stem cell therapy for Sceleredoma

[Rups123456]

Hi has anyone explored this option for systemic Sceleredoma?

[Midgebite21]

Yes, I discussed it with my rheumatologist (just out of interest) she said for me the risks from treatment outweighed my disease progress. It is quite commonly used now in MS but it seems difficult to get onto any program under the NHS. There seems to be a lot of candidates go privately over to Mexico and (prior to the Ukrainian war) Moscow. I’m on a Facebook page ‘UK HSCT for MS and Autoimmune Diseases’, lots of information on that page especially with the files and questions section. You may find it useful for background.

[positivedaybyday]

Hi Rups,I'd advise speaking to your Consultant as it is possible, but it rarely is an option.

I was extremely lucky to have this treatment in 2018. Yes, there was a 10% change of not surviving & it was an invasive treatment.

I had the worst of the worst case of Acute Diffuse Cutaneous Systemic Sclerosis. My condition progressed so fast & Mycrophenolate was not working for me.

I was in the early stages of the disease with no organ damage. My Rodan skin score had gone from 21 to 48 in four months. The highest skin score is 51 so I was critical.

I had to undergo numerous tests at The Royal Hallamshire Hospital at Sheffield to ensure my body could cope with the treatment. I was 63 at the time & had always led a healthy life. Before the disease struck I swam, walked for miles in the mountains with my dogs & enjoyed horse riding.

Thankfully I passed the difficult tests & started my perilous journey.

I remained positive at all times as this is SO important.

I spent a few days in hospital where I had one dose of Chemotherapy before the hospital harvested new baby cells in my body that hadn't had a chance to become rogue.

No hair loss at this stage!

A month later I returned to the hospital where I spent 3 weeks in an isolated room & underwent the treatment.

I had 5 consecutive days of Chemotherapy.

On the 6th day I had my new baby cells placed back in my body & waited.

I lost all my hair & felt very unwell in this period.

However I fought hard & with the fantastic team behind me I came through the treatment.

It was scary but I focused on each day at a time.

It's now nearly 5 years since & I feel great. I have been able to ween off the steroids & most of my medication. I only take a few tablets each day which is fantastic considering previously I was on about 20 tablets each day.

When I asked the team in Sheffield how many people in the UK had undergone this treatment, they stated including me only 20 people in the last 20 years!

So you see it is a very rare option.

I wish you luck on your journey.

Xx

[Rups123456 in reply to positivedaybyday]

thank you so much for taking the time to write this. I hope your health remains strong. Thanks again x