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Scleroderma, Systemic Sclerosis with overlapping Sjogrens Syndrome, Reynauds - I`ve got them all.

Posted , 5 users are following.

john57420
john57420

I`m male, 68 and live in England, UK, and have just found this site after reading an article in one of our national newspapers.

I`ve had the above autoimmune conditions for 10 years now.

It all started off with a very sudden onset of Reynauds in my hands, then I had trouble putting my painful feet on the ground as I got out of bed. Then I got general fatigue and muscle and joint pain. I went to the doctors who made me an appointment with a Rheumatologist. He instantly said Scleroderma and Inflammatory Arthritis and issued Prednisolone steroids, the steroids had an instant effect. Took bloods and gave me a UK web address to look at everything to do with the condition.

On our next meeting he confirmed his diagnosis and made appointments for x-rays , and heart and lung function tests. he also made me an appointment to a Musculo Skeletal Consultant.

After that appointment I was the diagnosed with Systemic Sclerosis with overlapping Sjogrens Syndrome.

I had severe side effects to all the drugs I was given for the conditions so, I began an internet journey to find an alternative natural anti-inflammatory. After 6 months of trawling the internet I found a scientific paper by a Japanese medic.

The gist of it was that he tested his theory (on himself) that large doses of Vitamin D ( which has anti-inflammatory properties ) would help his condition. I followed his routine and it helped massively.

I told my Consultant what I was going to do and he backed me doing this.

10 years ago Vitamin D was very little known vitamin. Pregnant mothers were spoken to about it and as far as I know, that was about it. In this country it is never out of the newspapers or off the internet now.

My Musculo Skeletal Consultant is now issuing Vitamin D as a basic necessity to all newly diagnosed patients at her hospital department, based on my findings and usage.

I take 1000 iu daily, after the initial 6 week very high dosage, at the outset of my trial.

I do not take Calcium supplements as together, they can have heart and kidney side effects.

I must stress that, this is my own personal journey, and it may not be the one you should take.

I count myself as extremely lucky that I had the right Doctor and Consultants and Nurses looking out for me along the way.

I hope this has been of help or interest to you.

John

4 likes, 3 replies

3 Replies

  • john57420
    john57420

    Posted

    Just wanted to add that over the years; I`ve met hundreds of patients who have had wonderful results from the same drugs that were not good for me. Take the experts guidance please.

    John

  • gar43827
    gar43827 john57420

    Posted

    Hello there ,

    Got them all , i have recently been given the diagnosis of MCTD Mixed Connective Tissue Disease,

    So much on all possibble symptoms it's a slow education to get ..

    Paquaniel {sp} gave some immediate help with jointsbut the dry mouth the hands swollen burning,

    MCTD maybe check that out

  • sue73
    sue73 john57420

    Posted

    Hi John

    Nice to hear from someone in a similar situation – I am 74 and was diagnosed with limited systemic scleroderma a couple of years ago. I have had Raynauds for at least 20 years so goodness knows when the SSc actually started! I don't take any medication, don't see the point really as this condition isn't curable. But funnily enough I started vit D a couple of days ago off my own bat – I reckoned that as my innards are so compromised by the condition I am definitely not absorbing important minerals and vitamins so Vit D seems sensible in our climate.

    I am interested to know which bits of you are affected as this condition is so rare and we are all so different. I have bronchiectasis (though I wouldn't know it as my lung function is very good!!! – it just showed up on a routine CT scan), my oesophagus is damaged (again, no symptoms), Raynauds pretty bad, but worse is my guts – completely disfunctional with SIBO (small intestine bacterial overgrowth tested and diagnosed at Royal Free) so I have lost a lot of weight and find it hard to maintain the minimal weight I am now.

    Any similarity with your experience??

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