Help please. My SIL has classic PMR symptoms but GP says bloods are normal (no raised CRP/ESR). Referred her to a pain clinic who have given her Morphine 50mg twice a day. She has now developed a one sided “migraine” with pain in ear and jaw. GCA?
Can anyone recommend a good Rheumatologist in the Orpington, Kent area that we can get her referred to.
Many Thanks x
Chertsey close enough? Lots of very positive feedback for Rod Hughes drrahughesrheumatologyltd.com/
HOWEVER!!!! GCA is a medical emergency and you should get your sister to A&E NOW.
P.S. 20% of us have ‘normal’ bloods.
Hello. They are giving morphine twice a day, that’s pretty heavy stuff. For what, to their mind? Normal ESR/CRP is not proof of no PMR. If these head symptoms persist it might be worth pitching up at A&E because if it is GCA something needs to be done now.
Crazy isn’t it, handing morphine out like sweeties! And as you rightly say, for what? I’d want a definitive diagnosis before meds. Also side effects include muscle stiffness and headaches which will muddy the water nicely 🙄
Been said - if she has symptoms of PMR/GCA the place to head is A&E asap. Kent has been a bit of a desert for PMR/GCA in the past though. Maybe Kate knows if there is a fast track at a hospital nearer than Southend?
I think there is a good Rheumy at Orpington and Princess Royal - Dr. Richard Campbell. He came to a PMR/ GCA uk meeting a few years ago and seemed interested in the conditions.
Thank you X
Would endorse Soraya’s reply - Chertsey if you can make it but A & E first call. Let us know how this pans out?!
Thank you all for your replies. I have told her to go to A&E and explained the risks of untreated GCA but she says she doesn’t want to make a fuss! It’s difficult as I don’t live close, but I have now got her daughter on the case. I’ll keep you all posted
It'll be a bigger fuss if it does turn out to be GCA... Oh dear - hope the daughter is effective. Better to go to the doc 5 times and it be nothing too bad than miss the once it matters.
Though forgot to ask - does the morphine make ANY difference? If it doesn't, it's the Pain Clinic to change their mind too...
I am so angry now! SIL head pain so bad last night with blurry vision. She went to A&E. After minimal poking and prodding (no bloods no scans) they say it’s just a severe migraine and “keep taking the painkillers! Wow! So obviously the Morphine is having no effect and also she’s on Naratriptan. I despair of our health care!
I know. No idea what to suggest though. I just hope it doesn't end badly ...
Except - a different A&E next time as suggested below.
Good news. (Well sort of). With her daughters help got Sil to new GP. He listened and immediately said. PMR. Her blood markers are still not raised but he has acted on her symptoms. So wean off the various pain killers and... Prednisolone. 40mg for 5 days 30mg for 4 days then to 20mg and back to see him. She started taking them Friday and this morning was able to “leap out of bed pain free and raise her arms”
So start of a journey for her which we know is going to be tough but at least now she has proper care.
I’ll get her to join this group. I’m sure she will find it helpful and supportive
Xx
I like the sound of this guy!!!! Is this just a new person or a new practice?
New practice. She’s going to stick with him. I don’t know why the other GP, Rheumatologist and Pain Clinic were so reluctant to try the Pred? Cheap med and with her symptoms and if it works it’s a case closed! We know Pred is a “dirty med” but far better than all the morphine etc. Which wasn’t doing the job anyway. X
I agree - if it doesn't work you stop and think again. If it works then you know it is inflammatory - whatever the bloods say. Too lab orientated without knowing enough about it ...
Excellent news indeed, at last in good hands. All the best to yr s-in-l.
Caro12line - Greenwich is pretty good. Can get a train straight in to Greenwich itself, or the A2 will take you straight in, through Blackheath, across the heath, bingo. Think I remember reading they have a special unit there. Would have to check it out. Hope the situation pans out.
Strewth, they have changed the name - lived just up the hill from them for 25 years. Anyway, found the website - one can contact them...also there is Lewisham: here ya go -
I had a good experience at King's. My rheumatologist was Dr. James Galloway. Denmark Hill Station is, I think, a direct connection to Orpington. I had PMR at the time and went to King's A&E with a short incident of blurred vision. I had a thorough check up and the next day had eye, ultrasound, CT and MRI tests done, checking for GCA, TIA and vascular problems. Dr Galloway didn't try to get me onto Alendronic acid and was very relaxed about my very slow steroid taper.
Carol - Kings, Denmark Hill, Mike s gave them a great write up : "... good experience at King's. My rheumatologist was Dr. James Galloway. Denmark Hill Station is, I think, a direct connection to Orpington. I had PMR at the time and went to King's A&E with a short incident of blurred vision. I had a thorough check up and the next day had eye, ultrasound, CT and MRI tests done, checking for GCA, TIA and vascular problems."
Couldn't do better than that. wish I had as good on my doorstep !
Need to be thoroughly checked out. Courage.
Dr Amand Mootoo at Orpington Rheumatology is great. She came and gave a talk at our group meeting earlier in the year.
Private rheumatologist
rheumatologist
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