Some not so good developments: Hi all, I haven't... - PMRGCAuk

PMRGCAuk

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Some not so good developments

Beekaykay
Beekaykay

Hi all,

I haven't posted on here for quite some while, so first a bit of background.

Diagnosed with PMR in Oct 2015.

Struggled to reduce to below 10mg pred for ages as every time I did I got "ice pic" headaches

Eventually got to 7.5 after about 18months and stayed there for around 6 months as same thing happened if I tried to reduce no matter how slowly.

In the last year I have now got to 2.5mg. with no symptoms and no headaches

Now the bad news begins.

I was feeling more and more tired and fatigued didn't know if it was pred induces but with no other symptoms I decided to have a thyroid function test (I live in Cyprus and here we can just rock up to the lab, pay the fee and have whatever tests done we like. Usefull)

Thyroid was low so went to see endocrinologist. he ordered several other bloods and an MRI of pituitary gland.

It seems I have very low hormone levels and both a tumour and a cyst on my pituitary.

The Drs are now suggesting that it may not have been PMR but could have been the early stages of the tumour and/or cyst that were causing the PMR like symptoms in the first place. Possibly 3 years on pred for nothing.

I'm now waiting for my next appointment with the endo, next Tuesday and have a Neuro surgeon primed and on standby. (Isn't private medicine wonderful?)

I don't actually have any option other than private as I'm not covered on state system.

I think I need some happy pills as things are starting to get me down now.

Stay as well as you can everyone.

Brian.

11 Replies
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PMRpro
PMRproAmbassador

Did they not investigate thyroid function at the start? That should always be a differential diagnosis in PMR. I know it is difficult when you don't have access to specialists but that is something even a GP should have been able to do. I remember you weren't entirely convinced were you? However - it is entirely possible that it was PMR then - and given your response to 15mg PMR it wasn't an unreasonable conclusion to come to.

All the best! Do keep in touch.

Beekaykay
Beekaykay in reply to PMRpro

I did have thyroid function about 1 year in and it was low but within normal range.

As you rightly say it could have been PMR then. I guess it's one of those things I'll never know for sure.

Sending sympathy and good wishes, let us know how you get on.

Hope you get an answer. That is what we need. Wishing you well🌸

Hidden
Hidden

Hi Beekaykay, I am sorry to hear your news.... I can understand why you might be feeling down! Bummer, indeed. I hope you get this sorted soon and it all turns out okay. Please keep in touch and let us know.. We will all be rooting for you!!!!

Diagnosis so confusing for you Brian. None of it helps. Hope they get it right now. ATB

Stay strong and positive! Frightening to hear those words from doctors, I know as my son had a malignant inoperable brain tumour at age 17. Now a 50 year old man. So many advances made in this period too. I repeat stay strong and positive and good luck. Please let us know how things go too.

Agreed with above messages. It may have been both.

In tapering, remember adrenals need to be working again. Would follow the slow method.

Agree stay positive

All my best to you.

All the best BeeKayKay and would be great to get a follow up from you. I sometimes think PMR is a convenience when nothing else fits the immediate solution.

I get to feeling sorry for myself and then I read a post such as yours Brian. One thing after another🤔

Good luck

All the best. Keep in touch with us - we care! 🍀

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