I'm the women Sandi is talking about -- I had a stem cell transplant for lupus, ITP, APS and vasculitis, so it well beyond ITP alone, although there are transplant patients who have ITP as their only autoimmune disease.
As Sandi mentioned, it can result in serious complications, some very unexpected, even by the transplant doctor who pioneered the procedure.
I had my transplant at Northwestern hospital in Chicago, by the doctor who performed the very first procedure for a lupus patient, with severe lung involvement. She is in remission still and her transplant was in 1998.
My transplant was an autologous transplant (my own stem cells). They harvest the cells, zap your immune system, hoping to "reboot" it and eliminate the memory cells responsible for producing the autoantibodies. The stem cells are not the treatment, it's the high doses of a combination of chemo drugs. The stem cells are for rescuing you from the brink of death. After the chemo drugs, you're left with no immune system, no platelets, and very low red blood cells, so you are sustained on transfusions, until your bone marrow starts making cells. I was sustained on transfusions for almost 3 weeks, began having reactions to the multiple transfusions of platelets, until finally I could sustain over 10,000 platelets. That was while still receiving high doses of prednisone, as I did not respond to the transplant quickly. In fact, it took me a year to get a count of 100. I had begun to think it was a failure at about 9 months and I was still only at 30-40k platelets, with 30mg of prednisone. Apparently I had a great deal of circulating autoantibodies and even all the chemo drugs do not eliminate the circulating autoantibodes. I had no idea if I had a failed transplant, or I had an abundance of circulating autoantibodies and the months of waiting are extremely frustrating.
The most severe post transplant complication I had was Ebstein Barr Virus, which reemerged post transplant. When this happens without an immune system, it develops into post transplant lymphoma and 80% of transplant patients who get this, don't survive. I count myself extremely lucky, since I had a severe case of lymphoma, which destroyed my stomach, my kidneys shut down and I had viral menigitis and was intubated for several days. The treatment for lymphoma is rituxan, but I had a reaction to rituxam when I had it for my autoimmune disease. There was no choice but to use it, or die not using it, so my husband had to make the choice to treat the lymphoma with rituxan. Thankfully it worked and they were able to manage any reaction with a combination of drugs and since I was intubated, they could control my breathing, heart rate, etc.
I spent months in the hospital, weeks in inpatient rehab and months in out patient rehab. It was a long journey, but I am in remission and have been for 3 years. I had the procedure in April of 2007, taking one year to get a normal platelet count.
I choose transplant not because of ITP, which was severely refractory and I did not respond to any treatment I had, unless I took 50-60mg of prednisone a day to get my counts up to 50k. I also had APS and clotted often, even with counts at 10-20k, even on blood thinners I would clot. I had multiple DVT's PE's and 2 strokes. I also had vasculitis and began having kidney involvement with repeated protein spills.
I'm not clotting anymore, APS is negative, no vasculitis and platelets are 200k, so it was a success so far. There are no gaurentees, as I still have symptoms of autoimmune disease, I still take 10mg of prednisone, I have skin rashes and suffer from hives and itching. I have joint pain and fatigue, suffer from fibromyalgia, more severe now then prior to transplant. I don't know if transplant contributed to the increase in fibromyalgia pain, due to the clots I've had I have pretty severe neuropathy in my legs and feet, so it might all be connected with all the damage done to my body from the repeated blood clots.
There are other risks and the EBV was a huge surprise to the doctor, in all the patients he has performed the procedure and others across the country, EBV reactivating has never happened, so they didn't even know what was going on when I presented with the symptoms I had. It took them a week to figure out I had a virus and then they thought it was CMV, yet I tested negative to that, so finally they figured out it was reactivated EBV. As far as I know, this has not happened again, but there are other risks of suppressing the immune system to the degree they do for the procedure. There are long term risks too, of secondary cancers, so it's not a treatment to be taken lightly.
With any treatment, the success rate is limited -- when I had mine they gave me a 50% success rate, with no garentee that if I experienced a remission, it would last, if it did, they have no idea how long, as each patient is different and as with any treatment for autoimmune disease, you just don't know.
If you would like a copy of the clinical trial write up and other information I received in 2007, I'd be happy to email it to you. I'm pretty sure I still have it. If you want the name and number of the doctor at Northwester, I can provide you with that too and the clinical nurse in charge of patients. She would be able to help you decide, help determine if you would qualify and explain everything to you.
It's not cheap and generally most insurance companies will not cover it. I was lucky to have an extremely good insurance policy. They approved the treatment, but then tried to refuse it when I had the major complications, which ended up costing them way more then they expected it to cost. My bills probably ran 1 million or more and generally the cost of transplant is about 150,000 - 200,000. While I was on the ventilator they pulled coverage and my husband had to deal with that too. It was a nightmare for my family. We had to get an attorney, who specializes in insurance law and it took us 3 years to get it all paid. It was a nightmare to deal with this on top of trying to get well. If not for this amazing attorney, from Advocacy for Patients, who helps patients with chronic illness and does it for free, we would have lost everything.
Would I do it again -- No, not with knowing all we went through, although my husband says he would, because he has his wife home, more then in the hospital and he's not rushing me to the emergency room 10-20 times a year with another blood clot or a GI bleed. Prior to transplant I had to have blood thinners, or I would just keep clotting, but with platelets that would not respond to treatment, I had chronic GI bleeds, so I was sustained on iron and blood transfusions, with severe anemia almost all the time. I have an enlarged heart, bad lungs and other problems from the chronic anemia and the blood clots in my lungs have caused pulmonary hypertension, although now it's stable and has not increased and prior to transplant it kept increasing and I was nearing the need for oxygen treatments. So, I guess I can see why my husband says he'd do it again and I guess I'd consider it. It's so hard to say yes or no in retrospect, but I think because my husband is in the medical field and is a little better emotionally equipped to manage the hospital environment and doctors, it might make it a little easier on him. I was and still am completely fed up with medical procedures, hospitals, labs, and doctors, I don't think I'd have the ability to go through it ever again, nor do I think I could manage coming out of remission and feel I'd probably sink into a depression. I'm finally feeling a bit past the fearful "I'm going to come out of remission" stage and I'm not thinking about it daily anymore, so I guess I'll get to the point I can go several days, or maybe even weeks without thinking about coming out of remission. With each passing month, it gets better.
Hope that helps. If there's any more questions you have, let me know. I also have a carepage I kept during transplant, which is still active and you are free to read through my posts there, for a day by day descriptions of what went on.
Kim
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