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Scleroderma & Raynaud's UK (SRUK)

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Trying holistic Nutrition Approach for scleroderma

Sus22 profile image
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I was diagnosed with scleroderma last year, mainly linear and morphea. Am now under Royal Free Hospital, where I tried tacrolemus cream which didn’t work. Saw rheumatologist for 2nd time in April who straight away wanted to put me on methotrexate. As my mother in law was on this for some years and had bad side effects I was reluctant to try. Few weeks later I got a call saying they wanted to give my some steroid infusion and then mycophenolate as a maintenance but would only be very low dose. Nurse rang to tell side effects which was she said was just basic. Have had steroid infusion this week picked up prescription and was quite surprised to see how much it would be by the end of 4 weeks up to 2000mg and then the possible side effects.

I have thought before trying this drug I might investigate holistic nutrition approach to try first. Wondered if this is something anyone else has tried and if helped to control things. Thanks for any advice or help.

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Sus22
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cowhide profile image
cowhide

I'm not aware of any scientific evidence that a 'holistic nutritional approach' can help with scleroderma. Not everyone has side effects to the medication that we are prescribed and we are prescribed it for a reason! I would try the drugs first, you might get on just fine.

Sus22 profile image
Sus22 in reply to cowhide

thanks a lot for your reply and advice.

Cookiecutter76 profile image
Cookiecutter76

Hi!

As someone who has significant side effects from many over the counter medications, reacts very badly to steroids and has had a severe reaction to Azothioprine, I would say that it depends on your individual situation.

We are all very different and have different ways that the autoimmune conditions affect us and how we react to the medication. For me, I now refuse all medication as I know, from experience, that I get on better without it. I had to try it to know that though, but trying did cost me some level of function that I never got back after my reaction to the medication. It is a risk not being on medication though, if it's been suggested by your consultant.

What I eat does affect my inflammation levels and general health quite a bit and so a nutritional approach would seem sensible from my experiences. What you do about the medication is difficult though.

Best of luck whatever you decide.

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