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Scleroderma & Raynaud's UK (SRUK)

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I'm new here

Scooterboy63
Scooterboy63

Hello everyone, new on here and good to be in the company of folk with the same conditions, I’ve already read some very interesting stuff. I'm a 55 year old male & my first symptom was a cold finger in the summer 2015 followed by skin issues, I was feeling pretty ill by the time I was diagnosed in December 2015 with Secondary Raynaud’s. After many tests & hospital visits etc. in July 2016 with both Localised Skin Scleroderma (Morphoea) & Limited Systemic Scleroderma (Localised Cutaneous Systemic Sclerosis (sclerodactyly & nail fold changes). I’ve been told having both is unusual? I take Mycophenolate, Amlodipine, and yearly Iloprost Infusion. Also I recently finished taking Prednisolone.

6 Replies

Scooterboy63,

Welcome your in good hands here.

I have systemic sclerosis (Scleroderma), I take mycophenolate and prednisolone and a few other things too, have Raynauds. I was diagnosed 4 years ago it all came on quite quickly in the hands and the skin tightened.

You’ll find everyone very helpful here.😀

Scooterboy63
Scooterboy63 in reply to MEW53

Thanks MEW53 for the welcome!

Pleased to meet you Scooterboy63 - pull up a chair. I have systemic sclerosis which involves Raynaud's and scleroderma - not much fun is it? But we help each along in this group. I take hydroxychloroquine (amongst loads of other stuff) an immune suppressant. My consultant always says, we can't cure you but we can manage it. So we all meet up here to do a bit of "managing". It's time for us Raynaud's people to face the winter battle - I'm already having trouble with the lower temperatures. Keep warm everyone.

Scooterboy63
Scooterboy63 in reply to Betsie

Thanks for the welcome Betsie, I was offered hydroxychloroquine at my last clinic to help with fatigue/tiredness? I refused it because I'd never heard it mentioned before, plus the possible side effects? I'm already taking an immunosuppressant in mycophenolate.

Hi there. It’s such a lot to take in, I’m 4 years since diagnosed and still learning about this strange illness. There’s good days and bad but a positive mind when you can really helps and all the advise from this site too. I take hydroxychloroquine and have had no side effects from this drug. Keep warm 😁

I think I've said this before - when I was first diagnosed consultant prescribed hydroxychloroquine. I've been taking it for about 4 years or so now. I did a bit of research, Googling, etc and I read that hydroxychloroquine is one of the older drugs used as an immune suppressant but is considered to have the least side effects.

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