Stem Cell Therapy

[LotusCarlton]

Anyone here used or researched Stem Cell Therapy?

I started looking at it only yesterday so haven't booked a flight to Panama yet! However, it does seem to have provided effective results for a number of patients with Auto Immune diseases.

I was diagnosed just over a year ago but was suffering for 6 months prior to diagnosis, My symptoms are being treated with Mycophenolate and steroids which has brought about some improvement but my stamina and strength as well as cognitive function are severely impaired.

I'd welcome hearing the views and experience of others.

Richard

[OldTed60]

I think it’s very interesting but, from what I’ve gathered (not a great deal), eligibility depends on how severe (often diffuse) and active our systemic sclerosis is because it carries risks and only a few hospitals in UK can offer it. So far I think it’s only been given to a younger SSc cohort so I’m guessing it takes stamina to cope and lots of testing before during and after. I’m not sure if all of this is right at all but I’d discounted it for me on this basis and have thought of stem cell therapy as a very hopeful treatment for future generations. Please feel free to put me straight if this is not the case as I really don’t know that much about it. I’m on mycophenolate and have recently started Rituximab. I’m not sure yet but I think Rituximab may be helping to improve my stamina because my daily step count is improving each week.

[positivedaybyday]

Hi,I was lucky enough to have stem cell treatment in 2018 in the UK.

I was diagnosed in June 2017 with aggressive Diffuse Systemic Sclerosis. Microphenolate did not prevent the rapid news of my disease.

I was offered 2 options:

1. Continue with Micrphenolate & hope at some stage it kicked in.

2. Be referred as a stem cell candidate as my disease though aggressive was in the early stages with no organ damage.

I took the offer of stem cell treatment. I had to undergo another series of tests to ensure my body could cope with this intensive treatment.

Luckily I passed.

It was gruelling but I survived!!

Now it's more than 6 years on. I'm hardly on any medication & my skin is back to normal.

I was 64 at the time of my treatment.

Ask your Consultant if this is an option for you.

For me it's been a miracle but for a few others not as good.

Please come back to me if you need any further information.

[LotusCarlton in reply to positivedaybyday]

Wow, quite a story. I'll ask my rheumatologist when I see her but I doubt my condition would be considered serious enough, currently looking at private.

[flamgirl]

hello Lotus

Yes I started taking mycophenolate for a couple of weeks now gradually building up to 4 tablets a day each 500 gms. So far so good and am having regular blood tests and follow up appointments in both rheumatology and respiratory. I have fibrosis of the lungs so hopefully this medication will halt progress of the disease. I also have hypertrophic cardiomyopathy (HOCM) which is also down to my sceleroderma diagnosis in 2010. As long as I keep getting monitored by health professionals is important, ie breathing tests, echocardiogram etc! Good luck Lotus. This forum was a big help to me before I started taking mycophenolate.!