to all who have had stem cell transplants
I am interested in knowing from those who have undergone SCT how you are faring. Specifically, could you answer the following questions: What was the nature/severity of your CIDP; i.e., sensory, motor or both? Remitting/relapsing or steady progression? Were all of your limbs affected and to what extent? Were you walking unassisted? with cane? afo’s? or not walking? How long were you symptomatic before your SCT?
When was your transplant done? Have you experienced improvement? If so, in what ways specifically? Do you anticipate further improvement? If you have not experienced improvement, how is your CIDP being treated currently? Have you had any health problems since the transplant (related to CIDP or not) If you were working prior to your transplant, have you returned to work? Finally, have you noticed any changes in your body, not related to SCT, since the procedure?
Since I asked the question, I’ll start out:
I had the steady progressive type of CIDP, with the first symptoms appearing in March 2008. I had numbness in the bottoms of both feet, which then crept up my legs, but never getting as far as my knees. Six months later, I began to have balance problems; six months after that I had problems walking because of drop foot and sought a neurologist. I was dxed in July 2009 and started on IVig (didn’t work) and then massive doses of prednisone which did work, but only to the extent that it stopped the disease, but did not reverse it. In November 2009 (while still on IVig and before prednisone) I began to have numbness in both hands– more in the left than in the right. Also, my left hand would go into Parkinsonian-like tremors from time to time. I started prednisone in January 2010 and added cellcept in April 2010 in an effort to get off the prednisone. Cellcept did nothing for me, but I stayed on it for 4 months, because, in order to qualify for the SCT you had to have failed 3 treatment protocols.
I had my stemcell transplant done on 9/16. I am noticing very gradual but steady improvement. I often have to compare specific events in the past with a current similar situation to be aware of progress — e.g.; pre-transplant I could walk unassisted outside for very short distances, but needed to be near something to hold on to in case of tripping or losing my balance. I don’t need to worry too much about that anymore, and am going many places without my afo’s — but wearing these weird shoes that turn up at the toe and the heel to avoid catching my toe on pavement. I still have drop foot, but I notice that the afffected ankle seems stronger –doesn’t feel quite so much like a broken hinge.
Also, I am finally off the prednisone but have not returned to work. I am officially on disability through March 31. I am taking “anti” medication for the next few months — viral, fungal and bacterial. I developed a terrible rash while taking the anti-bacterial (Bactrim), so I was put on Pentamidine (spelling?) a nebulized inhalant that I take once a month.
Since the SCT, my skin has gotten extraordinarily dry, and it’s not just the weather. I have a chronic case of chapped lips, and I have to oil myself down everyday, just to avoid a case of full-body dandruff! I used to suffer from constipation — possibly IBS, but i no longer have that problem. I was addicted to coffee and smoked maybe 4-5 cigarettes a day. I have lost the taste for coffee and drink tea instead. I quit smoking in the hospital and have not had a cigarette since then. I won’t say I don’t pine for a smoke now and then…but I don’t seem to crave tobacco as much as I did pre-SCT.
There are at least 2 people who post regularly on this forum who have undergone SCT. I hope to hear how you are faring. I do believe your experiences will be beneficial — or at least interesting — to us “transplantees” as well others who may be considering the procedure.
PS I forgot to mention that my energy has returned since the SCT. I am still not at 100%, but I’m getting there.