Would you prefer regular rheumatology clinic visi... - PMRGCAuk
Would you prefer regular rheumatology clinic visits, OR phone appointments with a specialist nurse and access to a rapid access clinic ?
As most sufferers can read on this Forum is that there seems to be a lot of flare-ups with steroid reduction and this indicates that you need to see your Rheumatologist on a more Regular Basis ..I would be happy to see a Registrar under him from time to time as long as my main Rheumatologist could give the Final answer to any underlying problem . I would also be happy to have a telephone conversation with a qualified Rheumatology Nurse which I did manage to do earlier this year . I am lucky to be with a Good Rheumatologist but have been let down in the past at a different hospital.trish29
I only see my GP. I don't see any specialists at all.
Me too
And me. Not that I'm complaining, he lets me manage my illness myself.
I have had PMR for the last 10 months started steroids 20 mgs now 7 or 8 I hae never been referred to any specialist I only see my GP who to be fair seems to know a lot about PMR
This poll does not bring out the complexities people have with Rheumys by phone or in person!
I had a fab rheumatologist, with regular appointments because I was injected with Pred and didn't take tablets. I could also phone the rheumy nurse at any time. So I had a good experience.
But for those grappling the complexities of titrating tablets and with unsympathetic rheumys I can absolutely see why you'd want phone conversations and rapid access clinics.
In an ideal world I'd like to see a choice for the patient for either approach, as these conditions attack us in many different ways. As to GPs - their help seems as patchy in delivery - so I suspect the same poll needs to ask the questions of those only dealing with GPs!
Totally agree. I have just been given my script to start taking DMARM, my opth appt is not until tomorrow. I understand, from this caring community advice, that I should hold off taking this until my eyes are tested (I am having visual disturbances). Advice from Rhuemy is needed really, but not taken Hydrox yet.
Great forum. Thanks
Babs x
Rapid access clinic
I should elaborate. At this stage in my GCA, I would like rapid access clinic, as I'm up and Don with my Pred dose, flaring, trying to temper, so many symptoms happening. My rheumy is very good and I see him about every 6 weeks, but he is so busy, I feel bad contacting him every time I have a problem.
My GP surgery knows little about GCA and Don't seem to take it seriously, so have little confidence in their treatment/assessment. The last time I contacted them with severe temporal pain while tapering, they said to wait until next rheumy appointment. I didn't, and rheumy put me straight up to 40mg Pred.
I only see gp, and any gripes I have , the answer is, it's the pred and it will pass. I've still yet to see a rheumy but have received a letter from hospital to say I'll be given appt later in the year ( but they failed to mention which year) so I wait.
It would be very reassuring to be able to telephone someone at the Hospital when you have concerns, Alas this kind of help is not available at my Hospital and many others I imagine.
This site is a great comfort to me, to be able to talk to others when you are worried about your symptoms or drugs is worth its weight in gold especially when you are feeling at your most vulnerable And fed up with it all and to know that support is always there is very reassuring something that is truly lacking on the NHS.
GCA and PMR for 5 years.
I have regular appts with Consultant Rheumatologist and specialist nurse.
Also access to phone service when nurse always calls back same day.
When I have been in crisis, consultant has rang me home and usually seen within the week.
GP practice also very supportive.
My priority is being able to access the eye casualty same day when I have had episodes of blurred vision.
I always see the rheumy specialist but sometimes the appointment can interfere with work so providing I wasn't having any problems I would like to be able to telephone in and discuss any issues I ws having, I'm 'lucky???' To have reduced fairly well over the last 2 years from 15mg pred to 2/1 alternate days and hope to be off them altogether by Nov if all goes to plan....slow slow reduction
Hi Kate, I have just found this site. It's great! Haven't able to find anything like this in Australia. I was diagnosed with PMR June 2014. It came on suddenly but took a while to diagnose as I thought I had neck/shoulder problems from sitting at the computer! My cousin also had it some years ago. We have Northern English heritage.
On pred since then and tapered down to 8mg/day. My GP and Phsyio (both excellent) diagnosed it. I was sent to a rheumy specialist in Sydney, where I live. My GP checks bloods regularly and sends results to my specialist, who I see every 8 weeks or sooner if necessary! Have had a few flares....while tapering.
The medical system here is a little different but I like the sound of access to a rapid access clinic! Some symptoms can be disturbing....ie is it a side effect of the prednisone or possible GCA?
Thanks for such a supportive site!😊
Jenny from Oz
I have only just been diagnosed with GCA and my Rheumatologist has given me a four month appointment but has also said I can phone him with any concerns I have about the reduction of my steroids so I am happy with this at the moment.
I had to battle for over a year to get a diagnosis. First with a dismissive GP then an unhelpful, rude and dismissive NHS Rheumy. I had to go private to get a diagnosis. Since diagnosis 17 months ago, I've seen my new NHS Rheumy twice and no idea when I will get my next appointment.
So what I would want clarified is what constitutes a regular appointments?
the rheumatologist I saw did not have any idea regarding the extreme fatigue I was experiencing.... he told me to see a neurologist or go back to my primary care.... plus he was not convinced I had PMR because my blood work did not confirm Dx. However I had severe pain in hips, shoulders, neck.... so now since August 2014 I've been challenged with this "disease". My pain is gone but the fatigue is wrecking my life .....
From experience, GP's just do not understand vasculitis and most seem unwilling to learn - sadly!
I had no luck with the doctor, haven't seen anyone except acupuncturist, thinking of changing my doctor!
I have a very good Doctor (and Practice) helping me generally but when I am having a bad bad reaction to a reduction which even with experience I do not seem to solve, would appreciate contacting/rapid access clinic.
Because it was impossible for me to decrease the Pred without flare ups I was sent to a rheumatologist. Best thing ever! She is brilliant but I also have access to the Rheumatology Helpline. I have used this twice now. Last week a bad flare meant I could hardly move and felt (as someone said ) like'a knackered horse'. I rang the Helpline, the nurse phoned back almost at once and the consultant saw me next day. Large increase in Pred but am now moving. Now that is the NHS at its best
i have been seen by musculoskeletal specialist and phiso for a few years with stiffness and pain
it was only when i went to a DR in March at my GP practice that he told me i had PMR
so as yet i haven't been to a rheumatologist. However it would be good to be able to phone someone and have a Rapid access clinic.
this site provides such good info and my gp seems to be on the ball
I am deaf and although my cochlear implant is brilliant telephone calls are not good.
I have GCA and would prefer regular rheumatology appts.
how can you see rheumatology so soon i have to wait at least 6 months i have a lot of pain .my gp is no good .what can i do .
After seeing a very good rheumy for a year I have been in the hands of my GP for 2 years and have recently asked for a bone test, which was done and diagnosed border line risk but put on Allendronic acid etc which led to nausea and stomach upsets which I had not been warned about. Now just relying on my low dose HRT and good diet but after reading posts on here I wonder if I should be asking for Vitamin D test? Have been trying to lower Pred dose gradually for some months but got down to a mix of 5, 4 and 3 when I was feeling so unwell on the AA and Christmas approaching I have dropped the 3mg for the moment. I would like to see a rheumy again as I feel rather out of touch with any new developments and sometimes wonder if I have Psoriatic Arthritis too. Pollyanna16
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