to decline. I had my sct a year ago and this was the best decision I ever made!
My insurance did pay but some do not. I did not try to engage with my insurance (Federal BC/BS) but let Northwestern work through it and my insurance paid everything except my travel and lodging (a lot of the time is spent as an out patient) but there are quite a few that had even that paid by their insurance.
I hope this helps!
AnonymousAugust 28, 2012 at 12:17 am
OK – remember, you asked! LoL!
Before sct, I had numb legs/feet/hands and a few other parts. I had high pain all the time and I do mean HIGH pain and ALL the time . I felt like my arms/legs each weighed a ton and movement was very difficult, it was like gravity was really ramped up and trying to defy it by moving was always a challenge. I felt like the bones in my feet were made of spun glass and each step I took, it felt as if the bones were exploding from within and shards of glass were coming out through my skin. Whenever I rested, I had like full body restless “leg” syndrome with extreme cramping (head to toe, curled up everywhere, neuro said was muscle seizures, not cramps) – they would hit so hard and so fast I couldn’t catch my breath (they would hit my diaphram and I had to concentrate on breathing). They could last for up to 10 min of agonizing pain, then get a short reprieve of a minute or two, then seizures again lasting on and off for hours (the worst attack lasted 10 hours). Since all my muscles seized at the same. I would have instant vomitting and more. I would get zaps and zings and buzzing sensations in my muscles. I had extreme fatigue and took frequent naps but still so fatigued. I was on weekly IVIG treatment (and was about to go twice a week), was on Imuran and 8 RXs for pain mgt. My life was very focused on only a few things which made my world feel pretty small. I had trouble concentrating. Lots of balance issues – fell down all the time, a pebble would cause me to crash to the ground. Was in a wheelchair if I had to walk more than from my house to a car. I was still working but mostly teleworking and that was ALL I could do. Go to work, come home and pass out fully clothed. Wake up around 2 am, clean up, back to bed and then on to work. Fridays working from the infusion center while getting my IVIG. Weekends were lying up in bed trying to gain enough energy to go to work again … horrible and dismal and was getting worse.
It’s been one year since my sct. I’m working full time and some weeks more – I went back to work 6 weeks after getting out of the hospital. I started the first two months back working 6 hour days, then full time. I still have energy left over after work to play with my pets, go to dinner with friends, go dancing, go visiting, have company over … etc. I haven’t had a treatment in over a year. I’m off ALL meds! I can walk and walk and walk (it feels so good!). I exercise 2x/day Mon-Fri.
I still have nerve damage and always will have some as there was so much … so I’m still numb in spots but that is improving. That is an area I expect to get good recovery but nerves are slow to grow/heal (1 mm/day), so this can continue for years. I do have more feeling in my legs and arms. I still can trip over a stupid pebble (took a tumble in my driveway today – sigh) but that’s on me for not watching where I step – anyone with numb feet for whatever reason knows better! But I’m feeling so good, I just get careless. I’ve always been high energy and that hasn’t fully returned but I’m 8 years older from when my cipd journey began, so that is probably a contributing factor! But I have a very acceptable level of energy and can be very active pretty much as I want as long as I get 8 hours of sleep each night (used to only need 6). I still have cramping, but it is cramping and not seizures and there is a BIG difference! So, while I do consider myself cured of the CIDP, I am not completely healed from the damage it did.
However, this is a lot of progress for 1 year and I have to keep going back to be tested annually for five years. And since they continue to see results for several years from other sct patients, I believe I will continue to improve.
This was the best decision I made.
But all in all – soooooooooooooooooooooooooo worth it! I’m enjoying so much more now
AnonymousAugust 28, 2012 at 2:43 pm
Thanks for that great story of recovery. So glad you found something that worked for you. I am only about 1 year into my CIPD journey and have mostly the “heavy leg” syndrome, can’t walk very far, fatigue very easily and trip over anything 1/4″ high on the ground (mostly on my left drop foot side). I get what I call “electroshock” pains in my legs, ankles, bottom of feet that can happen every 30 seconds for 1 hour up to 18 hours in a row. Vicodin seems to help the bad days but I know this is just covering up the problem. I want it cured or at the least very minimal in my life so I can feel “normal.” I think I am better than most but after 2 loading doses of 50g for 5 days I have not seen much improvement in my symptoms. I am scheduled for 6 sessions of 50g for 5 days every 8 weeks and then my neuro will see how IVIG is working. Its nice to know and hear about success stories of stem cell transplant – gives me possible hope for others as a treatment if IVIG, etc doesn’t work.
Could I ask you the length and complications of your sct treatment…how was the chemo part I read about in the treatment? Did your insurance cover it?
Thanks again for your info to my numerous questions.
AnonymousAugust 29, 2012 at 7:31 pm
I am happy to answer any and all questions. I was so fortunate to be guided through by a couple of patients that went through the sct prior to me that I want to help “pay it forward”.
When I was first diagnosed (it went undiagnosed for several years), I responded quite well to the IVIG … was still dancing several nights a week, working, gardening, etc. But that lasted only about a year then it just wasn’t enough and I started needing the IVIG more and more frequently with less results. The most I got out of IVIG was energy and I was still losing ground there also.
I went to Chicago to start the pre-testing, follow-up testing, mobilization, etc on July 11 last summer. It just depends on what your particular circumstances are as to how many tests you go through prior to the transplant, but the first several weeks are as an outpatient. I could have left Chicago twice during that time but chose to stay as my daughter was with me – she came home from Tanzania to be with me and I decided Chicago summer beats Houston summer any day and so we stayed and did some tourist things. So during that first month, in between tests and procedures, we went to museums, the Navy Pier and enjoyed Chicago. I also was very fortunate that there were a record number of us going through this at the same time (10 total – 4 with CDIP, 4 with MS, 1 with Lupus and 1 with Crohn’s) and we were staying at the same hotel, so became friends and each other’s cheering squad! A lot of my social time was spent with fellow sct patients and that made it even easier as we really understood and accepted each other!
I went into the hospital for the actual transplant on Aug 16 and was released on Sep 2nd for a total stay of 18 days. Some get out later or earlier, depending on your blood counts. The chemo is what puts into remission the CIDP by killing off your faulty immune system and your own stem cells are used to rescue your immune system, so you aren’t released until your blood counts come up to an acceptable level. The one that stayed in the hospital the longest out of our group is a lady that had Lupus. She was on dialysis when she entered the hospital but was completely off before being released (much to everyone’s delight as no one expected that much recovery in that short of a time!!!!). She was in for 20 days.
The chemo was not bad for me. Since this is not for cancer, you get a pretreatment that coats and protects all your organs each time prior to the chemo. The program is also very generous with the meds to make you as comfortable as possible, so while I didn’t feel great, I also didn’t feel bad. My worse day of sct treatment was still better than many, many days of being sick from the CIDP. And yes, my insurance covered it. Also, this only lasted a short amount of time in the bigger scheme of things, so that also made it easier to accept – there was a light at the end of the tunnel and it wasn’t the train! LoL!
I hope you get great results from the IVIG as that is the best case scenario …
Wishing you (and everyone) the treatment that works for your circumstances,
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