Saw NHS Rheumy Dr Khan at William Harvey Hosp, in Spenser Health wing on NHS last night 7pm now confused!!!

I took letter from private consult I had on 30 Jan, from Dr Campbell at Orpington. Who put me of 7 days of 15mg pred. He said unless I showed dramatic results he would not diagnose PMR. I did have dramatic results, 3 to 4 days in improved movement less stiffness, no pain in back or pelvis neck and shoulders. Saw Dr Khan at WHH Private wing on NHS, took letter, details of my improvement. He was looking at my MRI scan results from August re: Spinal stenosis and mild degeneration of bones. Focussed on osteoarthritis in neck, and lumbar spine. As my ESR and CPR never shown inflammation, he is not convinced I have PMR, he did physical check clothed, with nurse, strength in arms and legs, and movement. All ok now! I asked about DEXA scan, said no point as I would not be on Pred for long. I challenged normal ESR and CRP saying 20% of people with PMR don't show inflammation levels, he said it was rare and he had not seen many!

So, he put me on 15mg Pred 2 weeks, tapering in 2 week intervals by 2.5mg to 0. And see him again beginning of May. It was a really horrible journey, wet and cold left home at 5, got back at 8.20pm, buses and train. Felt really confused. He said he would write to GP and suggest I could have 2nd opinion with NHS person, but I had a private one already, who incidentally he trained with!!! Really don't know what to think, on top of that he said the stenosis in my spine would get worse at least 1% a year, and it could be dangerous to operate as it's in a difficult place. A friend of mine had op recently, and she it greatly improved! Yes I have arthritis and stenosis, but do I have PMR too? Who knows, not me.

Feel really depressed now, took diazepam last night as well as mirtazapine, awake at 3.30am, up at 4am took 2mg diazepam, still couldn't sleep, so up at 5am and typing this. I have to get bus at 8.15 as I am taking my grandson out, bad timing. Just depressed, upset and confused, my futures not looking very positive, my ribs still hurt on right side from pulled muscles since 13 Dec. Probably need physio, who knows Bowen therapy, won't get that on NHS, will cost £100 for 3 sessions at least. Sorry to go on, am on my own and no one to talk to. Forgive me, but I am peed off!

[DorsetLady PMRGCAuk volunteer]

Hi denhen,.

No wonder you are peed off!

Just because he hasn’t seen many with non raised markers doesn’t mean it doesn’t happen! What a stupid comment.

If you have a good relationship with your GP think you need to get him on side, and hopefully you can get him to consider your predicament. Perhaps once he’s got Rheumy’s letter you can discuss and say you are willing to try the reduction plan suggested, but if you get into problems with it (which you surely will if it’s PMR) perhaps he could liaise with Rheumy and come to a more sensible solution.

Sorry, but don’t know what else to suggest.....unless a second opinion is an option.

[Hidden in reply to DorsetLady]

Thanks. I don't know what to think. Maybe it isn't PMR, maybe it is just the OA and stenosis. Don't want to be on steroid, if not necessary, all I know is that by day 4 I was less stiff and pain free and felt really good. He said steroids do that anyway, and they are not used to treat OA. I just feel deflated. I may think about seeing Dr Rod Hughes, as everyone seems to think he is really good. I'm just tired and have a busy day to come with my grandson, don't want to spoil it for him.

Thanks very much.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Maybe it’s not PMR, and I think the man to confirm that is Dr Hughes if you can get to see him.

It’s true steroids do mask a lot of pain, but I’m not sure that 15mg would be sufficient to mask all of yours - but difficult for me to say...as I started on 80mg and that zapped everything. Can’t remember what level I was at when OA pains came back.

[SheffieldJane]

Sorry that seems to have added up to a pretty negative experience all round. I do urge you to see Dr Rod Hughes. You have complex conditions and need someone to sort out your diagnosis. I have Cervical Spondylosis and degeneration at the bottom of my spine. PMR has by far, been the worst pain. I do know that despairing feeling in the cold and the damp. Let’s hope it is just the dark before the dawn.

[Hidden in reply to SheffieldJane]

Yes. I have arthritis in neck since 2008. Recent last year or so lumbar spine and stenosis. Extreme limits in mobility, and fatigue, so really confusing to define cause and effect. Don't feel like starting pred again just for 12 weeks. Seems pointless, will just be back to square one!!! Sorry just exhausted. Will get sleep later and have fresh perspective. Thanks.

[suzy1959]

I have just seen from your previous posts that you are in Ashford. I am quite nearby and you can message me anytime you like.( 6 years into this journey!) Do you know about the drop in group that meets on 3rd Monday of the month in Maidstone? Details on the PMRGCAUK website, although maybe you want a diagnosis first? It took me 2 years ( and Rheumy number 3- Professor Dasgupta) to get a definitive diagnosis, so don't give up!

Also, I see Dr. Hughes on the NHS, having exhausted the local useless Rheumys. He is very mindful of the distance but is willing to continue to see me if I want. I have found seeing him on the NHS much better than seeing all the previous ones privately. The service at St. Peter's is excellent!

Good Luck !

[Hidden]

Thanks to you all. I will talk to lady dr tomorrow and see if I can be referred to dr Hughes, ironically I lived and worked in Chertsey area for many years. Its all very complex. Like many say it's a long journey to enlightenment!!! I'm use to pain so know what to expect!!! Great advice.

[PMRpro Ambassador]

I'd be pee'd off too - and I hope you have a sensible GP who will act on the original "if you get a good result ..." and the fact you DID get a good result.

What an appalling doctor and what a stupid comment - he isn't a world expert ... There must be something about Kent - it attracts the plonkers, we have noted that. In fact, in over 8 years i don't think I have heard reports of a good PMR experience in Kent. One lady had to go to Leeds to get the correct diagnosis which turned out to be anklylosing spondylitis - which responds to other things better than pred.

Pred does NOT make everyone feel better, especially at 15mg, and I wish I knew what makes some of these idiots think it does.

[Hidden]

Yes. Thanks. Doesn't help, as I said before that my gp added all past history including personality disorder, I don't have, plus overdoses from 35 and 17 years ago. I actually have bipolarIl. This definitely makes dr judge you, and has caused me much more anxiety and stress, which is something else I have to address with GP. Nightmare. Thought they were supposed to do no harm!!! Feel really down over it all and let down and will tell GP tomorrow!

[PMRpro Ambassador in reply to Hidden]

Yes - I gather that is a common problem and it is disgusting. Mind you - there is a bit of a difference between bipolar and personality disorder - so where else is that info wrong on your notes?

I tell the story of a gentleman of middle-eastern origin deciding I was an alcoholic - because my husband happened to mention an episode of transient global amnesia happened the day after I had had a glass of wine with dinner - and the guy treated me like a bit of muck on the floor. In a UK hospital. I found out because he sent a "banana bag" to be infused - a bright yellow vitamin mix used in acute alcoholic withdrawal! I told my GP who fell about laughing at the idea but that doesn't alter the fact that will be on my hospital notes for life...

[Hidden in reply to PMRpro]

Makes you wary of speaking to drs.

[Soraya_PMR]

Hidden

I’ve just checked out the rheums that cover WHH. One of them is the one I see at another hospital in Kent. Female. Dr DDL. I have found her quite approachable, accepts I have PMR with no raised ESR/CRP. She has sent me for many blood tests (that GP didn’t do) and was quick off the mark sending me for an urgent CT contrast scan when I showed her strange BP recordings. (That my GP surgery refused to do!!!) She suggested she took over my care as GP had ‘abandoned’ me. Basically a far more positive experience than I expected, and I was really in the doldrums after my GP ‘discussions’. GP wanted to blame hip arthritis for my hip pains (x-ray shows no arthritis) and chronic disc problems (I have lived for 20+ years with back issues, I knew this was not the cause) and he stumbled when I asked how these 2 issues could possibly affect my shoulders. Rheum was aware of these issues and discounted both.

If you need any clarification, feel free to PM me.

[Hidden in reply to Soraya_PMR]

Yes. Dr de lord. Looked her up. Thanks. Will discuss with Gp. Thanks.