Pioneer

[positivedaybyday]

I had stem cell treatment May 2018 as my condition was not being controlled by Microphenolate & was progressing very aggressively. My skin score was up to 48 pre transplant!

I had to undergo strict tests beforehand to ensure my body could cope with the intense treatment. Luckily I passed.

Month on month I'm improving & now I'm starting to get my life back. It's an unknown, so at times its like living on a tight rope as there are so few of us who have had the treatment.

Being positive, listening to my body & setting goals has really helped me.

[Hidden]

Wow congratulations for getting through all that I know it’s very risky. Does the transplant reset the immune system or do you always have ssc

[positivedaybyday in reply to Hidden]

Yes, it resets your system though the long term benefits are unknown as it's a new realm for system sclerosis. The treatment has been successful in MS so there are venturing in to other diseases.

My skin score is now 27 so is heading in the right direction. I was informed I had a 10% chance of dying through the treatment but I turned that into a positive of a 90% chance of surviving. It was very gruelling but I would make the same decision to get where I am now. I do have damage caused by the onset of the disease, a lot of discolouration in my legs & feet due to restricted blood flow and ribbed skin as it starts to get softer. I had argon therapy shortly after being diagnosed as I had a clump of bleeding cells in my stomach. I was completely unaware as I had no pain but SO much fatigue & I was anaemic. Hopefully over time my body may look better, if not I can always cover up! I'm not likely to swan around in my bikinis now!!! I take each day as a bonus & have learnt to listen to my body & rest when necessary.

I remember when my consultant first told me about the disease progression & how the skin tightened. I asked her " OK, so what happens if the drugs don't control the disease". Her answer nearly floored me as she replied " You will die!". They measure 17 areas of your body the worst score for each being 3. As in my 1st post I had reached 48 so without this treatment I really don't think I would be here. Thank goodness for miracles!

How long have you had Systemic Sclerosis? It's unbelievable what it does to your body & mind! Xxxx

[Hidden in reply to positivedaybyday]

I’ve had it about 6 years now I think, I think I’m very lucky with progression in that I’ve only had a couple of small patches of thickened skin and the biggest problem is fatigue/limb pain and that’s more in winter months. I work full time and do a lot of sport so far it’s not stopped me. Why on Earth not go out in your bikini! I am so happy for you that things are turning around xx

[positivedaybyday in reply to Hidden]

It's so good to hear from someone else who's had the treatment. I did ask my post transplant team on Tues if there was any group of like minded people, however they mainly deal with cancer patients so I was "unique" to them! Sounds like you have your life back albeit with a few issues. Yes your right maybe the bikini will come out at some stage!!! Xxxx

[tanya1981]

Well done, girl!

Staying positive and optimistic about your future is sometimes half the battle..

[positivedaybyday in reply to tanya1981]

Thank- you!! It's so reassuring when you have support from this site as we often find ourselves with endless questions. Xxx