please can I have some advice

[Wonderfullifeandmore]

Hi everybody I am at my lowest following my rheumatologists advice. I have beeen on 5mg of pred daily but have a real burning in my upper back emailed my Rheumy as I have had to go private. NHS 34 week wait. She said it was probably to do with my back injury which is 3 years old and yes it does give me pain. But not in the high up left side. Anyway I asked her for a scan she said book an appointment and I’ll see where the burning is first and arrange one.

the next thing I got was another email telling me to go down to 2.5mg of Pred for 3 days then stop altogether as I have no joint pain.

I went to see my GP as I have had a chest infection for over 3 weeks now. I told her about the pred she said do as your Rheum says.

I have been off since Wednesday and now have pain in my knee which is swollen also my hips during the night.

I have cancelled the next appointment with rheumy as I have no faith in her and I’m paying £215 an appointment.

I am now looking for a new one again it will be private as no chance of NHS yet all the private ones work on the NHS as well mostly.

I am at my wits end have never felt so low and desperate. Please can you give me some advice I feel like there is no one out there to help me.

Sorry for the essay.

[PMRpro Ambassador]

How long have you been on pred? Your bio tells us nothing about your PMR and pred history and without knowing a lot more there is nothing helpful we can say.

Almost without exception, private rheumies have an NHS post. In PMR a good GP is preferable to a poor rheumy (though yours sounds not in that category) and PMR is mostly managed in general practice.

[Mayadill in reply to PMRpro]

Almost without exception, private rheumies have an NHS post.

Maybe not so much today with so many of them taking early retirement.

[SheffieldJane]

Have you had an X Ray? I would be wondering if there was a connection between my chest infection and the burning pain in my upper left back. I would also be wondering if I should plan a camp out at A&E to access urgent services. You don’t seem to have very well informed doctors. Do you have any Pred left? You should never come off that quickly because of your Adrenal Function.

[Wonderfullifeandmore in reply to SheffieldJane]

Hi Sheffieldjane

I had an X-ray on Monday and the Dr said I had a residual of infection left, gave me another week on antibiotics. I’ve had this burning in my back since the middle of May. I was on 5mg of Pred the n, On the first face to face with the Rheumy she checked all my joints ordered 2 X-rays on my feet as my toes are very deformed and have been for several years but I have no pain in them. The X-rays showed thin bones. I have osteoporosis and my recent Dexa scan showed it has got worse. The reason my rheumy told me to stop pred was because I had no joint pain. But she knows about the burning in my back but doesn’t seem it links to my condition. Really I don’t know what my condition is the GP says Polymyalgia but the theme just said I have the rheumatoid factor. My last blood showed 11.2 inflammation levels that was taken whilst on 5mg pref.

This all started in April with both arms and hands really painful at night so much so I couldn’t pull my duvet up, also for a while in the morning until I got going.

Thank you all for reading this I am floundering.

[PMRpro Ambassador in reply to Wonderfullifeandmore]

You wouldn't have joint pain with PMR. The pain is in the soft tissue around the joints ...

[Wonderfullifeandmore in reply to PMRpro]

Hi, thank you for your reply that’s something I’ve just learned about PMR My rheumy ordered a blood test for the connective tissue and she said it came back fine? There is so much I have to learn about all of this I’m trying to read as much as I can to educate myself. I am also suffering with real bad depression .

[Mayadill]

Where are you? I know a good guy in Sussex. He's retired from the NHS but still working at a local private hospital where his bio page says he has a special interest in PMR. I only saw him once but with hindsight it was a critical consultation and he did all the right things and none of the wrong ones! 6-8 months after diagnosis, having come down happily from 20 mg, I flared badly at 10 mg and put myself back up to 20 mg. My GP referred me back to the hospital, by which time I was OK on 17.5 mg again. I had a long and leisurely appointment in a half-empty hospital (lockdown), a thorough physical examination and then CT to check nothing else going on, after which I was referred back to my GP to just go on reducing, but no time-frame demanded.

[Wonderfullifeandmore in reply to Mayadill]

Hi I am in Kent. I have a rheumatologist who gives me 6monthly injections for my osteoporosis. I asked his secretary if I could see him for the rheumatoid problem she said he has a waiting list of a year. But I did some research and he is working privately at two local hospitals to me so I have applied for an appointment to see him privately. Just have to wait for a reply. He is a Professor so I’m keeping my fingers well and truly crossed. Thank you for your reply Mayadill.

[Pusph in reply to Mayadill]

Hi, I'm in East Sussex and would be very interested to know who this doctor is and where he operates from please if possible as I don't have much faith in my present GP.

[Wonderfullifeandmore in reply to Pusph]

hi Pusph,

He works privately at two hospitals in Kent and also for the NHS at two different Kent hospitals.

[Mayadill in reply to Pusph]

Hi. Dr George Papasavvas, Montefiore Hospital, Brighton

themontefiorehospital.co.uk...

[Mayadill]

Brilliant! Touch wood help at hand.

[piglette]

Good idea looking for another rheumy. This one obviously does not know about PMR.