Lupus and polymyositis

[Tulipano]

Just saw my consultant and on top of Lupus i have muscles autoimmune disease called polymyasosis. Does anyone else have it too? The Dr may do a muscle biopsy too. I am currently taking hydroxychloroquine and I will start Mycophenolate and another tablet to go with it tomorrow. I am so scared and worried 😥

[PMRpro]

Do you mean polymyositis?

nhs.uk/conditions/myositis/...

myositis.org.uk/

[Tulipano in reply to PMRpro]

Yes sorry. I do

[PMRpro in reply to Tulipano]

No need to apologise - but have a read of the links. It isn't the end of the world - as MEW53 says.

[MEW53]

Tulipano,

I think you mean Polymyositis, which I have with a Scleroderma overlap and I am on mycophenolate twice a day as well as steroids and a few other drugs. Don’t worry about it, just take things as they come. It may take up to 3 months to work and you may feel unwell on the way to getting used to it. I am monitored monthly for bloods and urine and I avoid the sun.

Read the link PMRpro has posted, it has some good information, I’ve had this for 3 years now.

Good luck😀

[Tulipano in reply to MEW53]

Thank you I also need to lose weight. Do you have any tips? X

[MEW53]

Tulipano,

Can’t give you any tips on losing weight, I was a little overweight before I got ill but I lost 5 stone when I got ill, put a stone back on now.

One thing you need to remember is that you need protein to build up muscle strength, so eggs, Fish, etc.. you need to keep your muscles going otherwise you’ll lose strength. I walk up my road with a stick everyday to keep my muscle strength.

Hope this helps.