Myositis

[Ankara]

Well on reading the other posts I do not seem the only person to have had different diagnosis. At times I have wondered whether in fact my illness has been functional!

However since seeing Sarah Mackie who has such a wonderful manner and is interested I feel more confident in the medics

So Sarah has put me through the gamut and I have osteoarthritis, she wanted me to reduce the steroids and I managed to get to 8 mgms last week and became increasingly stiffer etc.

She also requested a neurological opinion. I consulted Dr Andrew Heald on Friday who had copies of all the correspondence and within a short time diagnosed Myositis has increased the steroids to 15 mgms and has said that I will be on steroids for the rest of my life ugh

At least I know where I am and it seems I am no longer part of your supportive band and will seek pastures new.

It has been fascinating reading all your entries and I have appreciated the support of you all.

Thank you

[HeronNS]

Please drop in from time to time and let us know how things are with you. It's good to have an accurate diagnosis so hopefully you will be feeling better with the right treatment.

[Ankara in reply to HeronNS]

Gosh I’m not the only one with insomnia anyone else awake let’s party!

[Hollyseden in reply to Ankara]

I'm still awake but it's only 3 o'clock 😌 Not sure I have the energy to party though. Hope all goes well with your diagnosis and treatment of it.

[HeronNS in reply to Ankara]

Different time zone. I live in Atlantic Time Zone, four hours earlier than UK....

[Gaijin]

Having a definitive diagnosis must feel reassuring, despite it being one with no hope for remission as opposed to PMR/GCA.

Hope you keep in touch and good luck.

[Ankara]

Yes it is good to have a diagnosis already increasing the steroids have made a difference this am. Now I’ll just need to get used to and learn to manage. I believe exercise then rest so ballet not a good look but fun, if you really want to laugh come to Wass panto,swimming, walking and chair aerobics lots of snoozing and lots of fun so what’s housework..oh and more snoozing..take care you all and enjoy the next week or two..

[PMRpro Ambassador]

i think a lot of the problems you may encounter will be similar to our - certainly in regard to living with pred at least! We don't mind what your dx is - if you have a problem we know something about dealing with we'll reply. And YOU may be able to help when someone's symptoms sound like yours rather than PMR. It does all work together. Of course - if the GP had done a proper set of bloods originally they would have known far sooner: myositis causes a raised creatine kinase, PMR doesn't and the CK blood test should always be included in the rule in/out diagnosis.

And I'm nosey - do tell me more about how you are to be managed. I met someone on holiday a few years ago with dermatomyositis who was on 10mg of pred for life so know a bit .

However - well done Sarah and the neuro. I do wish everyone could have a Sarah or a Rod in their medical team!!!

PS - Heron cheats, she's in Canada which is why she does the UK nightshift

[Ankara in reply to PMRpro]

You are all so kind not sure what happens next need to see the report my GP etc. It has certainly pushed a few buttons as I thought my illness was functional from the hospital attitude

My ex spent our life together making out I was barking in fact he was a surgeon who was sacked but not without trying to influence his colleagues the last thing he said to me is I am going to destroy you ugh..

Of course if I can be a resource, support to anyone else I would be delighted just let me get the T shirt printed..it’s in process

Wonderful sunset here tonight all the best for the season ahead..

[PMRpro Ambassador in reply to Ankara]

Sounds like a rather typical surgeon... Sounds a lovely person! NOT...

I take it you have seen this:

myositis.org/learn-about-my...

and this site is usually extremely good and reliable:

healthline.com/health/myositis

Where are you to have a lovely sunset?

[Ankara in reply to PMRpro]

North Yorks very grateful will follow up

[PMRpro Ambassador in reply to Ankara]

The weather improved a bit then? My daughter is a paramedic in Whitby.

[Ankara]

Would send you the photo from the kitchen window but don’t know how!

[PMRpro Ambassador in reply to Ankara]

Join the clan - taking a photo defeats me, never mind posting one!!!

[Ankara]

I live near Helmsley so not far from Whitby

[Rugger]

We shall miss you at the meet-ups, but you'll always be welcome. It's good to hear you have a proper diagnosis at last, that validates how you've been feeling. No medic should make a patient feel it's 'all in their mind' when it isn't - worse still, someone who is supposed to be their partner - no wonder he's your 'ex' and sacked too!

Hope the panto goes well - would love to see you in a tutu!

Break a leg!

[PMRpro Ambassador]

Thought you might be intersted in this article that popped up in my inbox today:

medpagetoday.com/rheumatolo...

That link looks horrendous! The title is "For Myositis: An Old, Costly Drug?

Significant steroid-sparing effects seen with Acthar in refractory patients"

and I thought it might be worth keeping at the back of your mind, just in case.

[Trixiechamp]

Hi all, hope you have all had a wonderful Christmas! I’ve just checked in to see how everyone is doing and it seems that Ankara is in the exact same situation as me!?? My diagnosis has gone from PMR to GCA to ‘its all in your head’, then Takayasu’s Arteritis now finally some kind of Polymyositis diagnosed by Rod Hughes via PET scan that showed chronic inflammation of the muscles, particularly the shoulders, back and hips.

I have to say I have not asked too many questions as I now feel like I am finally being treated after being left in limbo for six months and I have been put on 15mg Methotrexate once a week and trying to reduce the steroids (currently on 20/15mg alternate days for 2 weeks until I see Dr Hughes again to reassess. Still having quite a bit of pain (can’t walk for any distance) but tbh the steroids weren’t making any difference at 40 or 30mg except giving me cushings type symptoms so reduction is not making much difference pain wise either. Have had to fend off this cold bug a few times over the past month so not sure if the MTX is making any difference (on week 7). One thing that does keep popping up is that this disease is not curable, is that true? I didn’t ask the consultant stupidly lol x sorry to hijack the thread, just trying to find out a bit more?

Tanya AKA Trixiechamp x

[PMRpro Ambassador in reply to Trixiechamp]

PMR isn't "curable" either - just it tends to burn out for about 95% of patients eventually.

I thought pred was used for polymyositis

[PMRpro Ambassador in reply to PMRpro]

PS - see my reply to Ankara below

[Ankara]

I have been told the only treatment is steroids have upped to 12 from down to 8 may need to go up. Will now wait to see Sarah Mackie and discuss management still getting the head around it..all...everything slow at this time of year. Rotten nights with discomfort but better by this time of day..

[PMRpro Ambassador in reply to Ankara]

I was about to post this link - and my daughter phoned!

myositis.org/learn-about-my...

They say somewhere on the site that it is now being realised that patients differ a lot - and that no one treatment works for everyone.

What I do find interesting is that my 2 hero rheumies are the ones who spotted the diagnosis...

[Ankara in reply to PMRpro]

Ah Sarah requested a neurological opinion (Andrew Heald) who has made the diagnosis report needs to back to Sarah

[PMRpro Ambassador in reply to Ankara]

Sorry - what I meant was that she suspected it was more complex and asked for an opinion. While others just have so much faith in their own ability that they can't accept there may be another answer...

[Ankara in reply to Ankara]

Ah quite and absolutely it’s a b......r because there is person trying retain some Mark Benjamin if not for self for the people around ...hey ho

[Trixiechamp in reply to Ankara]

I was put on MTX before the diagnosis to help try and reduce the steroids as I have had such a horrible time on them and was completely over prescribed and also help with symptoms of what Dr Hughes thought was some kind of vascular disease. So once the PET scan showed the chronic inflammation he decided that we would carry on with the same treatment for six months and then try something else if no ease in symptoms.

[Ankara]

You poor thing I was on methotrexate and on prozac to no avail some days I feel like chucking out all the pills and wonder what would happen. However it was scary to realise steroids for life. Do you find it difficult to know what is disease and what is the results of the drugs?