Blood tests

[Nionyn]

Hello. I would like guidance on what blood tests would indicate the presence of Polymyositis. Although I am not diagnosed I have similar symptoms and due to have bloods soon including CRP. Would CRP show an indicator for this illness. Thank you.

[Lisalou19]

Hello Nionyn, I recently met someone with this disease randomly through someone I know . I have suspected Dermatomyositis.

As you know these diseases are rare so it was strange to meet someone who was able to shed some light.

She was quite poorly for a while and her bloods were not showing anything, until she couldn’t get out of bed . She was lucky and was seen by a good rheumatologist, he run an anti jo-1 screening and ck levels which gave her the answers.

I don’t think these are standard bloods a doctor can order, you may need to check. If not a referral to a rheumatologist would help loads.

X

[Jo-Goode Administrator]

CRP will show inflammation elevated for various reasons including Myositis, infection, chronic disease or injury.

CK (Creatine Kinas) would be the initial blood test for Myositis, as this will indicate muscle damage when elevated (but in some Myositis cases it does not rise). It can also rise after a heart attack or after strenuous exercise (but will quickly then revert to normal levels).

ESR is another indicator for inflammation if elevated used, but not specific to Myositis

[Jo-Goode Administrator in reply to Jo-Goode]

There are few Myositis clinics and specialists around the UK, there is a list in the pinned post. If your in London Kings College have a large Myositis Clinic, led by Dr Patrick Gordon, you can ask your GP to refer you or contact Kings Private for an appointment with Dr Gordon privately.

[MEW53]

Nionyn,

Jo-Goode has given some good advice I was diagnosed with Myositis with a Scleroderma overlap all these indicators (CRP,CK,ESR) were checked and the levels were elevated when I was diagnosed, early diagnosis is so important because of its rareness. I went for an initial private rheumatology consultation in the beginning which started the process a lot sooner and then continued with the same consultant in the NHS.

[Lisalou19 in reply to MEW53]

Your reply is very interesting. My bloods have the same markers, Mysiotis and scleroderma. I have a lung function test and mri next week to check for internal issues. I also went private in the end and since 11th dec I’ve had all bloods, diagnosed and all these other tests In such a short space of time x

[MEW53 in reply to Lisalou19]

Lisalou19,

That’s quick work, it can take ages to get diagnosed cos doctors don’t see these diseases very often. I went for my 6 monthly check with my rheumatologist consultant on Wednesday and he’s pleased that I am fairly stable at the moment.

He will organise lung function, cardiology checks etc next time. Paying privately in the beginning was the best thing I did and I liked the way he said he’d follow me up on the NHS. He trained at the Royal Free Hospital which is a centre of excellence for Scleroderma.

I signed up for the monthly newsletters from the Royal Free so I can see the progress being made on research in this field, you may want to do the same.

[e-mail]

Also some information on Professor Denton who I’ve heard specialises in Scleroderma and I follow him.

royalfree.nhs.uk/services/s...

[Lisalou19 in reply to MEW53]

5 years it’s taken me to get some answers!!!! It’s been a nightmare

Thank you for your info and I’m now under the nhs at guys. Just wish it didn’t take so long to get the answers

X

[Jo-Goode Administrator in reply to Lisalou19]

Dr Gordon also has a clinic at Guys with a lung specialist

[Lisalou19 in reply to Jo-Goode]

Thank you this information. Do you have any information on how Mysiotis affects the legs? I’m not sure if I have the start of something or this will be my life. When I am feeling poorly, skin rash extremely fatigued, I can get up the stairs but my legs feel dead & heavy! This symptom seems to come and go along with swallowing difficulties

[Nionyn]

Thank you dear friends for taking the time to reply to my question. I have health concerns and have recently had 2 episodes of pleurisy. I feel so weak and tired and joint pain so severely. I will go back to my GP and await my blood results and possibly seek a referral to rheumatology. Thank you.

[Hidden]

I was diagnosed very quickly at Guys Hospital. Blood tests showed raised CK, raised CRP and raised liver enzymes. It also showed I had the Anti Jo auto antibody, treated with 60mgs prednisone daily, after a month Azathioprine was added. Referred to the lung specialist there, I have nit needed steroids since 2013. I remain well and stable on 100mgs Azathioprine. Lung function was 30% down at diagnosis, now it’s fine. Hope all goes well for you.

[Sonnenschein56 in reply to Hidden]

Hallo,

wurde auch der Bluttest wie bei mir gemacht. Habe das Original Laborbefund eingescannt .Grüße von

Sonnenschein56.

[englishe]

you must get right down to your gp ,don,t wait till you can,t even lift your hand off the couch,