I've recently been diagnosed with Polymyositis. I'm due to see the rheumatologist for the first time and not sure what to expect. My hope for a treatment plan so I can start to feel a bit more human😃

12 Replies

  • Hi VonnieD

    Hope your not feeling too poorly and you get the right treatment put in place


  • Thank you, not feeling brilliant at the moment everything hurts and I wake with a swollen face most mornings. Looking forward to getting sorted.

  • I only got diagnosed in September after a long 18 months and dealing with hashimotos also. Tried mycophenolate which I couldn’t tolerate so started on Azathioprine. So fingers crossed although I’ve been warned if it works it could take 12 months before I feel better. So be prepared there’s no quick fix for us. But we have to keep smiling at least we have each other for support

  • Hi Bev, I think I may have had this for a couple of years at least. I kept going to my doctor as had difficulty breathing and feeling really tired all the time. I used to tell her that I felt as though I was walking through custard. The breathing worried me as I had breast cancer in 2008 and thought it had come back, every bit of me seemed to hurt. I ended up in A&E in September with a large embolism on my left lung. Whilst on the respiratory ward the consultant noticed discoloration on my forehead and a rash across my cheeks my face was also quite swollen. I've been off work since then, which I think a couple of my colleagues are struggling with. I think they are expecting me back once I've seen the rheumatologist, some days I can't even dress myself properly. Sorry to have blurted this all on you. I think because you look ok people find it difficult to understand how bad you really feel. I do try to keep smiling😃

  • No it’s fine I’m in the same boat. I’ve had this at least 3/4 years if not longer. It’s got very bad recently and finally and mri confirmed it so I was right. My lungs are affected too. I’ve not been able to work properly for the last 18 months but decided in April enough was enough and stopped working. I got PIP in June and just gone on full time benefits now. It’s hard but I felt I’ve had no choice and need to put myself and my health first. My daughter who’s 17 is my Carer.

    Have you had a lung function test? I hope you get in to see your rhuemy ASAP. If not maybe your GP could do an urgent referral help speed things up? X

  • My appointment is on 6th December so not too long to wait. My mum came to stay with me last week she moves about quicker than I do and she's 81 with a walking stick lol. I've had a lung function test plus CT scans, my left lung doesn't fully inflate. I've also got to see occy health really scared about finances, I go to half pay in March, fearful of the benefit system too

  • Get as much medical evidence diagnoses tests results etc and apply for PIP it’s a huge help and opens up a lot of other help and benefits for you also.

    Try not to worry stress is a huge factor. I have terrible tremors due to nerve damage from the Myositis so I’ve been on Gabapentin it’s a huge help. Not much helps with my pain or breathing but staying calm rest and heat so lots of hot baths.

    My best advice is the right treatment for you will take time. So prepare get the help you need in place ASAP so you can just focus on yourself. Occy health should understand and know it’s a chronic lifelong disease and affect organs such as your heart and lungs. There’s no quick fix and you need to take as much time off as necessary without the pressure or stress from work adding to your worries x

  • Thank you for the advice, that's really helpful. I will certainly ask my doctor for the report she got from Southampton. I'm not very good in a bath, I haven't got the strength to get myself out so it lots of hot showers 😃

  • Yes I understand, I’m very weak but I’m lucky I have my daughter to help lift me. If it helps contact your local social services they’ve come and assessed me and put equipment in my home to help me. They’ve been a huge help and the report is great evidence of my capabilities in my home :)

  • Hi Vonnie, I hope all goes well for you and that appropriate medication is prescribed and helps with the symptoms. Sending you me Best Wishes, Kate

  • Thank you, it's taken a while to get to this point, been feeling tired, unwell and breathless, everything just hurts.

  • Please see my previous post with advice on claiming PIP, it worked for me. Good luck.