Angry Confused. Camerashy

[camerashy]

Diagnosed with GCA May 2017

Just waiting for my results of synacthen test

In the meantime my appointment with the Rhuemy was due

Just to until back track a little the endocrinologist stopped my preds (I was down to 3mg) and started me on 15 mg of hydrocortisone My PMR Simpson’s got worse. Bilateral pain in shoulders and arms Hips. Thighs etc so I thought I would continue until the results of mysynacthen test came thru.

Back to the Rhuemy today who I saw for the first time as my usual consultant was away

He is not convinced that I have GCA or PMR he has suggested that my symptoms may be due to a virus that has left me with these pains and chronic fatigue he noted my breathlessness on little exertion and now have to go for lung and heart tests

I came away utterly dumbfounded as I have been treated for GCA for nearly three years now I just don’t know who to believe I don’t care what label they give me I just want to be better I am at a loss as what to do next. Do I get a third opinion

I must note the this consultant was amazed that I have only been treated on 10mg of preds from the beginning he said that the normal dosage would be between 40/60 mg. I did question this at the beginning but was soon put in my place

I don’t feel any better than I did 3 years ago

My blood tests or always normal with the exception of twice they were raised when I got down to 1mg

Sorry for the rant😣just don’t know where to go from here

Thanks for listening x

[PMRpro Ambassador]

If your original doctor was of the opinion you had GCA/PMR then he should have managed it properly. And that isn't on 10mg pred, especially if GCA is suspected. Then it should be 40mg/day as a minimum. Did the 10mg lead to any improvement?

Because you have been so messed about it is impossible to say what it is/has been. I have also been breathless on exertion - due to the "PMR", or at elast the vasculitis part of it.

You need to go for the heart and lung tests. See what they say - and work from there.

[camerashy in reply to PMRpro]

Some improvements but not much

Thanks as

Ever PMRpro

[PMRpro Ambassador in reply to camerashy]

Come back and tell us what they find - probably nothing, But having PMR managed properly would be a help probably.

[Hidden]

Hi camerashy, what a polaver!!!

I too was terrible breathless for months but Dr just said I wS fine, as did rheumy. I find when I am flaring breathlessness and generally feeling tired and unwell is part of pmr.

You definitely need to get the breathlessness checked out. The thing that concerns me is if they try to drop you on the post viral illness thing. What are they intending to do. Surely they need to do something. 10mg was suspected gca and pmr is just stupid. It most likely wouldn't cover pmr. You might need to be very proactive with your gp to get breathlessness examined and diagnosed. It's three years now. Try your hardest to not let them fob you off. 🌻

[camerashy in reply to Hidden]

Thanks Poopadoop

I am just so confused I did in fact question my dosage but was told to leave it to the “experts”

Thanks for listening x

[Hidden in reply to camerashy]

Some don't like being questioned. I really hope you can move forwards instead of sideways and backwards. Try and get a good sleep, recharge the batteries and plan your next move. 🌻🌻

[Hidden in reply to Hidden]

Hope you had a better day today

.. 🌻