Have any of you had a positive experience with a rheumatologist in Nottingham/East Midlands area, either NHS or private?
I was diagnosed 18 months ago, was on prednisolone until December last year but my new GP (moved house and had to change surgery ) won't prescribe me any more and the pain and stiffness is getting worst and nearly as bad as it was 18 months ago.
Over the past couple of months I've have blood test after blood test and I know my GP is being thorough but things are getting me down now. I'm getting to the point where I'm prepared to go private if that will get me some treatment.
Thanks
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Lottieandlola
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Sorry I can't help with recommendations but I do wish you all the best. Sure someone will be on who lives in the area. Also - is there a support group in Nottingham area?
What's the reason for denying continuation of your (previously successful I assume?) treatment? If all the tests and so forth haven't revealed anything else.
What dose were you on when you had to stop - did they let you taper off?
I tapered down from 20 mg to 1mg over 14 months but at 1 mg I could feel stiffness coming back. I contacted the GP and she said the stiffness could be muscle weakness due to prednisolone and put me on painkillers instead. The painkillers didn't help, I've tried cannabis oil and ibuprofen - now trying turmeric!
A taper or 14 months is quite fast, and the fact you had some returning pain at 1 mg is a sign PMR was probably lurking, although it could have been "pred withdrawal". But after two months that effect would have been long gone and because you are worse, sounds like much worse, the diagnosis looks pretty obvious - your PMR is still active and you really needed at least that 1 mg of pred, more likely a tad more as you weren't completely without pain at 1 mg. I must say I was relieved you were not at a higher dose and had to stop suddenly because that would have been dangerous from an adrenal point of view.
Yes, pred can cause muscular weakness, but it's most unlikely it would cause the very pain it relieves, and in PMR it's really the only thing which relieves the pain as you are unfortunately having to find out the hard way. If we knew of something which worked we'd be all over it, believe me!
Don't let your doctor convince you that your last 1 mg was likely not doing much. I've been there, done that, and I know for a fact, as do many others, that sometimes the last 1 mg is all an individual needs, but we really do need it. Nor is it all in our head. We aren't "addicted" to pred. Hard to imagine such a tiny dose can be effective and necessary, but there it is.
Is there anyone you can take with you for support, and to confirm your increasing symptoms? That does sometimes help. They can just sit there quietly, or perhaps remind you of something you may not yet have mentioned.
Yes, I was originally told it would last about 18 months! I know so much more now since discovering this group.
I've had the following tested:
CRP, full blood count, white blood cell count, Urea and electrolytes, liver function test, vitamin D, cholesterol, AST serum, eGFR, nuclear antibody, bone profile, ESR, thyroid, iron levels
The tests results state normal expect Erythrocytes sedimentation rate which was 'above high reference limit'
I have another consultation next Friday, it's with a locum gp - perhaps they will be more helpful.
As you probably also know bloods aren’t the be all and end all, but maybe a bonus [in this instance] that ESR is slightly raised - that may make locum think along the right lines… but do make sure you impress that symptoms are escalating.
The first doctor I saw when I had symptoms seemed to think I was a hypochondriac old woman and only prescribed heavy duty painkillers I wouldn't take. She said all my results were normal including iron. Months later new doctor said inflammation markers were "normal for my age" but I've since learned this is meaningless. No matter one's age raised markers point to something. And my ferritin was practically non-existent! However that second doctor went by my symptoms, ran all the tests again and prescribed 15 mg prednisone which worked like a miracle. All this took place 2014-15. Only in the past year has my CRP got down properly into a low single digit. I still take a small dose of pred although occasionally kick the tires and try a careful taper. Zero may still be in my future.
I did have very good luck with a locum, so I hope you do too. 🍀 Had been tapering relentlessly and not doing too well at the time and she told me to up my dose and also wrote a page of comments for my GP who, although very good, did seem to think I could taper off seamlessly over two or three years. I'd been doing so well up to then I think she believed this was possible. The locum knew more and imparted her wisdom.
I hope his refusal to not prescribe more was done gradually so you could taper off the pred. That action was seriously unprofessional - to disagree so blatantly with his predecessor. I;ve just read your reply to HeronNS - he should have been impressed you had tapered so well in such a short time and I think he is very out of order.
Can you remember what your ESR was with the original diagnosis? That it is raised now is a good indication he was wrong to stop such a low dose.
In the past the Nottingham area has been a bit of a desert - hopefully it has improved, You are prepared to go private - how far would you travel?
At the original diagnosis I wasn't given any details of the test results so I don't have a benchmark. The only person I've spoken to who seems to have any knowledge of PMR was the practice pharmacist at my old surgery, he told me not to try to taper too quickly as he had experience of another patient trying to do so without success.
Can I just clarify that the raised ESR is likely to be linked to/an indicator of PMR? When I rang the surgery for my results I was told everything was OK, I only know these results because I accessed them on line. If I hadn't asked for an appointment nothing would have happened!
As you can imagine I'm feeling somewhat let down which is why I'm considering private and would willingly travel but starting to struggle to drive as changing gear and applying the hand-break are things I'm adding to the list of what's becoming too hard to do 😟
I was lucky, I had PMR untreated for 5 years but the one thing that wasn't a problem was driving - the problems started when I unfolded myself out of the driver's seat! In fact, in the driver's seat I was much more comfortable than as a passenger as the driver's seat has a lumbar support.
Can I just clarify that the raised ESR is likely to be linked to/an indicator of PMR? When I rang the surgery for my results I was told everything was OK
ESR is one of the blood tests mentioned in all guidelines re diagnosis - but as we know it’s not always as simple as it seems. Up to 20% of patients may not have raised ESR levels - but do have PMR - and the test is not specific to the disease. It just shows you have fused inflammation in your body, but not the cause.
Just for info, in my case [in 2010]I was told my ESR was satisfactory - so GP discounted PMR - unfortunately 18months later after her going off at a completely different tangent I ended up in hospital with confirmed GCA and loss of sight in right eye.
After I accessed my records I realised my ESR level was not satisfactory -and should have caused concerns….but at the time I knew nothing about PMR nor GCA -and believed her…
It sounds very much as if the PMR is still alive and kicking. I can understand you wanting to see a rheumatologist privately. I assume you can’t see another GP? You can sometimes see a rheumatologist privately for an appointment and then get transferred into the NHS system. Most private rheumatologists also work for the NHS.
There is another GP but I've never seen him at the surgery. I have an appointment with a locum next Friday so hanging on that helping. If not then I'll try the private option, I was hoping someone could recommend one locally to the East Midlands, I've tried an internet search but only found one and wasn't sure if PMR was really his specialism.
Just looked at this thread which shows up in the "related posts" connected to your post here, and although it's dated it may have some useful pointers in it.
I am sorry to hear that you are having a difficult time. I have been receiving treatment in Nottingham at the Treatment Centre Queen’s Medical Centrefor GCA. Unfortunately I am not able to recommend my consultant who is pleasant but draconian and has refused dexascans and seems to take little responsibility, wants me off pred ‘18 months to 2 years. ‘ I know of others locally who seem more satisfied with their consultant at the same place. They see Dr ? Peter Lanyon I think is his name, might be Richard.
Hope you find some support, if you are in Nottingham one of those I know of used to attend a support group locally. I don’t know the details I am afraid but could possibly find them.
Thank you, someone has shared an old tread that refers to Dr Peter Lanyon at QMC, it's helping me knowing there are some specialists I can reference if I'm put off again with the GP.
I was referred to an amazing rheumy, Dr Nicholas Raj. He is the head of rheumatology at the Derby Royal hospital. I went privately to see him at the Nuffield hospital in Derby.
He was a breath of fresh air and I felt very confident in his knowledge of PMR. He was so thorough and very quickly got me on a treatment plan which has worked (with the usual few hiccups along the way). Last year, I developed slightly different symptoms and because I had seen him previously, his secretary got me a private appointment with him the very next day. Bloods were done on site immediately and I had an mri scan the following week. I cannot recommend him highly enough and overall he is a thoroughly nice chap.
I would insist that your gp refers you to him asap.
Thank you Charlie, I think I came across his name in my search. I just wanted to get some recommendations, especially if I'm going to have to go private.
Thank you all for your support and valuable info. I now have a couple of names I can reference and maybe even follow up with privately if I don't get any joy next Friday with the locum GP.
we live in Shropshire and the best thing my partner did was make a private appointment with a rheumatologist. He now tells the GP what they should be prescribing, it costs about £250 but sometimes he has phone appointments which are cheaper I think. Good luck, it will be such a breath of fresh air speaking to someone who understands PMR!
Hi,I have been seeing Dr Asha Srikanth, Consultant Rheumatologist at QMC , Nottingham, for the last 4 years.
She is very nice, has encouraged my tapering while trusting me to manage . I started with infusions as potential GCA and now down to 4mg.
I've had a few blips , awful side effects of the pred on the way. She has always been very kind and helpful.
I dont think there is PMR group in Nottingham. There's Trent Valley which seems to cover a large area, but since my duagnosis I'm unsure how active the group have been due to covid etc.
Hi, No I didn't. I had seen GP several times with feeling unwell, aching , bad headaches and really feeling exhausted/just not right but nothing was diagnosed. Then had strange eye problems. Chatting to a friend one Sunday evening she mentioned that her partner having similar eye problems had been diagnosed with glaucoma.Waste no time she said , get it checked . So following day went to QMC eye clinic. Within 30 minutes I was on a steroid drip ! Scary!! Consultant said, in his opinion I would have lost my sight by Thursday !
A biopsy was inconclusive as physiologically they couldn't find my temporal artery.
Referred to rheumatology...Asha.. and I've plodded on since then.
2 GPs...totally useless, no understanding other than calculating the number of pills required for a month on consultants recommendation. As an accountant, i found their floundering quite funny , in a despairing sort of way !
I rarely even mention to a Gp my PMR, even though I occasionally visit for other stuff. My saviour has been this site. I've learned almost everything from the brilliant people here and been able to hold my own in discussion with my Rheumatologist, as a result. Good luck,read lots of posts on here, many which may not apply to your particular symptoms. BI
I sometimes feel I know more than those who are treating me,, but that's ok auto immune issues must be the devil for GPs are expected to know all the answers . The best GPs refer their patients to those with greater skills. Sorry this has been a long response! A weight off my shoulders...next stop...Hyde Park Speakers Corner....
I was assigned to Dr Srikanth and her team after an emergency GCA diagnosis via my attendance at Eye Casualty in June 2022. She is kind and helpful as you say Ullswater. I’ve had the one blip so far and awful side effects of pred. Tapering has gone well generally, especially over the winter and I’m now slowing down further as I’ve reached 10 mg. I don’t know how you go about requesting a rheumatologist as I was an emergency but I have felt very supported by Dr Srikanth.
I was an emergency too,, but overall feel too that I have been supported. Dr Srikanth has supported me, always arranged further tests when I've had worrying issues..tendonitis, nerve tests...angiograms , Dexa..never ever has she brushed off my weird side effects as being ' nothing'. ! Looking back with a bit of knowledge, the anxiety, stress levels created by the side effects of prednisolone could have added to the already debilitating effects of PMR, but her approach gave me constant reassurance and enabled treatment for what in some instances turned out to be ongoing problems. I hope Lottieandlola try to make direct contact , ask her secretary at QMC of ways forward. Avril
Her medical secretary is so helpful. I have been anxious about blood results and with Asha’s permission he always gives me them prior to my appointments so I am prepared. She has kindly replied to my occasional email queries so promptly, even while I was on holiday when I had a panic.
I suppose i need my gp to refer me, but need her to accept my condition first but perhaps the locum I'm seeing on Friday will. I appreciate my GP is checking everything else too rather than just assuming it's PMR but in the meantime I'm getting quite desperate with the pain and stiffness.
The Treatment Centre is back in the hands of the NHS, not privately owned any more. I got the sense from my eye Casualty appointment that things were much more streamlined across the disciplines. I was impressed by how everything was coordinated at speed and I was treated correctly for suspected GCA within hours. I would have lost sight very quickly had I not been. Very grateful
I totally agree they were an impressive, cordinated team when I was diagnosed. And my blood sample packets arrive well in advance of my consultation. Guess we've been lucky to find Asha .!
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hip and groin pain after being on pred since oct 2016
Don't blame it all on the prednisone! Check things out.👩🏻⚕️ or 👨🏻⚕️
To take or not to take that is the question ?
Too many cooks, or GP's, spoil the broth?
