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[Mb1234]

Hi I'm a 31 year old type 1 diabetic. I was diagnosed with Myositis last week and have been on 20mg preds for 4 weeks while awaiting blood results. Feeling better but not back to normal yet. I've dropped to 10mg of preds now for 6 weeks and haven't been feeling the same since I did this. My symptoms started last year and I was a query PMR but consultant ruled this out due to my age. He diagnosed me with arthritis without as much as an MRI and prescribed meds for 18 months. I opted not to start these and instead get a 2nd opinion. My symptoms vanished then for 2 months and I though I was cured. In Feb it came back worse than before with CRP 162 and ESR 82 and I'm since out of work but so happy to have a diagnosis now ☺

[RajSangha]

Really sorry to hear about your struggle MB you know you are not alone and welcome, I was diagnosed with pm in jan 2017 but struggled with it for many years now I have a consultant looking after me things have started improving.

[Mb1234 in reply to RajSangha]

Thank you. That's good to hear. You must have been going out of your mind to get a diagnosis all that time. It's so hard for people to understand when you can't name it. Glad you're feeling better!

[Jo-Goode Administrator]

Welcome!

Sorry you have a diagnosis of Myositis. I was diagnosed 23 years ago, but in this time had 13 years medication free until I relapsed a few years ago.

I would suggest attending a specialist Myositis clinic or have them oversee your care, particularly because of your diabetes as alternatives to steroids should be used as soon as possible. If you let me know where you live I can advise of the nearest myositis specialists.

Jo

[Mb1234 in reply to Jo-Goode]

Hi Jo. Many thanks for your reply. I live in Cork, Ireland. Sorry to hear about your relapse. Can I ask do you suffer from an elevated pulse when you have a flare up?

[Jo-Goode Administrator in reply to Mb1234]

Sorry, there are only Myositis specialist in England, so I messaged Angela via facebook to contact you.

I have had issues with a elevated pulse in the past because of heart issues related to the Myositis.

[Mb1234 in reply to Jo-Goode]

Thanks a million for that.

[Aingeal]

Hi MB1234

I see youre from Cork. I live in Kerry.

I was diagnosed with dm over 3 years ago. I attend Rheumathologist Dr Mahommed Haroon in university hospital Kerry. I attend him privately because his public waiting list is about a year long. I believe Dr Mary Harvey Rheumathologist in CUH is very good but it's difficult to get an appointment with her. Ìf I could give you one bit of advice it is to educate yourself as much as you can about your illness, because most Dr's will not have heard of it.

This is my email if you want to get in touch to talk... [e-mail] I found it makes a huge difference to talk to someone who knows and understands what you are going through.

[Mb1234]

Thank you very much. That is very good of you. I'm currently attending an Endocrinologist in the Mater Private in Cork. It's good to hear other people's experiences and to know there are other people out there dealing with this!

[Aingeal in reply to Mb1234]

I have to go out now but message me anytime you want and I'll get back to you when I get home 😊

[Mb1234 in reply to Aingeal]

Thank you

[Aingeal]

Hi. I'm sorry but I gave you the wrong name of the Rheumathologist yesterday, her name is Sinead Harney. My Rheumathologist worked under her for a number of years in cork before coming to kerry. I hope you don't have to wait too long to get answers. It's so important that the right treatment is started early.

[Daisy1991]

Hi mb1234

I know your post was a while ago but can you please tell me how they finally came to your diagnosis. Was it rasied CK levels, scan of nerve tests etc.

I was thought to have PMR was put on Prednisone 15mg which helped me.

Its a long story but was on them a year before being sent to a rhumatologist it is 8 years on and still not got a firm diagnosis of anything. My rhumy suspects sjorgrens or lupus but my symptoms on onset were classic polymyositis. Struggled get up from seated position. If I got down on the floor I definitely couldn't get up unaided. Couldn't get in and out of bath unaided. Severely struggled to climb stairs and get out of bed. I couldn't even lift the quilt up with my legs they were so weak. I had to lift my leg into the car because of weakness. I was stiff everywhere and had muscle aching everywhere. It was painful to be touched.

My CK levels were within normal range but we're only tested when I went to the doctor's with mild aching. When I got severe they weren't tested. I was just put on steroids because my gp suspected PMR. My rhumy tested my CK levels when I first went to see him but I was on steroids at the time 10mg. Both my ESR and CRP with really high.

I was on steroids for 4 years. Every time they were dropped below 10mg my symptoms became worse again and my ESR and CRP became raised again.

I have since been taken off steriods and I am now on hydroychloroquine and I feel well most of the time.