stem cell/bone marrow transplant

Alice just had it done as part of a study. I believe she tolerated it well and is doing good. There was a guy at the last symposium had it done too.

The guy who did it was perfecty normal. the two or three neuro’s in the room really emphasized that it is extremely dangerous and would not advise it as a normal treatment regime. the man knew this, and seemed pretty pointed as to saying that he didn’t understand why it isn’t more accepted.

My stance on it is that if nothing else works and the patient is willing to accept the risks, they should allow it or accept it as a treatment option.

The overall costs has to be less than years and years of IVIG. Some don’t want to take those risks though. Alot of factors would go into that baby.
Maybe someday after multiple studies have been done like the one Alice participated in are completed proving its effectiveness, it will becomre more mainsteam.–tim–

While I’m no doctor, here are my thoughts on why it’s not used more widely. I base these thoughts on experiences I’ve had with others I’ve known who had to have bone marrow transplants for other reasons.

[B]Lack of Donors[/B]: The percentage of people that are listed, typed marrow donors is but a small fraction of the number of blood donors out there. Becoming a donor isn’t easy…it’s a painful procedure where they stick a large bore needle into your femur or hip to extract some marrow for typing. Hurts for up to a week afterwards. In Utah, it’s not free, either. I checked into becoming a donor a couple of years ago, and was told it would cost me about $100, none of which my insurance would cover. Because of the pain and the cost, I would bet a lot of people aren’t willing to become donors until it effects them personally, like a friend or relative needing a donor. I was told to check back with them regularly, because sometimes people donate funds to cover typing of a certain number of people…they may donate say, $10,000, and specify it to be used for marrow donation typing only.

[B]Cost[/B]: The people I’ve known who had to have BM Transplants have said the procedure cost between $300-$500k. Too often, insurance won’t cover any or all of it; that’s why you see so many little “collection jars” everywhere for people battling cancer, leukemia, etc.

[B]Risk[/B]: There is some risk to the donor; risks of infection, etc. But, for the recipient, it is my understanding that to prepare you for receipt of the donated marrow, they have to COMPLETELY destroy your immune system. If you’re already in a weakened state, this could be lethal. A good friend of mine just died last week; he had been treated for Rheumatoid Arthritis (RA), with Immunosuppressants, and contracted a bacterial lung infection. Because of his weakened immune state, he had to be hospitalized; while in the hospital, he contracted/developed a MERSA infection. Could not recover; died within 7 weeks of it all starting. He was only 60 years old, and in fair health before all of that.

So, there are benefits, but the risks can’t just be shrugged off. Especially in the litigious society we live in…doctors are gonna make sure their butts are protected. 🙁

And, again, this is only about BM transplants; I don’t know what the implications are for stem cell procedures. Your title listed both.

Elmo

Non-Donor Stem Cell Transplants, as used for autoimmune diseases are NOT high risk, because they are NON DONOR “transplants.” The patient’s own stem cells are harvested and re-infused after a non-myeloablative (bone marrow-sparing) chemotherapy conditioning. Non donor transplants are done often for lymphoma patients who have recurring disease after initial treatment.

Non-donor transplants do not require as intense a conditioning, have no risk of graft-versus-host issues, and the patient does not need to take immuno-suppressives for life, afterward, as is the case for a donor, or Allogenic transplant.

Personally, I would do it in a heart beat if a center in my immediate area offered the treatment for CIDP, covered by insurance.

In my opinion, it makes perfect sense as a treatment for CIDP that is severe, and refractory to first-line treatments.

I look at my future of 6 infusion a month costing currently $ 35,000.00. It was $ 60,000.00 a month till recently.
Think Alice paid $ 100,000.00 in the USA for her stem cell transplant.
Makes sense. Pay $ 400,000.00 a year for IVIG or 1/4 that to maybe be cured or at least have the disease halted without needing further treatment???
I know I’d not recover fully what the CIDP destroyed but to be free from infusions-to travel-to maybe gain some of my physical abilities/stamina back. That’s a dream for me….

Let’s all hope the research into demyelinating diseases will in 10 years come up with some new alternate treatment options.

Because SCT is still in the first stage of clinical trial, there is the very real issue of insurance paying for this. It’s a 300K procedure…self payers I believe are charged 125k. So cost is one reason more people don’t avail themselves of the treatment.

Secondly, in the US it is only available at Northwestern Memorial Hospital in Chicago. One is required to fly out there for an evaluation, involving a three day stay and 6k worth of testing. If selected, count on you and your caregiver being in Chicago for at least 2 months. Hotels are very pricey in Chicago; meanwhile you are still making rent or mortgage payments on your home (there’s that cost issue again).

Third, the screening process is fairly rigorous…the number of participants was recently bumped up from 20 to 40 over (I think) a six year period. Even so, I myself know of 2 people who were invited for an eval but were not selected. In both cases there was not sufficient clear-cut evidence of CIDP, and/or there was suspicion of other exacerbating disease mechanisms at work. Don’t forget that CIDP is often very difficult to diagnose, though both of these individuals had been dxed by their neuros as having CIDP.

Finally, let me say that no complex procedure such as a stem cell transplant is without risk. But I, for one, never felt that it was “risky” if you understand the difference. The level of care and involvement of the Burt team and that of the hospital staff was incomparable.

Sharon

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…
Pam

Pam
I am on cytoxan but just 3 grams every 21 days. I am still detiorationg rapidly and the doctors have now cut my plasma exchange down to one every 3 weeks as well to give my body a rest.
Since I have not had an exchange in two weeks now the swallowing issues have returned as well as some other new delights, the newest is the lack of bladder control.
Was there a study, is there material available on doing a 5 day chemo blast that I can discuss with my neuroligist. I am using a walker now, was just on canes, severe face drop on my right side, combined with the numbness in my lips and mouth, and now throat.
I have had 3 cytoxan treatments, lost a ton of hair, the nausea I have under control, but they will not look at anything else until 30 days after my last run in march. Hands,feet,chest,face,throat,now bladder. How or what does one do to get them to try something more radical?
If at this point I end up with respiratory problems or with any other major issues I am not a top candidate to get through it. Any info will help.

Thank you

[FONT=”Microsoft Sans Serif”]billt and pam, thanks for your clarity here– saves me having to type…
i’ll just add– it simply wasn’t any big deal… seriously.
shame doctors give erroneous opinions on the matter.
non docs too..
alice

p.s. i didn’t even contract a cold during or since…
dangerous = living with cidp and abusing one’s body year after year with the crap they offer now.
also, it is no longer “phase 1” — it has moved into phase 2 now.[/FONT]

I think that the value of the transplant is that stem cells have an opportunity to grow into normal immune cells in an environment now made pristine by the destruction — through cytoxan — of the immune system. I am not sure that happens with just the cytoxan treatment. Chemotherapy is given prior to the harvesting of stem cells, presumably to reduce the chance of corruption of stem cells with the factors which cause CIDP.

Sharon

‘other’ problems make it too dangerous. But, I’m sure hoping that it mite become a normal protocol for soo many others in the future. And for [I][U]those[/U][/I] who view ‘stem cell’ research an abomination? Well, FUDGE! The cells are MINE, after all. And after all, similar procedures w/leukemia are OK to do this with I believe, and some other cancers.
I’m viewing it this way thru an analogy: IVIG is essentiallly ‘pasteurized processed’ blood product- from others; This stem cell protocol is essentially ‘pasteurized processed’ and multiplied- by a ME product. It’s a no-brainer in my H.O.! To those who can’t ‘get it all’? I truly wonder if they can even FIND the noses on their faces.
Lastly, those cost-benefit #’s are exactly the sort crunched by insurance companies over the decades… UNTIL they were forced to provide coverage either by law or public demand. Again, it’s a high cost now, in the experimental stage-for now, but those costs per person can decrease w/increased #’s participating and more key medical facilities participating.
Given the overall long-term costs between IVIG and/or Stem Cell? Again! It’s a no-brainer in that overall lifetime cost..Those dollar pinching insurance guys WILL wake up and see their profits for the long run!
Good luck and good heart to one and all!

I agree, Stem cell harvesting may be a protocol for the future, but I beg to differ regarding cost effectiveness. Getting to the point that the stem cells are clear of autoantibodies can cause longterm affects later down the road (dangers of the chemo drugs, and other drugs) I realize that some, maybe even us, eventually will have no other choices, but I really don’t think cost effectiveness should be a motivator. The problems that follow the chemo will be far more costly than ivig. Again we are faced with risks outweighing the benefits. I must confess I am truly tired of having to weigh risks and benefits. This whole autoimmune thing is really getting me beyond mad!! We are having some testing done, we may be facing another illness, thyroid antibodies have already tested positive, so that too will be another problem sometime down the road. I see the writing on the wall, it is not what I want to see.

I have to agree with alice that SCT is not that big of a deal, in the sense of side effects or being sick because of chemo. Everybody is different and reacts differently to the treatment. But after being on ivig ,cellcept ,prednisone and pheresis for 14 yrs . SCT is the best thing that could have happen to me.
Cost??? I can tell you all about that. Just do the math. 14 yrs ivig every 2 weeks, cellcept (expensive med), pheresis (expensive) SCT was nothing compared to that.
I m sorry for those that didnt qualify, I hope some day would be available to everybody.

Rossana

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.

Sharon

PS I forgot to mention that my energy has returned since the SCT. I am still not at 100%, but I’m getting there.

[QUOTE=Anastasia52]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.

Sharon

PS I forgot to mention that my energy has returned since the SCT. I am still not at 100%, but I’m getting there.[/QUOTE]

That is an excellent post—very informative : ) thank you Lori

[FONT=”Microsoft Sans Serif”]hey sharon–
okay, my turn :rolleyes:

i think you and i have a very similar story. ivig didn’t work for me either and like you, prednisone did, but at the ugly cost of prednisone… i too needed another “traditional treatment” under my belt in order to be eligible for the transplant and in my case i tried cyclosporine, also for 4-5 months– it did nothing for me except make me weaker and sick feeling.

[U][I]the basic timeline for my road with cidp:[/I][/U]
[B]dec 2007:[/B] 1st symptoms, numb toes.
[B]feb 2008:[/B] diagnosis: cidp
[B]june 2008:[/B] (so 6 months later) — numbness was now up to my hips and shoulders, had autonomic involvement (difficulty holding my urine and other, difficulty swallowing and breathing) complete foot drop and near paralysis– unable to turn myself over in bed, could not walk at all, etc.. funs stuff..
[B]july 2008:[/B] tried ivig– zero efficacy. then began 60 mg prednisone daily and it did work.
[B]oct 2008:[/B] added cyclosporine and reduced prednisone, began sliding backwards..
[B]sep/oct 2009:[/B] had my stem cell transplant at northwestern and immediately began improving!

so, at this writing, it has been a year and a month since i did my transplant. i knew right away that the disease process had stopped after the treatment and I have steadily improved in all ways since. i made folks grumpy on the forum several months back when i posted that i was cured– i still maintain that i am indeed cured… i have no numbness anymore, most of my reflexes have returned, my pain is gone, i walk like i did prior to cidp and still, i continue to heal from the ravishes of the disease… since the transplant, i have been medicine free!

as far as effects from the treatment itself– well, at this point, all systems seem normal. meaning, my blood counts are all back to normal, my skin is no longer dry (yes i had that too, its from the chemo), i simply feel great, i feel normal, like i did before i got sick.

undoubtedly, i have more healing to do– they say you go on healing for approximately 2 years and i’m counting on it. the part i am most anxiously waiting for is my ankles to regain their spring. i still run like a dork:o i had serious damage in that area (ankles), including axonal damage, so it is taking much longer to repair but i have not at all lost hope. the doctors at northwestern feel i will have a full recovery and so do i– it just takes a really, painfully long time………

i’m returning to work in february. i probably could have gone back to work sooner if i had a less physical job (i’m a cop).

oh, by the way sharon, i also quit smoking since being hospitalized.. i tell people who are trying to quit to have a SCT, it worked for me 😉

i think that’s about it– it isn’t easy to encapsulate in writing such a drawn out period of time. but i do hope it helps to share our stories for those looking for hope where once there was little. i am in touch with about half of the people that have gone through the transplant and everyone is doing great! some of those people had the transplant much before me and they have returned to their lives, medicine free and absent of cidp (chronic irritating depressing poop). i continue to keep my website up and running and field between 1-2 emails per week from people from all over, including other countries, interested in the transplant. i talk to many of them on the phone or over skype– answering their questions and calming their fears. many of them have gone to chicago to be evaluated for SCT and some have even had transplants since mine. my website is [url]www.alicedicroce.com[/url]

cheers!:)

p.s. oh yeah, i also lost the taste for some unhealthy cravings after the transplant– it made becoming healthier easier.

[/FONT]

Thanks, Alice. There are some interesting parallels in our two post-SCT courses.

While lying in the hospital I realized that if I was going to go through all of this to regain my health, why on earth would I take up cigarettes again. It almost seemed like an act of ingratitude to deliberately poison my body with tobacco.

How long did it take for your skin to return to normal?

Thanks for posting, Alice.

C’mon, let’s hear from the rest of you!

Sharon

[FONT=”Microsoft Sans Serif”]the dry skin thing is temporary! i had it, jim had it and i remember rhonda telling me that ryan had it from his chemo– the scalp too… i used oils and lotions from head to toe for those dry months. how long did it last huh? let me think– i guess my skin returned to normal around 4 months(ish) post transplant. of course i ate well and made sure to consume plenty of essential fatty acids and a generally heathy, in my case vegetarian, diet…

perhaps you noticed that your nails were effected too? mine had a line that grew out that indicated when i received my chemo. jim too. they say that the fastest growing cells are effected most by chemo– that’s why hair falls out (hair follicles die off).

and yes, after getting sick as we had, smoking no longer made sense. you put it well when describing it as an “ingratitude.” but i have to admit, i sure do miss it sometimes… sigh… for me, other than smoking, i had lived pretty healthily, in terms of my habits. there was room for improvement, but certainly better than most– in my case i had planned to use the hospital time as a catalyst for quitting, since they didn’t offer smoking rooms on the ward…

one thing i forgot to mention was that the chemo did seem to shutdown my ovaries, hence a slightly early menopause. nothing a few bio-identical hormones couldn’t fix right up. besides, the only babies i “do” are of the K9 variety and my ovaries aren’t needed for that:o

peace–[/FONT]

i found your posts so interesting. i was diagnosed april 12 2010 and although i am steadily progressing, my patience is running out.
i was completely paralyzed and i walk now with afo’s. apparently the ivig is working for me and my nuero won’t try anything else until nothing works. of course that makes sense but i want it gone as fast as it came.

i am so fearful of a relapse because i honestly can’t see myself going through what i went through again. a complete nightmare.
i go see my nuero in two weeks and i am going to mention this to him.
thanks for sharing for your stories.

blessings
michelle

[FONT=”Microsoft Sans Serif”][B]beware of negativity from your neuro![/B]
just say’in… i went for treatment [I]without[/I] the blessing of my former neuro, he didn’t even understand the treatment and was against it. and, i printed out the treatment protocol for him to read (apparently he didn’t bother).
a common mistake by neuros out there is to assume the treatment to be myeloablative, it is not. and so on…
just be ready to make your decision, perhaps without his/her good wishes.

no matter your decision michelle, i wish you the best.

best of luck–
alice[/FONT]

i was thinking a lot about this last night. did anyone mention what the percentages of relapse or any side effects or something negative that might come along with the procedure? i guess it’s hard to believe that it is the cure all. i want to believe but the evil experiences that we have all gone through jsut scares the crap out of me because i just can’t go through it again. i want this gone and never to return.
thanks again for sharing your experience. i went to your blogspt and couldn’t believe how similar our experiences were.
michelle

[FONT=”Microsoft Sans Serif”]well, they have done 15 cidp thus far but many, many multiple sclerosis and other autoimmune disorders from RA, scleroderma, lupus, diabetes 1, etc…

they have done well over 300 now total. the mortality rate is less than 1% and if you listen to how and why these 2 people died early on in the trial, the percentage should be even lower now– one person died because they dropped out midstream treatment and did not continue to follow up after their immune system had been weakened(!) and number two died from an infection from an already existent fungal ball in their sinus tract. since that latter death, they do a ct scan of the sinus region looking for such a condition prior to depleting the immune system.

as far as relapse is concerned– it would be more accurate to call and ask them– they will tell you– but, i can tell you this: as far as the cidp folks, no one has relapsed and the 1st one to go through the treatment was jennifer o. i have spoken to her and she is so far beyond cidp… she lives a full life with her husband and children. she is till enjoying the cure this treatment has given her– some 5 years later…? there are apparently two folks done very early on just after jennifer that had “less” improvement than all the rest of us– and the doctors believe that at least two factors are to blame for this: one person had had the disease for numerous years and the other was very up in age. i don’t know anything more specific than that. i know they were very early on and that dr. burt and his staff have better honed in on what meds and how much are used.

regarding the MS folks, the trial’s largest group, they have a success rate that is staggering! again, some of they’re choices in subjects early on have undoubtedly thrown off their overall statistics– for example, they used to accept both progressive and relapse-remitting forms of MS. eventually, it became clear to them that only one form of MS is treatable by transplant (right now i can’t recall which one). as a result, all who underwent transplant that were in the non-treatable category threw off the overall stats, not to mention what a bummer it was for them… BUT, even with those people factored in, i believe their, they call it “sustained remission,” rate is in the high 70-% range! and what is important about looking at the MS folks is the fact that they have done so many more than for cidp– simply because there are so many more of them than us…

i hope that answers some of your questions michelle. like i said, you can ask the very pointed and specific questions directly to them, they don’t mind answering them as they appreciate the fact that choosing to be treated is quite a big deal. so if my answers felt too vague, do redirect them to paula gozdziak, the nurse coordinator for cidp. she is very nice and easy to converse with.

as far as side effects goes– they are mostly pretty time-limited. all the stuff both sharon and i wrote about– dry skin, temporary loss of hair, fatigue, etc. the longterm stuff might be infertility/menopause for women, and infertility/andropause for men. your age really comes into play here. i was already in my 40’s when i had the treatment so i went straight into menopause. i am in touch with about half the folks that went through the protocol and i know that one young gal, early 20’s, told me that her periods were off for about a year post transplant but seem to have stabilized since. in my case, my ovaries immediately shutdown– i began menopause while still in the hospital!

that’s about it. lot’s of folks that have not read or properly understood what they have read, like to contribute to this topic in various ways. for example, this is an autologous stem cell transplant, not an allogenic one. big words that mean either your own stem cells or donor cells… these are YOUR OWN stem cells, taken right out of your own body before they bring down your immune system with chemo. hence, there is no issue with rejection, graft vs host disease (gvhd), anti-rejection drugs, etc….! your body is more than happy to receive these cells as they belong in your body, period. another misnomer both doctors and regular folk like to promote is the issue of mortality– i have read on this very forum people quoting statistics in the range of 20-25% mortality, or saying that “their neurologist says its very dangerous.” my believe is that just like with my neuro and many others i have seen make this mistake– they are assuming that this treatment is myeloablative and aggressive, just like they have heard about from an oncology class they took in their 2nd year of medical school– the one for blood and lymphatic cancers… there are places in the world that are doing this treatment on an out-patient basis! claims of 20-some odd % mortality just isn’t so michelle. so just be careful to get your info from those who really know what they are talking about– compel your neuro to speak directly with dr. burt on the phone– he will talk to your doctor, he’s good that way. and at the end of the day, if you still don’t have your neuro’s support, make your own decision and drop him/her like a hot potato and run, don’t walk to chicago.

many of us are here to talk with should you choose to. i am always available and i can put you in touch with 4-5 others who will also talk with you. i think there are just 3 of us actively on this forum: me, sharon (anastasia52) and rossana (imfan?).

additionally, i can put you in touch with: jim (8 mo), tannia (1.5 yr), lynn (1.75 yr), bobby (8 mo) and jennifer o. at 5 years will still field a call or two…

write me if you would like to be in touch directly michelle: [email]alicedicroce@mac.com[/email]
that goes for anyone– write me if you want to talk–
[/FONT]

thank so you so much for the information and taking the time to write. i am afraid my neuro won’t be as aggressive as i want him to be since i am making steady positive progress. i just don’t want a relapse and i don’t want to be worried about one for years to come.
as far as the side effects…i was 30 weeks pregnant with my son when i was diagnosed and being a single mom, i don’t think i will be having another baby regardless. i am 36 so age should be on my side.
i appreciate all your insight and information. what a dream it would be to get back to my normal life and not have to worry abut this disease getting in the way of normal everyday activities that i have to/want to do with my son.
i will discuss with my dr and see what he says.
thanks again
blessings

Well, I almost finished this incredibly long response, when I hit some button that deleted everything. How annoying. I will try to reconstruct in an abbreviated form.

Re: mortality rates for this procedure: There have been none for CIDP patients. I asked. Paula Gozdziak of the Burt team stated that those few deaths that have occurred were the result of compromised internal organs which, in turn, were the result of autoimmune diseases that can affect internal structures. I believe she specifically mentioned rheumatoid arthritis.

The biggest risk, according to Dr. Burt, is infection once you become neutropenic (white blood cells wiped out). But they introduce all sorts of infection-fighting drugs once your white cells are gone. You get anti-bacterials (two types, I believe), plus an anti-fungal and an anti-viral. There are other protocols in place to reduce the chance of infection — masking, gloving when out of your room, constant hand-washing, etc. Also, on returning home, the Burt team will have you undergo regular blood tests until your 6 month check-up. Anything else that comes up health-wise can be discussed with Paula. Look at it this way: The Burt team has a vested interest in ensuring successful outcomes for SCT…the better the data the quicker and more likely it is that SCT becomes standard treatment.

Michelle — I’m with you…I wanted this disease GONE…not treated. I believe the evidence suggests that SCT is our best hope for long-term remission. It really is a cure, in my book, because you have killed off the bad guys which are causing the disease (state of neutropenia) and then introduced your uncorrupted stem cells into a pristine environment. As you know, this disease is environmental in origin, so the chances of your being exposed to the same set of environmental factors that caused CIDP is probably very slim.

Alice — yes I got the striped fingernails and figured it was from the chemo. Thanks for the info about the dry skin. I’m 57, so I didn’t have to worry about premature menopause. Finally, it is the remitting/relapsing form of MS that is most curable. I asked Dr. B if that was also true of CIDP. He said it was an “astute question,” that he had no answer to. I have the progressive type, but on the other hand I haven’t had it long, so I am hopeful.

Anyone wishing more info on my own personal experience with SCT is welcome to PM me.

Sharon

Michelle, I forgot that I wanted to suggest that you contact Paula Gozdziak, even though you are experiencing improvement on IVig. I think they are loosening their restrictions on participation. For example, I know that you only have had to fail 2 treatments now (as opposed to 3). It doesn’t hurt to say that improvement on IVig is slow and by no means are you assured that you will experience full recovery on IVig. Just a thought.

Sharon

[FONT=”Microsoft Sans Serif”]including the part about contacting paula gozdziak at: [email]pgozdzia@nmff.org[/email]
she is very easy to talk with and can lead you in the right direction–

you have many resources for info– we are all happy to share our personal experiences with you 😉 and you do deserve that time with micah 🙂 !

best and hope you stay in touch,
alice

p.s. sharon, it is lupus, i believe, that caused the total system breakdown…[/FONT]

I agree with Sharon and Alice, Paula is easy to talk with and is very helpful. At the end of the first year of IVIG therapy, I was much improved. Half way through the second year, it quit working and now I am worse than when originally diagnosed. My neurologist was reluctant at first, but then he read up on this particular program and spoke with Dr. Burt. Now he is very supportive. I have my evaluation in Jan and am very hopeful.

Firstable I want to apologize to Sharon for not responding earlier, I ve been kind of lazy this weekend and didnt even turned on my computer. LOL

Im always available to talk to people about my experience,specially if it can help someone. I have a lot to share…lol

I had my SCT last June. I had CIDP for 14 yrs. Had all the treatments available over the yrs. Prednisone,cellcept, IVIG every 2 weeks and pheresis. My cidp was progressive ,but stable in the sense that I could walk (being careful)and work. I was weak ,numb,tingling all that and I knew my limitations. I got sick at 23, so I learned to live with it and to know my body.
I had a great team of doctor,nurse, and pharmacist who helped me through my journey and helped me to get SCT . Without them, I probably wouldnt be here today sharing my story.

You need to build a good relationship with your doctor. Prepare yourself about the treatment, ask a lot of questions to us or Paula so you can explain it to them and why you think is the right treatment for you and why they need to help you. We make the decision to go through with it , but their support is essential. At least it was for me, for insurance purposes and after transplant he has been there for me. Specially this last few weeks. Because he knows the details and understands it.

As Alice and Sharon said the side effects from SCT are nothing compare to 14 yrs of treatments and frustrations. Dry skin,chipped lips,loss of hair, fatigue ,menopause,line on my nails (its almost gone…maybe another month or so) etc nothing compares to what I ve been through before.
For the last few weeks my counts had been low and had a little problem with the liver counts, so I ve been really really tired (that’s why didnt check emails over the weekend…lol) . I feel better today and counts went up a little.
The body needs to heal on its own (I ve been told…lol)after transplant, Im not taking any medicines. I did get frustrated last week and the one before because I wasnt feeling as good as I hoped. Alice,Jim,Bobby….who have gone through this before me, told me to be patience and Im trying…. LOL

On examination last week with my neurologist, he was surprised of my strenght, no numbness (except where my nerve biopsy was done) sensitivity to cold and vibration and the best part ….I had excellent reflexes ! I was surprised too! my balance is better. He said…wow cidp its gone!! no signs of it. Just the scars from it….lol It was a great feeling ! to know that even though they dont like saying it …SCT it is a cure!!!

I know that I hit bottom already, so the only way to go now is up on my healing process! And I cant wait…after giving all my 20’s and 30’s to cidp, hospitals, meds and doctors….I cant wait to start a life without cidp!!

I would recommend this to anyone. I know this is going to change my life once healing is complete.
Please dont hesitate to contact me and ask questions. I can talk at anytime, just email me or pm. It helps me too!.

I also kept a blog during my treatment. You can read it at
[url]http://rossanascidp.blogspot.com/[/url]

Thank you and best wishes for all.

OK guys, I want to say up front that I am asking these questions from the heart, so I can find out and inquire, they are honest questions, I am not trying to put a wrench in the thread. I have always thought this was a viable, real treatment for a cure, remission, whatever anyone wants to classify the word as. I have just always had my reservations regarding the long term side affects. My brother in law had hodgkins some 18 years ago and is just this past year seeing the sideaffects of the chemo. I posted in another thread that I am just so sick of watching Kev suffer, I feel like I have to do something. We are having issues, thyroid tested positive for antibodies, #’s are still good but now we have to test function every 3-6 months, adrenal gland may be an issue, antibodies were not present and cortisol level was fine, but acth plasma was 70 with 20-50 being the range. He is always tired and weak lateley. We are on a maint dose every 2 weeks. I think that there is more benefit to the basis of the procedure than just curing cidp, I think as a whole it is a total reset for all of the other autoimmunes we get, I think that is why you guys feel so good. No one ever talks about that, do you think that is an accurate statement? Why do you think the procedure is so focused on specific diseases, catagorized? It is obviously helping ms, cidp, it could probably take care of ALL autoimmunes, not just the symptoms of each individually.

Anyway, here is my big hang up, this has been my hang up the entire time. Because Kev is a child, there is so much to consider regarding the long term side affects of the chemo regarding development, cancer, and how the chemo acts in young cells regarding the development of cancer or other genetic issues. Could you guys help me out and find me some statistics on it? I don’t even know if they would do a child. We might have another family member with this crap, of course it has been six months of back and forth to docs and no answer. I am going to try to convince them to let me help. We will see. Life is just so messed up, I am finding it hard to look for the good and think positive. Too many things are happening!! My dad is deteriorating fast with his lewy body dimentia, he does not even know who I am, I go daily to feed him because he doesn’t even understand that food goes in your mouth, it is just so messed up!! Anyway, thanks for listening to my rant.

i havev students coming into my classroom so i will respond with much more later. however, what did you mean but the disease being environmental in nature? i was told there was no rhyme or reason.
do explain cause that’s soooo interesting.

thanks

i am so sorry to hear about your struggles. i have seen your posts on here before and i always thought…good God i can’t imagine my child having this disease it’s just pure evil.
keep your faith up and try to find…even if it’s small, one thing to smile or giggle about.
believe me, i have had my moments but my sisters would just remind me that if we didn’t laugh we surely would cry forever.

i would be concerned about long term effects for a child. that’s an excellent question. i just wonder that if there is a cure then why are we all just struggling with this?

I started to research the effects of chemo on children. But, I ended up looking up the stem cell transplant trial criteria instead.

I found this: “Exclusion CriteriaAge > 65 years old or < 18 years old." So, it would appear anyone younger than 18 is not eligible. A phone call to Paula would confirm that. trial link is [url]http://www.clinicaltrials.gov/ct2/show/NCT00278629[/url] On the other hand, it's still a valid question because immunosuppressant drugs are sometimes used by folks with cidp in lieu of, or to wean off of IVIG.

There was a young man who must have been right around 18-20 who had the SCT. I know this because he was a patient of my local neurologist and his mother was a poster on this forum, and I contacted her. I believe his SCT would have taken place around 3 years ago. According to the young man, aqs well as my neurologist, he was in pretty bad shape…was confined to a wheelchair and had no sense of his limbs (no proprioception). I believe he may have had some improvement with standard treatment…but not much.

Three years after SCT he is left with residual weakness in one of his hands (he has difficulty opening jars and the like); also he states that he continues to have some difficulty with drop foot and a bit of numbness, I believe, on the bottoms of his feet. However, considering where he was, he has done marvelously well…has been able to return to college, has a part time job, etc. Also, he is off all meds.

I am guessing that this person is the youngest so far of Burt’s CIDP patients.

Sharon

[FONT=”Microsoft Sans Serif”]despite the age qualification range 18-65, doc burt did take a teenager– i asked sophie if she remembered from our conversation with burt how old exactly, and we both think the guy was 15 yrs old. i specifically remember dr. burt telling us how he had to fight with the hospital administration because they feared liability, since the kid was outside of the protocol parameters. he did respond exceptionally well, i remember that part– and part of that, according to burt, was because he was so young…

cheers–[/FONT]

Dawnkeviesmom,
I can feel your pain and frustration. I ve seen how much my mom suffered for me during all these years and Im not a child. You need to be positive as much as you can I know is not easy but you are an example for your son. He looks up to you and counts on you to help him to get better.

The procedure is still under research that s why they only do the trial on some autoimmunes diseases. Hopefully in a few years will be available for ALL autoimmune problems.

Dont get so hung up on side effects,dont worry about it, there is always something else to help with side effects. Every medicine we take has side effects they are all chemicals. I ve taken many over the years… sometimes we have to take them no matter what to survive.

The outcome of the transplant is what is important. How much actually help us and changes our life and how we feel. If your son is young call Paula and ask, she will help you. It could change your son s life for good. Side effects are not that important .We learn to deal with them as they come.
Look at the big picture….better quality of life! for everybody.

Take care and dont hesitate to ask questions and vent.
Rossana

How bad do you think the cidp has to be to consider sct? In my case the numbness and weakness is in my feet,ankle and calve area. I can walk independently with no aids but it is a lot more tiring than before my cidp diagnosis. Cannot run anymore, can’t jump or skate. ski etc. Balance is not good. At this point it has not affected any body parts above my shins. I was pretty strong before so quads are still strong and sort of help out with lower body weakness. I have been following all your sct posts and this sounds much better than my current regiman of ivig every six weeks–which i guess is keeping things from progressing. But like was mentioned in your posts–why spend the rest of our lives with treatments if the sct is a cure!!! I guess my main question is how bad do you feel the cidp would have to be to consider sct to cure it. I currently work full time–would this be possible soon after sct? Thanks again for your posts on this topic and for taking the time to answer the many ?s about it. : ) Lori

Lori222,

it depends. I think is a personal choice if you qualify. After doing all the necessary research, talking to my doctor and chicago , analizing pros and cons…I decided to go for it. Everybody has have different intensities.

I’m waiting my 6 months review to see if I can go back to work in january. some wait a little longer, all depends how you feel .

Rossana

[FONT=”Microsoft Sans Serif”]hey there–
to answer your question i would ask you to ask yourself if living like you’re living is acceptable– and– will your current condition stay stable with your ivig treatments or, like many, will it progress at a later date despite ivig or other treatments…?

obviously no one can answer the question for you lori. it is a very personal and significant decision. but i would say this– consider it a treat to yourself, like considering yourself worth the effort, time and money. you mention work– consider 4 months (minimum) off work between treatment and recovery (depending upon how strenuous your work is of course). but also consider whether you will be able to work in the future if your condition worsens.

i can tell you that i knew 3 months after my 1st symptoms that i was getting the SCT. I did NOT want to live with this story– its a life sentence and i just couldn’t accept that. maybe i’m too spoiled but maybe that’s not such a bad thing in this realm… and at 3 mo. after 1st symptoms, i was less damaged than you are now, according to your description– and i would have gone then, if they would of allowed it. as it was, i had to 1st try and fail two treatments to be eligible. that is exactly what i did.

best–
[/FONT]

Hi, Lori,

I believe it is important to stress, as Alice points out, than many, many people eventually get worse while on IVig, prednisone or plasmapherisis, the standard treatments. In fact, that is the fate of most. Autoimmune diseases tend to be progressive by nature…so treatment that has worked for awhile may come to be ineffective. Also, I have heard it said — maybe on this forum — that improvement after a relapse never quite gets you back to where you were. You always lose a little ground. I can’t speak to that, since I never had a remission to have a relapse from!

Undergoing SCT really is a personal decision. My neuro here kept telling me that I likely would not experience full recovery, since I have axonal damage in my legs. My response was: “That may be true, but at least I won’t have this stinking disease.” Getting rid of the disease was the decisive factor for me. That said, I fully expect to recover some, if not all, function. I am already seeing improvement in my hands…once upon a time, just typing this would have been a major challenge, because of tremors in my left hand.

Lori, if you decide not to do SCT, I hope your decision will not be based on fear. It really is not a risky procedure, though of course there are risks, just as there are in any major medical procedure.

Best of luck in arriving at a decision that is right for you.

Sharon

I was just wondering if you all could give me links to the studies showing most people with CIDP will progressively get worse because their treatments stop working.

This is very interesting to me as I have a 9 year old on IVIG & always worry about it losing it’s effectiveness. She’s doing well & improving but it’s always in the back of my mind.

Thanks.
Kelly

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

[FONT=”Microsoft Sans Serif”]i thought some of you might find this link interesting– it is about Jennifer Osman, [I][B]the very 1st person[/B][/I] to go through the SCT at northwestern.
[url]http://www.medicine.northwestern.edu/10/mar/matter-life-and-death[/url]

while i was hospitalized at NW, one of my nurses is jennifer’s neighbor and i guess they have something in common since they’re both nurses and of course jennifer was treated at the ward where she works. anyway, the nurse told me the horrible condition jennifer was in while being treated and speaks of her now as being completely healed!

i spoke to jennifer a few times when i was considering SCT and she said it was life-saving for her– she is medicine free now living life without cidp! see her blog and updates here: [url]http://www.caringbridge.org/il/jeno/[/url]

she is a very lovely person and, although busy raising little ones, happy to speak with anyone– i definitely have the feeling that cidp is very far behind her now and that she doesn’t think much about it anymore. she is almost 6 years post SCT and is overwhelmingly thankful.

(kelly) while i don’t have specific sources at hand to back up sharon’s statement that “Autoimmune diseases tend to be progressive by nature…so treatment that has worked for awhile may come to be ineffective,” i will point out that jennifer is a case in point for treatment becoming ineffective. also, haven’t so many folks on this very forum expressed being steady for a period only to post on how treatment is no longer holding their condition at bay…? i have certainly read this over and over again. a personal friend of mine, Linda M, experienced this very phenomenon over the past year. IVIG had worked wonders for her for quite a while when all of a sudden, boom, she began declining. linda is much worse than before and even with an increase in frequency of ivig, as well as additional therapies, she sadly continues to decline. linda is going to NW in january to find out if she is eligible for SCT.

i would imagine that actual research data exists to answer your query kelly, i just don’t have any. perhaps the foundation? perhaps a teaching hospital like mayo or hopkins? don’t know.

kelly, i am glad that emily is doing well. nobody should have to contend with this crap, especially not the very young or old… emily is too young right now anyway for SCT but maybe by the time she is old enough, she won’t even have the condition anymore (hopefully). but should she still have it, at least significantly more research and trials will have been done with SCT, and by then perhaps you’ll feel more comfortable with it…

lori, i doubt you would be ineligible based on what you’ve written… in fact, they don’t want folks that are too far debilitated. to quote the great doc burt, “it’s like closing the barn door after the horses get out.” only one way to know– make an appointment through paula gozdziak for an evaluation 😉

peace–[/FONT]

i have rreally found all of your posts so interestng and educational. i have a question: where did they extract your stem cells from?
i was reading about how this procedure works because it brings you to the edge of death and back. it is a personal decision and what’s frustrating in my case is i just am losing my patience with the speed of which i am getting stronger.
today is not such a good day as my fatigue is overwhelming and balance is off. i came into work (i’m a middle school art teacher)but i know i will be sitting in my chair all day. thinking of taking tomrrow off.

[FONT=”Microsoft Sans Serif”]they take the stem cells right out of your neck, your jugular to be specific. yeah, i know– very high on the creepy scale but honestly painless. after they insert the “vas cath,” you head over to the blood center where they hook you up to an apheresis machine that extracts your stem cells, much like the way plasma exchange or dialysis works. here is a link that shows the placement of the vas cath:
[B][url]http://www.wikiradiography.com/page/Vas+Cath[/url]
[/B]and here is the machine and process:
[B][url]http://ns2.web-books.com/eLibrary/ON/B0/B16/22MB16.html[/url]
[/B]
fun stuff huh…?
but seriously not painful– just tiring and high on the creepy scale.[/FONT]

I may have misspoken about CIDP nearly always getting worse. I am basing this on what I have read on the forum… so it is really anecdotal evidence that I am citing, rather than statistical evidence. It may well be that many of us on the forum represent the “hard cases.” I know, for myself, I didn’t even look for this forum until the standard treatments failed and then I started taking CIDP VERY seriously.

It would be interesting to know if there are any stats on sustained remission with standard treatments.

Anyone?

Sharon

Lori, I wasn’t much worse than you are now when I had my sct. Like you I had numbness and sensory loss calves and below. However, the insides and backs of my legs were never affected…only the outsides and fronts of my legs. Nevertheless, my legs began to atrophy a bit and balance and walking easily became a problem. I developed drop foot in my left foot and, in Nov. 2009, tripped on my foot and broke it. That scared the bejabbers out of me. I began using a cane out of doors (not in the house), and in Jan. 2010 I was fitted for leg braces. Also, around Nov.2009 I began to have slight numbness and shaking in my left hand.

I continued to work up until I received the call from Northwestern in late July of this year. I run a non-profit with 4 offices throughout the state, so it is a pretty demanding job. Truthfully, for the last 3-4 months that I was there, prior to going to Chicago, I was fatigued and foggy towards the end of the day. Partly that was the disease; partly the massive doses of prednisone I was taking.

Anyway, I don’t think it matters much how bad your CIDP is, and I believe that they won’t even take people in wheelchairs anymore (at least that is what my neurologist at Northwestern told me). The larger issue is have you failed to significantly improve under the standard treatment plans? You mentioned that you had taken prednisone. Did that not work? If not, and you are not realizing much improvement on IVig, you may qualify as a candidate.

Good luck!

Sharon

PS: My insurance paid for both the evaluation and the sct. The evaluation was listed as a second opinion, which is why they paid for it. My doctor here requested the second opinion and had a peer-to-peer consultation with the
BC/BS staff physician in order to obtain approval.

I’m glad you cleared that up Anastasia52.

I was beginning to worry that I have missed out on some important research.

From what I have read over the last 5 years most people tolerate the standard treatments quite well & go on to lead nearly normal lives. I feel the reason why we hear so much of the opposite on this forum is because those that are better are not out looking for support. We usually only hear the worst case scenarios here.

Kelly

i was researching and found this.
i know i have to be careful with research on the internet…but i found it to be interesting.

[url]http://jnnp.bmj.com/content/77/1/66.abstract[/url]

Micah’s Mom – I have read that study before. Thanks for sharing it.

It gave me lots of hope during the early days when I needed it most. I remember thinking that I can deal with a 39% chance of still doing treatments but Emily still leading a normal life or a 48% chance of her going into remission within 5 years.

We are coming up on 5 years & she’s getting .75 grams per kg every 4 weeks. That’s down from 4 grams per kg 2-3 times a week.

I think the odds are in our favor! (FINGERS CROSSED!) If we were in Vegas I’d take the chance & bet on it!

I have also read research that states 70% of children will go into remission. I don’t remember the time frame though….it was awhile ago when I read it but it’s something I’ve held onto for hope.

Kelly

Alice – I do feel that SCT will be more available in the future. I just hope long term studies are done on the possible side effects. That’s where my main concern is.

I have my fingers crossed that Emily will never have to make that decision. She’s doing great today & I’m really hopeful that she will continue to do well as we wean her off of IVIG.

I hear you are going back to work & that is FANTASTIC! Congratulations!

Kelly

[FONT=”Microsoft Sans Serif”]i have always heard the the younger one is, the better the chances of remission. i do hope that is exactly what is happening with your emily… from what you say, it sure sounds plausible.

what a success story it would be if you could post that emily is not relapsing after being free of ivig for a sustained period! i’ll look out for that post with eagerness 😉

in good health!
alice[/FONT]

“what a success story it would be if you could post that emily is not relapsing after being free of ivig for a sustained period! i’ll look out for that post with eagerness ;-)”

Me too! Maybe some of us — and I include myself — forget that plenty of people have sustained improvement utilizing the standard treatments.

Apropos to that, I just finished a book by Piers Anthony and was reading the author’s note in the back. He described his wife (then, apparently in her
70’s) as follows:

“My wife’s strength declined mysteriously, until she could no longer walk or even stand and was confined to a wheelchair. She could not move it herself, because her arms weakened the same way her legs did….”

Hmmm, I thought, this sure sounds like CIDP. And it was. The author goes on to state that they finally got the dx of CIDP and the wife began a regimen of IVig, after which,

“…she was able to learn to walk again, painfully, and now is securely back on her feet. She can’t walk far, but she can function well enough.”

Maybe not a complete recovery, but considering her age and where she was pre-IVig, this may have been as close to complete as she could hope for, under any circumstances.

Sharon

yes i recently did a prednisone trial and got worse on the pred. I dont think at this point i have given the ivig enough time to make a definite decision. For the past year i had ivig every 12 weeks and just recently was changed to every 6 weeks–so ive only had one treatment thats been 6 weeks apart so far. I see my dr in feb–the same day as i finish my 3rd ivig @ every 6 weeks. so im hoping at that time i’ll have a better idea on the ivig. At every 12 weeks for a year i had some improvement and nothing got worse–so i should give it a chance at every 6 weeks. I asked my neuro about monthly but she said no for some reason??? I also have not tried plasma exchange and possibly should try that before sct??–im not sure. In my cidp i tested positive for vgkc antibodies on a paraneoplastic panel lab test. I would think there should be a way to keep filtering the blood until the antibody level is 0 since they know what they are looking for–but im not a dr. and i guess it isnt as easy as that. I appreciate all the info you have all offered on the sct–makes me feel real positive about it : ) so after the sct did you regain all the strength and feeling in your lower legs. If so how long after the procedure did it take? how long did you try the ivig and did you have any response from it? sometimes i find it real hard to determine if im getting better on it–then i think of things that are easier now than a year ago before ivig–it s such a slow gradual thing its really hard to determine. Lori

never mind my questions–ypu already posted that info–on this same thread even–lol…..i was just numbing it and didnt have the sharon/anastasia on the same page in my head Lori