Persuaded GP to restart Prednisolone

[Breconblue]

So, as I have posted before, I have seen 3 different Rheumatologist. First one diagnosed PMR as result of rapid relief on Pred. On follow up and tapering to 1 mg then off, 2 no one said didn't think I had it. Three months off Prednisolone, and my symptoms worse than when I started it. Saw third Rheum ( privately) said not convinced I had,( due to feet and hand pain, said it was " knees to elbow disorder" ordered US scan on shoulders and wrists and electrical conductivity ( muscle ) tests. Under NHS and said he would see me NHS next time. No Prednisolone. That was 5 weeks ago, and I literally crawl out of bed, and when I get off chair etc. Not quite as bad when I get going. No sign of any appointments for tests or follow up, told it could be " months" so I gave in and went back to GP today. They are 10 minute appointments which I waited over a week for.i went in 10 minutes late ( ok of course) he hadn't read my Rheum outcome letter, or blood test results ( normal) so I had to explain all. Said he couldn't go against what Rheum had said and carry on with no treatment until I had scan etc. I was close to tears, and said I didn't care what I had, I had no life.. he started typing and I said can I ask a question while you type ( meaning to ask what the negative ENA signified, as he didn't mention and I only knew neg because I had phoned up) he said " I'm running late so only if it's quick" so I didn't ask I was so humiliated. Anyway I guess to get me out, he prescribed 15 mg Pred and said it was a pity I couldn't wait for the tests.. I looked at the clock as I left 10 minutes . I know they are busy but I feel completely miserable and upset .

[HeronNS]

I am so glad you got your prednisone. If it works - and why wouldn't it? - you will have ample clinical proof that you do indeed have PMR and need to be treated appropriately. Next time, consider taking someone with you to the appointment for support. You shouldn't have been dismissed this way as you were in distress. I once waited over an hour for an appointment and the reason was because the patient before me was in distress. It threw the doctor's schedule off for the whole day, but she had her priorities right. Hugs.

[Hidden]

Oh breconblue thats awful. How rude. Its really distressing when you ferl like your dr just not listening or interested. I hope he put the pred on a repeat too.

Its a pity he can't​ look at the patient instead of the computer screen. I feel your pain after an upsetting appt i had last week.

Take the pred so at least you start to feel better. (Do they think you would want to take it if you dont need it).

Hope you the pred kicks in asap. My cattle prod is always available for numpty drs. 🌻

[SheffieldJane]

I am really sorry that you had such a rotten experience. I hope you get total relief from the Pred.! If he could feel your pain for 5 minutes he wouldn’t have hesitated. Let us know how it goes. Sending a big hug. X

[Soraya_PMR]

Boo Hiss for uncaring doctors!

Hurray for pred!

Go on girl, sock it to them when you respond well with your 15mg. The proof is in the pudding so they say. Keep us updated daily, I really want to hear that you’re feeling much better, and then you’ll be in a better position to tell them their fortunes!

[Hidden]

Sounds like he could use a good ol' country boy BUTT Whoopin'.

[DianeA1]

So how are you after taking the Pred? Hope it helps.

[Hidden]

Oh, that’s appalling Breconblue, what a terrible way to treat anyone. I’m pleased you have the Pred, give us an update & let us know how you get on!

Kind Regards🌷🌷🌷

MrsN

[Blearyeyed]

So sorry for your experience , it is the waiting for treatment when there is confusion or disagreement in our diagnosis that is the most stressful and torturous thing .

We shouldn't have to go through it , and then be treated with such haughty disrespect and impatience , when in reality it is them that are at fault and deserve our gruffness for believing that it is acceptable to push people with a complex issue to get through all their questions in only ten minutes.

You should be very proud of yourself and celebrate a mini victory for being able to keep your cool and your persistence to get the support you deserve.

from me a big hug and pat on the back , hope things feel better soon , bee xx

[Neck680]

Good for you for hanging in there Breconblue. You deserve a gold medal, or at least to be relieved of pain with many refills available. How horrible for Drs. to be so thoughtless; it would drive me crazy. Feel better.

[Snowy12]

That is terrible you know your own body. Everything you read states blood tests are not a definitive for diagnosis clinical examination is . I hope you get some relief from the pred I really feel for you big hugs x

[Pippah45]

Shocking way to be treated - poor you. One of our GPs is a serial over run man but he always apologises and I always say "that's fine it gives me the confidence that you will give me the time if I need" and he would although I don't think I have run over as it happens.

[Hidden in reply to Pippah45]

When people next to me in the waiting area grumble to me I always say I don't mind waiting. I ask them if they would like being rushed out.

[PMRpro Ambassador in reply to Pippah45]

My GP gets everything done in one go - even if it takes an hour. If people don't want to wait it is sort of assumed they weren't ill enough! You are always seen the same day if you are willing to wait and there are better and worse days/times to arrive. We take our kindles and sit and read.

[Jackoh]

How upsetting and frustrating!! I suppose the main thing is you got what you went in for and do hope that this 15mg will start to make you feel a lot better. You got other things you didn’t go in for like disrespect , little time, and lack of understanding and empathy. I think if I had to go back to that GP I would ask for a double appointment to make sure I could hopefully get satisfactory answers to my questions next time.

[PMRCanada]

Sorry to hear of your awful appointment. I read about this a lot in hear. Seems like the patients need to put the puzzle pieces together and the doctors are in a hurry and hesitant about anything to do with pred.

My GP has 10 minute and 20 minute appointments, so I always book the longer one to ensure we have time to discuss all things PMR and knee replacement. Only thing is when I try to book an appointment outside of my usual every 3 months, it’s usually a 3 week wait, or you can try calling Monday morning to get an emergency appointment for same day, Tues or Wed each week. He is growing in popularity and no longer can take new referrals as he is so busy, but regardless of appointment protocols, he has never rushed me and addresses all my concerns before I go.

So glad you got a prescription for pred and hopefully some much needed pain relief. I’m still shocked to hear how people suffer with these conditions....if you went in with a visible external injury causing you pain I suspect they would not hesitate addressing the pain

[Joblow]

Well I had a surprise experience along those lines. I live in US and am a retired hospital nurse>30 yrs, and as such am not intimidated by doctors. So: end of last year felt I had PMR because I’d had it before, but no elevation in inflammatory markers had some local rheumatologists refusing to see me after my GP sent a consult because “no elevation in sed rate, she does not have PMR”. Well, I ended up flying back to Minnesota (from Florida) because I could get into see a rheumatologist there because of old work connections. So, yeah, the Minnesota guy diagnosed PMR and I’m on meds. But what I wanted to say about that is I had to write a letter to my insurance company explaining why they should pay for the Minnesota visit even though it was not one of the local ‘approved’ on their list rheumatologists. I explained everything and their quality assurance dept. called me yesterday to say yes, they’ll pay for it, AND they are going to look into the rheumatologists who said it wasn’t PMR because of normal sed rate because those MDs do not meet their ‘quality of care standards ‘. I had printed out and included with my letter to them web site info from both Cleveland Clinic and Mayo Clinic(highly respected facilities),both stating elevation of inflammatory markers need not be present). So that will make those rheumatologists sit up and take notice when the insurance companies stop covering patient visits to them.

[PMRpro Ambassador in reply to Joblow]

Hope this grows legs!!!!

[Hidden in reply to Joblow]

👍😁