Well at least that’s one less thing to worry about.

[Zebedee44]

I’m so pleased to learn that my recent dexa scan after seven years of prednisolone is normal and unchanged from three years ago. Not being a pill popper before diagnosis I have struggled to take the calcium and Vit D supplement and Alendronic Acid which were prescribed as routine by my GP. A dexa scan back then confirmed good bone density and I have continued an active weight bearing lifestyle, but stopped eating meat three years ago. I do take a vit D and K supplément.

I have been complaining of jaw pain since diagnosis of PMR and have had a sore throat for two years. My GP prescribed omeprazole for acid reflux , which was then changed to lansoprazole by the ENT doctor. Both these drugs are known to deplete bone density. Hence my requesting a repeat bone scan.

The ENT doctor found evidence of irritation in my throat . She also referred me for an MRI which has revealed an enlarged tongue tonsil and, slightly more alarming, an enlarged pituitary gland. So the relief of the bone scan is sadly diminished by the worry about a possible pituitary adénoma and I am now on the next fairground ride with blood tests and a further MRI to get to the bottom of that. I always knew the blessed adrenal glands were involved on this journey but this has come as an unwelcome development.

I just wanted to say to all the newbies just finding out that have this curious invisible condition which nobody (apart from us here) has ever heard of, that you should definitely request a DEXA scan early on before you complicate your life with additional medications. PMR is not an easy ride for most of us, despite what the doctors tell you, and you should be prepared to advocate for yourself and make informed choices about your treatment. It might be quite a journey.

[herdysheep]

Sorry to hear there is a downside to your recent better news, ie bone health. All too often there seems to be something waiting in the wings and I wish you well with the investigations and outcomes.

You give good advice along with others on this forum. As usual, we learn a lot on here which is rarely shared by the medics we have contact with. If we had the right information at the right time we are more likely to make the right decisions.

[Charlie1boy in reply to herdysheep]

Yes, most of my health issues started after I was 74, so my only comment can be “don’t get old”,

Thank goodness for this Forum; my daughter got me logged in to our Health Unlocked site the same day as I was diagnosed, and it been a godsend.

[Zebedee44 in reply to Charlie1boy]

At 67 I hoped to be rid of this in order to enjoy my retirement years in good health. At least I do have a fab doctor here and medical services in East Sussex seem to be better than most areas.

The support this forum provides has helped me through these seven frustrating years and without it I would feel very alone.

[Rugger]

So sorry to hear that you've yet another hurdle to jump. It is good news about your bones, though. The thing about the "blessed adrenals" is that they are linked with the pituitary gland and the hypothalamus in the 'HPA' axis. Seven years of pred may be the culprit?

I hope you're getting timely investigations to find the cause of the enlargement and then appropriate treatment. It's good to hear you have confidence in your local medical services.

Keep us posted. x

[Zebedee44 in reply to Rugger]

Thanks Sue, things are happening faster than I would like. I was cruising along on an even keel preparing to deal with adrenal insufficiency and now this curved ball has been thrown in.

On BBC Radio 4 at 9 this morning there was a really informative broadcast about the endocrine system and hormone producing glands, well worth listening to.

[CamGina]

I have a Dexa scan booked soon. Two years of prednisolone but I've been assiduously taking Vitamin D, calcium and magnesium. Hope your treatment goes well.

[Zebedee44 in reply to CamGina]

Did you have a scan at the start to compare with?

[CamGina in reply to Zebedee44]

No, but I've had a rheumatology appointment and they realised I ought to have a scan. I started all this 2 years ago and it was terribly post COVID - minimal interventions tbh.

[Simplewish]

Good to hear that your bone density is good but sorry that other problems have come along. I've been on Prednisolone for 4 years and have had two DEXA scans since been diagnosed with PMR and there hasn't been any change to my bone density but I have to ask my doctor to refer me each time as there is no recall from the hospital. I have taken Lansoprazol since starting on prednisolone but recently have to be careful what I eat as I soon have indigestion and have to take Gaviscon. I do take Alendronic Acid weekly which was prescribed by the rheumatologist I first saw but wasn't advised about taking vitamin D. There doesn't seem to be any standard advice about PMR but I suppose the symptoms are very varied. I haven't seen my doctor with any problems only have rheumatology appointments periodically. Hope you are soon sorted out. At first I persuaded myself that I would soon be over this dreadful illness but I'm not sure now as I seem to have lost all my energy and can't find my 'old' self.

[Zebedee44 in reply to Simplewish]

Thankyou for responding to my post Simplewish. I’m totally with you in feeling I have lost my ‘old’ self, in spite of having had a relatively trouble free if prolonged journey with PMR. This was to be my year of moving forward and away from the challenges of PMR and I have given up my ponies in order to deal with the lazy adrenals. The finding of this other gland issue is a blow I had not seen coming, but makes me wonder if all the facial pain that has plagued me throughout my PMR is connected to the enlarged pituitary.

My GP has prescribed Gavisvon for my chronic sore throat, I chose the aniseed flavour but it’s grim isn’t it?