Scleroderma

[Milliemoozie]

Hi I was told by the rheumatologist I have scleroderma systemic sclerosis waiting to have CT mri scan etc. test on my lungs and heart, also a chance my non hodgkin's has returned to after many years remission are they linked in anyway?? Only on zapain and naproxen till they get all the test done, last 2 nights been in tremendous pain that tablets doing nothing any one recommends anything else ?? Thanks.

[Mylreaclairelee]

My mum had non hodgkin's and I have read that it can be linked. I too have systemic sclerosis.

[Milliemoozie in reply to Mylreaclairelee]

Are you having treatment for it as I've not started any yet ??

[Mylreaclairelee in reply to Milliemoozie]

No I decided to try and not go down that route. I don't really like taking medications. I only take iron and omeprazole. Seems to be so many side effects with the drugs. But that's just how I decided to deal with it.

[MissusTee]

I have butec buprenorphine patches for pain, I find them fairly effective with the hydroxychloroquine.

[homeat42]

Number 1: take Prednisolone at least 10mg

2: start on high dose vitamin D3 (at least 1000mg)

Expect to be depressed, it goes with the condition.

Expect to be diagnosed with Systemic Sclerosis at a later date.

Our experts and Consultants are our saviours, but allow them to change the diagnosis. Question the drugs they want you to take ( but only if you have done your in depth homework on those drugs)

I said no to a drug offered at extra expense to the NHS; and found that it would have opened me up to the Caronavirus 19.

Help your GP and Consultant by making yourself aware; help them.

John