In case you are interested, I had Stem Cell Transplantation done six months ago. I have been RA free and medicine free since. My RA was severe and I have been left with alot of damage. So I guess you could saw I have OA which to ME is nothing.
Anyway you can read about my procedure by going to
click on visit box
insert luann into site name box
and then click visit box
It was a very tough procedure and a last resort, but gave me my life back. Also please note that this procedure was done with my own cells, not the media hype focusing on embryonic cells.
Take Care, LuAnn
Awesome. So there is hope outside the traditional medicines. Sounds as though you've had a very tough time of it - but life is much better. Congratulations and thank you for sharing.LuAnn,
How did you find out about this? Is this still experimental? Do the DR's feel you will be - dare I say it CURED?
Please tell us more, thanks!
Jody
Jody,
Don't laugh, but read about procedure two years ago in National Enquirer!!! They always talk about cutting edge medicine before it hits the mainstream.
So I see headline "Crippling Arthritis Cured", and read the article with great interest. Looked up Doctor and talked to him on several occassions. Researched Doctor and found out he had the best success rate and was the first to start stem cell on auto immune diseases since 1997.
He was recently on Good Morning America with a lupus patient seven years disease free and another woman 18 months disease free from MS.
My insurance covered the procedure but they do consider it a trial and you have to qualify for the program. I was #7 for RA and am doing great. My biggest problem was the artifical knees and those darn PICC infections giving me sepis. I am happy I was given the opportunity to have this done but now I want them to use the other 9 million stem cells they collected from me and rebuild bone. Talking to my orthopedic Doctor on Wednesday about this.
It is amazing stuff that you can repair your body with Adult Stem Cells (hopefully your own).
At this time, I am disease free and medicine free since the procedure was done six months ago. I am only taking supplements for helping my body recover. (And anti-viral I have to take for a year until all T & B cells return to normal).
LuAnn
So why isn't this recommended by more doctors?
Susan
Susan,
There are only four hospitals in the country that do this procedure and it is a last resort thing where your RA is so bad that your life span has been shortened.
Hope that answers the intent of your question.
LuAnn
Thanks, LuAnn. Maybe in the future, huh?Luann,
Can you post or email me more information about the transplant?? I hope I am not being to nosey but how much money have you been out of pocket?? How do you contact the doctor?? I have had JRA since i was 13, I am now 33. I have been thru 9 joint replacement surgeries and looking at more surgeries. My email address is scottsanders@dctonline.net
Thanks,
Scott
Scott,
I was one of the first to have this procedure that had two knee replacements. It was a learning experience for them because I got sepis from the PICC line. I could have lost my legs.
You can contact Kim Bracy with the Stem Cell Team at 312-908-0059. You would have to qualify for the procedure. Kim could answer any of your questions and send you out a packet. Be sure and read the journal because it is a tough procedure.
It is odd because now I have no active RA and I am working to repair the damage from the disease. My personal e-mail is on the caringbridge website and you can contact me any time if you have anymore questions.
Also they submit everything to insurance if you qualify and let you know ahead of time what costs are involved.
Good Luck to you,
LuAnn
Not sure of hospitals
Northwestern Chicago
One in Florida
one in Calif
Lots of other cities opening up centers
Call your local hospital and ask if they have stem cell dept or where one is close by
Good Luck
How have you been doing?? Are you getting stronger??
Hi Scott,
Good to hear from you. I have not posted seven month post transplant, as I am still waiting for all blood work to come in from lab.
Physically, I feel great. My old energy level is back ... warp drive!
The bloodwork has been good except (alk pos) reading keeps going up ever month and no one can figure it out. Since I had several transfusions, they tested for Hep A, Hep B and Hep C and all reading were neg. The CBC blood panel is good and their is not infection in the blood. Thyroid function is good (sometimes stem cell messes up thyroid). So if mystery isn't solved, I have to see liver specialist before things get worse on (alk pos) readings. Also don't drink or take any medicine except anti-viral which they say I need to take until Jan.
My strength is slowly coming back. I see differences. Thanks for asking. How are you doing? With all your replacements, have you ever had problems with infections? Just curious.
Have a Blessed Day,
LuAnn
Lu,
Glad to hear you are going well. I have yet to get up the nerve to call about Kim about the transplant.
Most of my replacements are doing well except my left hip. For some reason I have been having some pain, I am have that checked out tomorrow. I think I am just getting to fat and the weight is starting to catch up to me.
I had an infection once. When I had my first joint replacement, which was my right hip but everything worked out OK
That's incredible - thank you for sharing. Some of our posters have certainly had it tough but occasionally there's a good result reported.Do they do this JUST for RA? Or other immune disorders as well? I'm more curious for my b/f, he has crohn's and it is VERY severe. But we have no health insurance...he wouldn't even mind going as a test patient kind of thing. He's already done one of those, and it helped somewhat, but it was a fairly simple test procedure.Wow. I always wondered if stem cell procedures for RA. So, stemcell4me, can stem cell treatment actually REPAIR damaged joints, or does it just keep things from getting worse? Either way, that is a very interesting subject and something I would like to learn about. Also, you said something about RA being so bad it can shorten your life span. I know that RA is an immune dissorder, so i have always wondered about if I need to be worried about not living too long. So far, my doc hasn't said nothing about it, and he actually thinks it is possible that the arthritis is techinically out of my system, and only the joint damage remains. Would that make a difference in any lifespan problems? I really do have a lot of questions now to ask at my next appointment with my RD. I would just like to know if you, or anyone, could give me some idea of what to expect.
Take care,
Jesse
No, Jesse I think you're okay as far as life-span goes. Active RA can attack anything, it just tends to stay in the joints. The same holds true for any inflammatory disease. It can attack your heart and other major organs, and that's where the shortened life span comes in. If you have inflammation attacking organs, even if they don't kill you at the time, it's a lot of stress and wear and tear on them, and it can basically make them quit sooner. Plus I'm sure there's more I don't know about. If you really are in a full remission, and there is no trace of the RA, you're just left with damage, I don't see why you wouldn't have a full life expectancy. :)Jesse,
I was chosen for stem cell transplantation because my RA had moved into my heart and neck. The neck being the worst. They felt if my neck dislocated than there could be paralysis or death.
The stem cell removed the active RA but I do have bone damage. As far as repair, there have been some cases that x-rays have shown improvement in damage through growth or repair. But that doesn't start to show up for about a year or further.
Everyone has varying degrees of RA, mine was severe. I had 33 affected joints. Total knee replacements were done in 2000. Or like Scott that has had nine joint replacements.
Some people have RA their whole life and have little or no damage.
Its a complex disease and no size fits all. It sounds like your RA is pretty much under control and you just have to insure it stays that way with regular bloodwork and check-ups.
Thank you all for all the info,
Jesse
Dear Jesse,
Please accept my apologies as I got the impression your RA was under control and you had no active RA.
Stem Cell is an option when their is nothing else. It is tough and their is risk involved so I like to write about my experiences but never suggest that this should be done. It is a personal choice between patient and Doctor.
Since I was #7 with RA, my challenge was the PICC line infections and the fact that your artificial joints can be adversely affected. I got sepsis and that was the bane of the whole procedure. I did not want to lose my legs.
I would be glad to give you any information you might need.
LuAnn
PS Northwestern Memorial is right in your neighborhood. The have the best success rates with stem cell for auto immune diseases.
Hey LuAnn, no need to appologize. The fact of the matter is that my RA actually DOES seem to be under control, and whether or not there is any "active" RA in my system, I don't know. I don't really have any real pain anymore, unless I am just on my feet for a long time, or I'm particularly active on any certain day. And even then, it seems to be more of a muscle pain rather than the actual joints, or the bottoms of my feet will hurt after being on them for too long, or my knees will get stiff if I am either standing too long, or if I keep them bent too long. I have said in other posts that my RD has stated that my RA may actually be in remission or gone all together. Maybe I should explain why he said that. For one thing, over the past 5 years or so, maybe longer, I haven't really gotten any worse, either pain-wise, or range of motion-wise. Also, last year, I had a tumor in my back. A type of b-cell lymphoma. I went through chemo therapy and that got rid of the tumor. What some people may not know is that chemo therapy isn't just this one drug they gove to cancer patients, but it is a combination of different types of drugs. And that combination varies depending on what type of cancer you have. Well, one of the drugs they put me on was prednisone. I used to take prednisone as a child and was eventually taken off of it. Well, a few months back, during my last appointment with my RD, he asked me if I had felt any better as far as my arthritis goes while I was going through chemo and taking the prednisone. My oncologist also suggested that if anything, the chemo would actually have a possitive affect on my arthritis. However, when my RD asked if I had felt any better from the prednisone, my answer was no. Nor did I feel any worse after I stopped taking it after the chemo was done. Also, if I miss my meds some morning, I don't really feel too much worse than if I had taken them. I may be a little stiff or sore, but no more than usual. So this has led my RD to believe that my RA isn't really active in my system. So the bottom line is I'm not really getting any worse. I;m not getting any better either. And my joint damage is so severe, that it is hard to tell how much my range of motion is being affected, because many of my joints, like my wrists, and many of my fingerjoints, are completely fused together. And others, like my knees and neck, have very little movement. I would say that my shoulders and ankles have what I would call moderate movement.
So back to the whole stem cell thing, i know that there are risks with any type of medical procedure. I guess if the actual RA in my system isn't too active, or not active at all, then I would say it's not worth the risk. However, if theres nyway that stem cells can repair damaged bone and or cartilage, then I might be more willing to take the risk. Although, I have had both my hips and elbows replaced. So if stem cell treatment can affect those, then I don't know. You talked about almost losing your legs to infection. If I got infection, I could possibly face losing both my legs and arms. That is not an option for me. I would rather have the crappy arms and legs I have now than have none at all.
Anyway, you've given me a lot to think about.
Take care and good luck with your health and recovery,
Jesse
Hey LuAnn
Just want to say Thank You again for sharing all of this with us. It gives us hope.
I'm so happy for you, girl!
Jody
Hey Jesse,
Sounds like we are in the same boat, no active RA but lots of damage. Well guess what?, they are presently working on rebuilding bone and cartilage with stem cells. So it probably is a matter of time before that this will be around the bend.
They have had success with rebuilding veins and heart damage with stem cells and all of this should be available in our lifetime.
Go to www.stemcellresearch.org and read all the articles the the public has not been told about with too much media coverage.
The media prefers to overshadow the success by constantly bringing up the attenttion getting debate on embryonic stem cells.
Hi Trixie, thanks for your kind thoughts and encouragement.
LuAnn
Hi Everyone,
I just posted Nine Month Post transplant journal on website.(caringbridge.org)
Everything is going great!!!!!
LuAnn