thank you!

[RT18]

We’ve just had a helpful telephone call with Roddy Hughes. He said I was right and mum had most likely flared.

I am so thankful that this site has given me the education that I was aware of what was perhaps going on with her and the courage to up her steroids myself. He seemed very unphased that I had taken matters into my own hands!

Anyway mum should stay on 10mg for 2 months and then start a slow taper but not to worry about that too much if it causes issues for her.

He will write to the GP so hopefully I will be given a bit of freedom to adjust dose as needed. Interestingly he said that if she is unwell in the future but her urine test is clear and her chest is clear to assume inflammation is the cause and act appropriately by increase steroid.

And I felt listened to. How refreshing to hear a medic say the patient knows best …and when they can’t communicate that for themselves…then the carer is the next best 😀

[PMRpro Ambassador]

So glad you got on so well with him. He is one of the select few who know that just as parents know more about their children than most doctors, patients know themselves better too. A friend in Germany who was a paediatrician said they were taught that as one of the first lectures they were given!

[tempusfugi]

Excellent new, RT18, for both you and your Mum🥂

[BettyE]

What good news. Some switched on brains! Hope your mum continues to benefit

We need thinking, courageous professionals in all departments not blinkered box tickers who think knowledge has been on hold since the day they qualified.

The GP who saw me through eight years of PMR was prepared to listen to me. When something he suggested worked for me he said, "I'll remember that for future reference." I could have hugged him. Hooray for life-long learners.

[RT18]

One thing I also was going to mention was I was contacted by the Rare Disease Network who I must have registered with. They are conducting research as to the information & support people are given throughout their disease journey. I was paid £30 to talk about how the only info / support I have got from was on here. Hoping these studies may lead to improvement - I shudder to think what happens to people who don’t stumble across this support.