Just been diagnosed

[Suntrap12]

Hi I got diagnosed with myosotis and polymyositis 2 days ago. I’ve had symptoms for 2 years Iam scared I don’t know what’s a head for me. Started 50mg of steroids today. I have heavy legs and the lining of my lungs are inflamed. Can anyone give me hope.

[Hidden]

Hi Suntrap. It’s always scary to get the diagnosis. I was diagnosed 8 years ago with Anti Jo Polymyositis. I started out on 60 mgs prednisone and have nit needed them since 2013. I still take Azathioprine daily. I am well and stable with no flares in eight years. Thus us a marathon, it’s never going to be a sprint. You will need time and patience, the drugs used can take up to 6/8 months to kick in and do the job although you will feel better fairly quickly taking the prednisone. At some point with your doctors permission you need to start exercise, in the neantine walk as much as you can building up to at Keats 10.000 steps daily. Exercise is almost as important as the drugs. You will get there. Don’t be frightened. Best wishes, Mary

[Tunabird in reply to Hidden]

May l ask how much Azathioprine you are on? I am on 100mg....tried weaning off but got many symptoms back.

[Hidden in reply to Tunabird]

Hi Tunabird. I take 100 mgs Daily. After eight years the Rheumatologist put it down to 75 mgs. After about three months pain came back, CKs began to rise. Back on the 100mgs and I am fine again, I expect to be taking it firever now to suppress the Anti Jo,

[Tunabird in reply to Hidden]

Thank you...l wish you well. I think I will stay on a hundred I'm not worried about weaning for a while.

[Lucy_4]

Hello, I was diagnosed last year with Dermatomyositis and felt hopeless too. I can promise you that it’ll pass and you will start to feel better , but for now listen to your body and rest, but nvr quit! I hope you are having a good day!

[MEW53]

Hi Suntrap12,

I was diagnosed with polymyositis with a Scleroderma overlap 4 years ago and I was very early in the beginning and it took ages to get diagnosed. The steroids will help, take each day as it comes and when you are allowed by the doctors try and do some exercise to get the muscles working again.

If you feel tired rest, best wishes😀

[Lisalou19 in reply to MEW53]

I am showing overlap scleroderma. That’s quite ironic x

[MEW53 in reply to Lisalou19]

Another one with it, not many of us out there😀

[hopegalore20]

Hi Suntrap12, you have had a long wait for a diagnosis. All going well now, you will be put on a Treatment Plan that will see your health improve day by day. I have Dermatomyositis, I began with 60mg of Prednisone a day, combined with an Immue Suppresant and Bone Medication and a combination of Steroid Creams& Lotion for Scalp and Body areas..

Treatment also includes IVIG and Truxima Infusions. Along with various scans.

Hopefully, your Doctor or Consultants will find the must suitable treatment path for you.

Never give up, always have hope.

Take Care.

Best of Luck.

[Lucy_4]

Hello, I hope you’re feeling better today and I know exactly how you’re feeling. When I was diagnosed last year I was going through the same with my legs and lunges, but once the medication started working I started feeling so much better. You have to allow it to start working and once it does get out and walk and tell your self you can and will make it through this difficult time.

[Suntrap12]

Hi Lucy got told yesterday that it’s ASS I have not really feeling that unwell.