hi , I’m waiting to see a rheumatologist but wonder if there’s a knowledgeable one in the uk northwest. I’m in Chester.
I managed to reduce from 12 to 11.5 mg but after about 3 weeks realised I was back to just sitting as not feeling well. The last two days I’ve developed aches and pains in all limbs and back of neck and feel unwell.
I don’t want to wait any longer for the nhs appointment so recommendations are welcome. I’m thinking of increasing to 15 mg for a week then dropping to 12 mg.
Thanks for any advice
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Sound almost in line with the usual flare protocol we recommend - except we suggest adding 5mg to the dose you last okay. Adding 3mg might be enough, but you won’t know until you try.
That's his problem. If you need more, you need more and the recommended starting dose range is 12.5-25mg. Fifteen and no more is old hat - it is often not enough and the 2015 Recommendations recognise that.
"He was not happy & said he would only allow it for 2 weeks. His objective is to get me off steroids as quickly as possible."
Appalling - I hope your usual GP has explained the nature of PMR. I pity any patient under the young one. We ALL want of pred asap - trouble is, the PMR hasn't read the memo.
And may save our sight and even our lives - if GCA develops it can have very serious consequences and it is thought that not being on pred increases the risk of PMR progressing to GCA which can cause sight loss and even strokes.
There were good ones at Gobowen - whatever it is called these days!! No idea what it is like now. The northwest has been a bit of a desert in the past.
We live in Bayston Hill, which is on the edge of Shrewsbury so my husband gets sent there for his arthritis and we have both been there also for bone density scans. My brother had his joint replacements there and was very pleased with his treatment there.
In the NW but fortunately never needed a Rheumy. Would agree with DL that going with the protocol (5mg)is probably the best way forward. The increase should mop up any build up from the increased inflammation and after a week, two if neccessary, you can drop back to 12mg.
I agree it can be difficult but you also have to consider your quality of life. If you go above his arbitrary level of 15mg and it works then you have the argument on your side. If he then grumbles ask him what his suggestions are for reducing the pain/inflammation and giving you an acceptable QOL. Take copy of the BMJ guidelines with you so that he can see in black and white that you are still well within a recognised starting dose of Pred and that there is no one answer that fits everyone. Do you have someone you can take with you and support you? These ill informed doctors really do need to go back to school. Good luck.
My husband could come with me. There’s a Gp I see who I can discuss things with but occasionally I can’t get to see him as he’s part time. I then have to see another one and that’s when I can have problems.
I’m also in NW and struggled for months to see a Rheumatologist. I waited and waited at my own healthcare trust (Wigan Wrightington & Leigh) to no avail. I tried Warrington but was refused. Tried Manchester, got refused.
There seems to be shortages in my particular area and I eventually paid twice to see ones privately. Fortunately the second one I saw did help and referred me to MRI (Manchester) where I was then accepted and have received much better care than I had from GP.
However after 3 months and after starting me on Methotrexate as a steroid sparer I am being passed back to GP for monitoring and bloods etc.
I was disappointed with this as I was happy to travel as it was better care than I’d previously had. However, they are keeping me as an outpatient so I can still contact them for help if I need it.
I hope someone can recommend a good one for you locally as they are around but rather thin on the ground!
That is normal for MTX - shared care with a GP for the monitoring. Really PMR CAN be managed in GP practice with a sensible GP and access to a rheumy which you do have. There are shortages of rheumies everywhere - it is worldwide, not just the UK.
Yes I understand the shortages, but some areas do fare better than others when you hear of other experiences. Just down to where you live.
I have GCA as well as PMR and steroid induced hyperglycaemia, hence the MTX to get my steroid dosage down.
I have never met my GP yet, but I am happy enough to be looked after locally if the care is good. I have actually never seen a Rheumatologist at the Kellgren Centre and the only communication with nurses is via 3 monthly telephone monitoring, apart from the ones who do the bloods. There is very little face to face there, which I feel can be more reassuring and can help to develop more of a connection, but it’s just not available.
I'm 8 miles from Chester. I was referred to Arrowe Park. Not impressed with rheumy. Hubby was referred to Countess of Chester. It took ages but they have been better than mine. However he still has no diagnosis. He thinks it's long covid, but she won't commit to that. Anyway, they are monitoring him. He initially went private due to the long wait at Chester. Spire Warrington. They did a barrage of tests which cost a fortune, then never sent the results to Chester so they did them all again. What a waste. So sorry, I can't recommend anyone! If you find a good one, please let me know!
Hi, I saw Professor Ben Parker at Spire in Manchester. I thought he was excellent and I chose him because he was the only one I could find with some reference to GCA which I also have. He got me into the Kellgren Centre at MRI very quickly on the NHS after I’d been refused when referred by my GP.
He set me on the right path for which I am very grateful. I didn’t expect to see him again however I did think I’d see a rheumatologist but most treatment is done remotely, apart from bloods of course! I was given an appointment to see a rheumatologist in clinic but he was not available when I went unfortunately, however I still started the ‘regime’.
I now have a good rheumy at the Kellgren. There are nurses available between appointments, which is useful as my appointments are now a bit more sparce. This maybe due to me also being monitored by Endocrinology. Nonetheless, I would recommend Kellgren, if you can get in. Best wishes
Hi, I'm in Liverpool.I've seen two Rheumatologist both have been excellent. Private consultation with Dr Zoe Mc Claren at Spire Liverpool. NHS consultations for 3 years with Dr Jennifer Christie at Broadgreen Hospital.
My advice and I've been back from 10 to 15mg/day 3 times before. The standard 15 ->12.5 ->10mg/day in 4 weekly steps does NOT work. On reaching 10mg each time I fell of a cliff. This time, thanks to listening to the good people on this forum I went 2 weeks 15mg -> 2 weeks at 14 -> 2 weeks at 13mg --> 2 weeks at 12 mg (since I was fine on 12.5mg 3 times previously) --> 4 weeks at 11mg and now I'm doing a 5 week taper DL style to 10mg. I'm 2 weeks in and things are so far fine. Once there I'm probably stay at 10mg for at least 2 weeks before attempting going down to 10.5. Seriously I'm convinced the slower the better and luckily my GP is going along with it. One more thing during my first 4 months I had 5 different GP's. Eventually I happened on one I felt very comfortable with and I asked if he could see this through with me which he was happy to agree to. Now I plan GP visits around his availability. I'm very happy with this arrangement. He's even got me a Rheumatology appointment within 8 weeks. I seem to remember someone on this forum saying tortoise and hare - slow and sure 🙂. Good luck
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