Newly Diagnosed

[Cubbikins]

After suffering with Raynaud’s for a couple of years I finally saw a rheumatologist about 6 weeks ago. Blood tests reveal that I am anticentromere antibody positive with Systemic Sclerosis, which I understand used to be called CREST Syndrome. She has organised a whole host of further tests, bloods, X-rays, heart and lung function. I see her again in 6 months but she will keep me informed of the tests as when she gets the results.

She has put me on Hydroxychloroquine for the fatigue, Nifedipine for the Raynaud’s and eye drops. She thinks I have an overlap of Sjogrens as I have very dry irritated eyes and dry mouth.

I had never heard of this autoimmune disease before I was diagnosed, my GP thought I might have had Lupus due the the fatigue, so it’s a steep learning curve. The Hydroxychloroquine 400mg a day has really helped with the fatigue. It’s only over the last couple of weeks that I realise how badly I was affected by it.

So off to watch the 2nd half of Liverpool v Paris Saint-Germain. COYR!! ⚽️

[Hidden]

Welcome to the gang! It sounds as if you are in good hands.

[Cubbikins in reply to Hidden]

Thank you Crenellated.

[Lupiknits]

A welcome from me too! It sounds as though we've been through similar circumstances, although the nifedipine wasn't suitable. I have low blood pressure at the best of times and nearly hit the deck more than once! The only parts they warmed up were my nose which turned boozer's red and my shins.

You'll find that autoimmune disorders like to party, so many of us have a mixture of them.

[Cubbikins in reply to Lupiknits]

Hi Lupiknits. Thanks for your reply. I have not started the Nifedipine yet as Rheumatologist said to wait until at least October or the weather changes drastically and starts to get colder. So will wait to see how I fare with them. X

[GGhere]

Hello Cubbikins, pleased to meet you. Welcome to the mysteries of systemic sclerosis. I too was prescribed hydroxychloroquine and have been taking it for about three/four years now since I was first diagnosed without any side effects. I'm glad it's working for you too as some people here have found they cannot tolerate it. I read that it's one of the older immune system suppressants used for this disease and some consultants prefer it because it has the least side effects. Hope all your forthcoming tests prove helpful - it does seem like an endless series of tests and hospital visit in the beginning but I'm sure you'll get through it all. Best of luck and let us know how you get on.

[Cubbikins in reply to GGhere]

Hi Betsie. Thank you for your reply and yes it does feel like endless hospital/ GP visits and tests. However I’m glad the hydroxychloroquine is working as I can’t believe how much more energy I have now. I feel totally transformed! X

[elprof7557]

Cheers! Are you a male or a female? Plus, how old are you?I'm a 61 y-o male and was diagnosed with scleroderma 7 years ago after personally noticing that I had Raynaud's.For the time being I have scleroderma in a mild form ( I take Nifedipine ) but nonetheless I'm obliged to take the tests you mentioned twice yearly.Keep well.

[Cubbikins in reply to elprof7557]

Hi elprof7557. - I’m 63 yo female. Not started the Nifedipine yet. I started feeling really tired a few years ago which was put down to ‘depression’ by my GP for some reason. About 2 years ago I started getting Raynaud’s and after tests this year, found I have Systemic Sclerosis. X

[Bec9680]

I would like to share info with you that not a lot of people are aware of yet. You should check out this website. roadback.org.

They’re finding out that a lot of these so called autoimmune diseases are caused from a mycoplasma infection. I have systemic scleroderma and I found a doctor on that website that did a mycoplasma test & sure enough I was positive. I have been taking antibiotic therapy treatment for about 2 months & already slowly seeing my symptoms go away! 😊

There are lots of success stories on that website. God bless.

[Cubbikins in reply to Bec9680]

Hi Bec9680. Thank for taking the time to reply I will check out the link in your post. X

[Hidden in reply to Cubbikins]

Hi there. I don’t so far have systemic sclerosis - but I am a bit younger than you and do have certain pointers plus Raynaud’s and quite severe Sjögren’s. My ANA is positive and I was diagnosed with Sjögren’s by lip biopsy and symptoms. It is also a systemic autoimmune disease and can manifest in many ways - most commonly in dry eyes and mouth but the dryness can affect the entire system and cause glandular problems and autonomic dysfunction problems for some. Fatigue is one of the most common symptoms and Hydroxycoraquine is the gold standard first line treatment for Sjögren’s and Lupus..

Unfortunately for me it gave me anaphylaxis after a very good initial response. I also had to stop Nifediipine for reasons of side effect but I’m particularly prone to these. Anyway welcome and hope both these meds make a big difference for you. X