The rheumatologist asked so many questions . I can’t remember a lot about the appointment as I was in the throes of a flare & very tired . Nearly falling asleep during the appointment.
She didn’t give me any indication that I definitely have PmR , but asked who diagnosed it . Which was my GP . I haven’t had a letter from her as yet , which is the usual procedure after a hospital appointment. Just wondered what happens next ? Do I just wait til I get another flare and deal with it accordingly?
hi there. As you possibly know anyway - speaking as a former medical secretary don't hold your breath waiting for the letter. But tut, it all sounds most out of order. You should either have been asked to make a follow-up appointment or told you were being returned to the care of your GP.
Now I don't know the context here but joining the dots you were diagnosed by your GP, started on Pred - and then you flared? The blessed Guidelines for GPs state as follows:
Refer for specialist management if:
It is not possible to reduce corticosteroids at reasonable intervals without causing relapse.
Corticosteroids are required for more than 2 years.
The person has repetitive flares.
The person is experiencing (or is at high risk of) adverse effects from corticosteroids.
I was actually diagnosed in hospital then returned to the Geep. Then when I flared she referred me back
In this scenario, though I don't of course know if yours is the same, what the Consultant is then supposed to do - what happened to me - is check you over to see if there's anything else going on. ~Not to mention advise you further. Did she offer any opinions?
But your last question is a bit daunting. If you have PMR and it's responding to Pred and you are on the dose of Pred you need and you don't let anyone force you onto too low a dose, though your disease activity could increase there is I think no particular reason to think you will have another flare.
Thank you for your response. About a 18 months ago I had painful shoulders and arms and couldn’t raise arm to brush hair or reach anything. It passed after a short while . Then beginning of this year I had flu symptoms without temperature. It went in for weeks . Then covid in March. Followed by painful stiff upper arms , shoulders , neck , unable to raise arms again , painful armpits and pelvic area . Went to Gp , he arranged blood tests for CRP and think ESR ? Suspected PMR . when blood tests came back , he treated me with pred & within 24-48 hrs pain vanished . Then I got temporal pain , blurred vision , which I still get , but have fine for years . Sent to A&E . IV steroids given . Just incase GCA . Rheumatologist did say /ask about any family member with chrons or ulcerative colitis. Which there isn’t . As I’ve started weaning off , there’s some pain in right arm and armpit . By the way , I’ve had hazy/ blurry vision since diagnosis of uveitis in 2000 .
It does take time for the consultant's letter to be sent out in the UK - I get a copy pressed in my hand before I leave the room here in northern Italy. It is also possible that a copy has only been sent to the GP - usually the patient has to request to be cc'd - and the GP hasn't bothered to read it yet or if they have, hasn't called you in to discuss it.
Your medication should be adjusted to sort out the flare and then tapered carefully to avoid a repeat - as we discuss here on a regular basis. If the GP made the diagnosis in the first place, in the meantime they are your port of call in the event of a flare and they can phone/email the consultant for advice.
Oooh thank you so much 😊 for the reply ! Appreciated. I usually get Gp copies sent to me . Might be a bit early at the moment.
I had an appointment at the beginning of May. Last week I rang the department to see if the letter had gone missing. The phone was answered by a very stressed sounding secretary who said she was sorry but she was the only person there at the moment and that my letter was on the rheumy's desk waiting to be signed. I asked about my next appointment and she was able to tell me.Sadly this seems to be the state of our hospitals at the moment
This struck a cord with me.
I noticed when receiving my copy of latest Rheumie consult which arrived only 2 weeks after the consult, that it finished with Dictated and NOT signed by and then his name, NHS number etc.
I wonder how much time that must have saved and have may have been beneficial for you and others waiting for a Signature.
The concern for me now is that she won't remember me after two months, so any mistakes wouldn't be noticed any way. So perhaps sending them out unsigned would simplify things.I also felt that by ringing I was adding to the pressures on an already over worked secretary
Dictated not signed means no doctor has read it meaning there might be a critical typo, perhaps in a number, perhaps in something as simple as omission of the word 'not'. The quality of dictation is not always perfect, whether a strong accent or ambulance sirens in the background. It's an art perfected by practice and some just aren't very good at it, rely on the secretaries to produce coherent English.
"rely on the secretaries to produce coherent English."
which isn't guaranteed when it is farmed out to the equivalent of call centres in other countries which has happened!
Indeed and verily! Also LBS (Low Battery Syndrome') and DTS (Defective Tape Syndrome, where it doesn't move on perfectly). What would life be without challenge! It's very rare for a good secretary to chuck a tape back at a doctor and say this is untypeable - but it has been known. Of course there are some common medical phrases we automatically double-checked - full blood count for instance.
Hi. Sorry that you have been left in limbo like this. It seems odd to me. Most rheumatology visits result in a slew of blood tests and possibly scans to rule out other causes. Often done at the hospital lab on the day. As you said you weren’t able to really pay attention during the visit it might be best to call the secreatary in case you missed instructions and your GP to see what to do about meds. You shouldn’t have to wait for a letter to have a plan of care.
yes true . A red butterfly rash on both cheeks and across bridge of nose keep appearing. ! And has done since this flare ! They’ve know about it, but offered no info’ , explanation.
I thought it was the mark you get with Lupus ? !
The butterfly rash is found in a range of illnesses, not just in lupus, but I have never heard anyone with PMR mention it. Did you mention it to the rheumatologist?
yes I did , but didn’t get a response / answer 🤷🏻♀️
I'm wondering exactly the same thing as 5+ weeks since my rheumatologist appointment and seem to be back left in the clueless hands of GP's on dose tapering. I'm suffering adrenal failure/flare and red stripes each side of my nose has returned last couple of days. I know the latter are nothing to do with PMR however as they stared a decade ago along with perimenopause symptoms and lupus has also been discounted
What do you mean by saying you are suffering adrenal failure - was that already a state before the PMR symptoms started? You are still on a relatively high dose of pred - of course your adrenals aren't functioning normally.
Not sure you are low enough for adrenal failure - have a read of this, it explains what happens to them when you are on Pred-
healthunlocked.com/pmrgcauk...
I’m not sure either but have all the symptoms listed aside abdominal pain/sickness
I thought I was beginning to feel better after reducing from 45mg pred to 12.5 since diagnosis 5 months ago now I feel awful again.
DRY EYES
GCA Flare-again
Same old question - withdrawal or flare?
Please does anyone know a private Rheumatologist in Cornwall or Devon who I would be able to go and discuss my osteoporosis with? Thank you.
