Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Stem Cell

Hey All,

I have PsA with strong neck and shoulder involvement. I have been very interested to see that Crohn's disease has been cured in some cases with stem cell therapy.

I also noticed there are some suspect operations offering treatment for AS?

Has anyone tried such therapies or know of anyone who has?

Rippin

Operations - i.e. those that can correct spinal deformity, as in the the osteotomy? A very few of our members here have had such, go to the surgery forum, read up on Alan's double osteotomy. But 1) needs VERY specialised surgeon to do 2) will only be done under certain circs - the patient has to meet several criteria. It is not for everyone and not usually warranted.

In addition, AS is a systemic disease, far more than the spine involved. Even after the surgery still need to be on medication - Alan I believe is on one of the biologics and is also on pain meds - put in a note to him, he is an obliging fella, will answer yr questions.

You can google up on it, just put in search criteria like : 'spinal surgery for ankylosing spondylitis' and another : 'spinal surgery not advised for A.... S....' etc and so on. Soon get yourself a raft of information.

At the end of the day, there is no actual 'cure' for AS. It is continual management.

As for Crohn's, there have been good reports after treating with Naltrexone, low dose Naltrexone, as in 2.5mg to 4.75mg - UC Davis have recently completed drug trials on LDN. You can put in a search here on KA - a number of members here take LDN (including myself). Yes, it works and works well for spinal inflammation as well as.

Welcome to the KA family -

Molly C (France)
Keeping on Keeping on (as we all do)

There is no cure for Crohns or AS. There are treatments, but there has never been a"cure". I would be very suspicious of anyone who claimed they knew of a "cure".

Right on Donna - I forgot to put in the caveat re Crohn's - Crohn's and AS - and other autoimmune diseases, are INcurable. it is all a question of management. IF lucky might get a remission, but is still an all still stirring underneath.

Beware charletans...and of course snake oil!!!

I think there is a big difference between saying that there are no current treatments that are known to be curative and saying that a disease is incurable. My interpretation of the term 'incurable' is that it is impossible for a cure to exist rather than simply that no cure is currently known. Others may interpret it differently.

Yes, good point jroc - no cure is currently known - but so far a case of management of - can get a remission

Actually Crohn's has been cured in some cases. This doesn't seem to have transferred so well to RA but I'm unsure about other autoimmune rheumatic complaints.

Do your research before you say there is no cure for Crohn's. You can have a look in peer reviewed medical journals as well.


http://singularityhub.com/2009/03/03/crohns-disease-cured-by-stem-cell-therapy/

This journal article has some good info the subject - Crohn disease: remissions but no cure - http://bloodjournal.hematologylibrary.org/content/116/26/5790.full

Ten year remission is a cure as far as I'm concerned.

There is no doubt that it is a promising new type of treatment. However if you look at the Burt et al study the percentage of patients that were clinical relapse-free after 5 years was only 19%. Some patients may experience a long term remission and never relapse and may even be considered to be cured but they are the minority according to the current available data.

Some of the results seem to have been over hyped. For example the paper in Nature in 2003 entitled 'Complete remission of Crohn's disease after high-dose cyclophosphamide and autologous stem cell transplantation'. Complete remission sounds impressive but but is misleading if you read the abstract - "In March 2001, stem cell mobilization chemotherapy with cyclophosphamide was performed. It induced an endoscopic remission for 9 months, which was maintained on azathioprine and corticosteroids. After relapse, in March 2002, high-dose chemotherapy with cyclophosphamide and reinfusion of T-cell-depleted autologous peripheral CD34+ blood stem cells were performed. This led to a complete clinical, endoscopical and histological remission for 9 months without any treatment. Thereafter, endoscopy showed initial aphthous lesions with minimal histological signs of inflammation. The patient is asymptomatic, but low-dose prednisolone and methotrexate are prophylactically given." That doesn't sound like complete remission to me.

Another example - 'Long-term follow-up of autologous hematopoietic stem cell transplantation for severe refractory Crohn's disease' in the Journal of Crohn's and Colitis. The paper reports three case studies followed up over 4 - 6 years. From the abstract - "Now, 5 and 6 years post-transplantation, these patients are in remission under treatment." Thats sounds impressive ... until you actually read the article. Patient 1 - Developed gastric ulcers and abdominal pain 6 months after treatment and after 12 months started an immunosuppressant. Now on a TNF inhibitor and "only sporadically vomits following meals". Patient 2 - Back on 6MP and TNF inhibitor 6 months after treatment and developed colitis 5 years later. Patient 3 - Only completed the mobilization phase of procedure, then had a severe relapse 2 years later. Currently active disease despite treatment with a TNF inhibitor and steroids.

In the future there may be improvements to the procedure and it could indeed end up being a curative treatment for the majority of patients. At the moment we can say that whilst it is a highly effective treatment for some people it is not a cure for the vast majority of patients.