Worsening Scleroderma

[160376]

Just diagnosed with Scleroderma I just wanted to know does it get worse over time

[Mylreaclairelee]

Mine definitely is getting worse. I have been diagnosed since 2013

[160376 in reply to Mylreaclairelee]

I am just waiting to have my heart and lungs redone I have M.E. and Fibromyalgia as well I have the Raynauds for over two years was hoping it did not get any worse than it was when diagnosed thanks for your reply

[Mylreaclairelee in reply to 160376]

Yes I have ME which is just the worst thing. Wish I had energy.

[Sanmateogirl107 in reply to 160376]

probiotics, tumerick and peppper are great ask about methotrexate. amlodipine 10mg can help slindelifil also can help pt for hands, paraffin wax hope that help julie

[trunchalobesity]

It can get worse over time but the symptoms can also be managed effectively with the right specialist care.

Try to be referred to a specialist centre such as the Royal Free.

Drugs are improving all the time. My lung function has improved since being on mycophenolate a new drug that wasn’t around when I was diagnosed but I’ve now been on for several years.

The main thing is to be positive x

[KatieAnna]

Hi, I remember asking the same question 16 years ago when I was first diagnosed after having RS for a year. I was told that everyone is different and just to wait for symptoms that would be addressed as required. I have gradually grown more symptomatic over the years, but every step has been managed sympathetically with information, drugs, referrals to different specialists, some surgery and a sacral nerve stimulator for bowel problems. I have less power and energy but by pacing myself over time I have grown to accept and cope with the disease. This site has been great but wasn't here at the beginning. My rheumatologist is excellent and the NHS has been there every step of the way. Good luck with getting all the help you need. X

[160376]

Thanks every one for your helpful replies

[hunkyd0ry]

One generally says that auto-immune diseases generally settle within approx 5 years.

I was diagnosed about 3 years ago. My SSc got worse, but then improved slightly again. Last winter was definitely not as bad as the one before. Although I am still fairly new and symptoms differ in every individual case, I am keeping my puffy fingers crossed that my SSc is settling at the current level.

In any case... look after yourself, stay positive and don't assume the worst.

[PJSammy]

depends ... I was diagnosed 20 years ago with systemic and my rheumatologist at the time told me the very severe quick onset of symptoms (including organ involvement) often improves within the first year. He was right in my case - my symptoms are not nearly as bad as they were when I was diagnosed - mainly finger ulcers and GI Tract issues, all manageable .

Hope you too experience improvement.