Update

[EdithWales]

Good morning everyone. Still warm and breathing, was locked out of my account and only just got back in.

When I was first diagnosed with GCA I was on HRT I was told by the Rheumatologist that I should stay on it to protect my bones from the Prednisolone. My DEXA showed normal

density probably due to being Welsh pit pony stock. Over the years several GPs have tried to stop the HRT and failed. The Endocrinologist who is messing with my thyroid wanted me to have another DEXA to assess where I am now and I was delighted that it reported my density was normal for my age, I had low risk of fractures and didn’t need treatment other than calcium that I already take.

My bladder is still a problem and I am seeing Professor Widdle tomorrow, the long course of Nitrofurantoin had to be abandoned due to persistent coughing, however I have high hopes for the vaccine.

I hope you are all hanging in there

🥂

[DorsetLady PMRGCAuk volunteer]

Lively to hear from you again.. thought you’d been away to sunnier climes… 😊

[EdithWales in reply to DorsetLady]

You to. Off to Estapona on Thursday for some much needed sun.🥂

[Golfers1]

Professor Widdle. Made me laugh so much I had a coughing fit 🤭

[EdithWales in reply to Golfers1]

Glad you liked it 🥂

[PMRpro Ambassador]

Good to hear from you and it is mostly positive!

[EdithWales in reply to PMRpro]

Yes. Still staggering around with my vestibular neuritis and had to see the Audiologist on Monday, true to form hadn’t been doing the exercises so there ensued frenzied catch up including mad head shaking. The next day I was much worse, saw my normal physio who said I had shocked my labyrinthine, this was confirmed by the Audiologist who has given me more gentle exercises and no more head shaking. There’s always some fun. Are you alright? 🥂

[PMRpro Ambassador in reply to EdithWales]

Lot better than I was before Christmas - horrendous low back pain. Rheumy took pity and did an u/s guided steroid injection in the sacroiliac joint - magic! Pain clinic has claimed it was too risky. might bleed. Then every solution I found that took the edge off she tutted about. Began to wonder why I bothered going.

[EdithWales in reply to PMRpro]

So sorry, I had spinal stenosis a year ago and had a spinal injection, it was agony

Saw Professor Widdle yesterday and he prescribed Uromone. It’s licensed here but not available on the NHS, I could have been put in the clinical trial but may have had the placebo and I can’t wait. It costs £850 so I hope it’s worth it. I am going to Spain on Thursday so will wait until I come back as it has to be kept cold.

Will let you know how I get on

🥂

[PMRpro Ambassador in reply to EdithWales]

Is that the vaccine? Sounds very effective. Shame it isn't a bit more convenient to use!! Hope it works for you.