Dr Ala S Al-Hussaini

[Angel_doll]

I was diagnosed end of 2020. I have been on 7mg pred since beginning of 2022, my pains have increased over the past six months, and an attempt to taper further was a disaster. Having dropped right down the priority list at the Royal Surrey County Hospital, and not having had a consultation for over a year, my GP did me a new referral to Frimley Park Hospital, where I was seen by Dr Al-Hussaini last week. He took a brief history (I had prepared myself with such, from my personal notes), asked some questions, a brief exam, then sent me off for further blood tests and an X-ray of my pelvis. He spoke of ruling out other causes for the pain, then considering steroid sparers, as he thinks the pains may be caused by the pred rather than the PMR. As PMR is listed as one of his areas of interest, I’m hopeful that I may be able to make some progress from where I find myself at the moment.

Has anyone else any experience with Dr Al-Hussaini?

[PMRpro Ambassador]

Personally I would suspect you have tapered to too low a dose to manage the PMR - not that the pred is causing the problem. It is highly unlikely that the PMR has gone into remission after only 2 and a bit years. As long as the underlying autoimmune disorder is active you will need enough to manage the inflammation it creates and even slightly too little will allow the left-over inflammation to build up, just as a dripping tap eventually fills the bucket and it will overflow.

[SnazzyD]

Sorry, I can’t answer your question but I do so wish doctors who say the Pred is causing the pain, would explain what the mechanism is. It’s invariably when people get to lower doses when it is said. So is it indirect and due to Pred effects on the body and if so what? If it is a direct effect then what is that and why wasn’t it there at higher doses? Why is pain said to be said to be the Pred when people are in pain 2-3 years later, still in the period PMR could still be active?

[piglette]

I hate to disagree with your rheumatologist, but I would have thought the PMR type pain you are having is highly unlikely to be caused by the steroids for any length of time. You might have steroid withdrawal for a couple of days when you first reduce. Did he mention that you are coming into the dosage area where your adrenals will have to start waking up? This can cause some strange things happening too.

[Bramble2000]

Hi, I’m wondering if you live near me, I’m in Burgess Hill and see a rheumatologist at the RSCH. X

[Angel_doll in reply to Bramble2000]

That must be quite a journey for you. I live just 8 miles from Guildford, so no distance at all.

[Bramble2000 in reply to Angel_doll]

It’s the lack of parking that causes the biggest problem. X