Appointment with Rheumatologist

[Bramble2000]

Hello, I had an appointment with my rheumatologist yesterday. It was by phone at my request. He gave me TWO MINUTES!! During those two minutes he said, “what’s all this inflammation about”? I said, it’s PMR, as shown on the CT a year ago. He said, “we’ll see”! This guy does my head in at the best of times but I’ve really had enough now. Are we entitled to be seen at a different hospital under the NHS or am I stuck with him? 🫤.

[DorsetLady PMRGCAuk volunteer]

You can request another referral - but I think its a bit hit and miss depending where you live...

[sidra1968]

Geez..definitely try to find someone else. My favorite was my pain management Dr. (who knew I was a very happy person naturally) told me I was "just depressed" LOL!! Well, yeah I was upset after a year of pain, and no one could find out what was wrong with me and my life was sitting in a recliner all day. Would he be doing happy backflips if was him?

[Bramble2000 in reply to sidra1968]

I was told for two years by this guy that I categorically didn’t have PMR because I was 48/9. Finally sent me for a CT and it lit up like a Christmas tree. Then to ask me yesterday what all this inflammation was about in my blood! It’s a good job I wasn’t in front of him in person!!

[sidra1968 in reply to Bramble2000]

My GP originally said I was too young at almost 55. I set him straight using people from this site as examples, and of course agreed to rule everything else possible out first. I have been lucky though, as overall he has been very good about letting me treat myself with the pred as necessary - and finally believed it when my ESR went UP after 5 weeks at 30 mg. I enjoyed that exchange

[winfong in reply to Bramble2000]

My original GP thought I had a "virus." I switched docs and my first meeting with my new doc, the first thing he said was, "I see you've lost 20 pounds since your last visit," then lined up a bunch of tests and referrals to specialists.

[123-go]

Is he the only rheumatologist in the department? If there is another you are entitled to ask to see her/him instead. I was told this by a nurse in my clinic after an unsatisfactory consultation. Subsequently, I wrote to the department saying that I didn’t want to see Dr…..again and for my request to be recorded in my notes. If there is no other rheumy you might consider ringing the clinic secretary to ask that the clinical nurse specialist ring you so that you can you can politely express your dissatisfaction and ask what she suggests.

Some ‘professionals’ should not be practising!

[CavalierKC3]

is this at the Norfolk & Norwich Hospital by any chance. I also have been suffering a lot of pain stiffness etc & rheumatologist said no way PMR , I do have GCA, & would I like to see someone else as I obviously didn’t believe him. I said yes & he immediately started to dictate a letter, crossing me off his lists & putting me with someone else. Other Rheumy willing to take me on but no idea when I can get an appointment

[Bramble2000 in reply to CavalierKC3]

No, I’m in Brighton

[PMRpro Ambassador]

I think we have suggested you seek a second opinion before. DIscuss it with your GP - and cite breakdown of a trusting relationship. I wouldn't accept being treated like that.

[Bramble2000 in reply to PMRpro]

I did. I saw my old Rheumy privately who said I didn’t have PMR despite the CT clearly showing it. He said they NEVER diagnose it in someone my age and that my pain is all from my AS. It isn’t. I just don’t understand the fight over this. We’ve ruled everything else out including AS in fact. It’s clearly on the CT, ESR AND CRP have been high in direct correlation with my pain and steroids get rid of it. It’s just so hard to keep dealing with these people when all one wants and needs is a little understanding and not to be questioned all the time.

[Gimme in reply to PMRpro]

Thankyou for saying that. We've already discussed my grumpy rheumatologist aka Mr Dodgy Crystal Balls before. I need an appointment some time over the next few weeks to discuss current progress (or lack of it) and I have been dreading the possibility that I might have to face him again. You are right. I don't have to accept that and I won't.

[Missus835]

Sounds much like my phone consult with my rheumy yesterday. Rushed right through. She was 3.5 hrs late. She has never been on time. Then had to go and cut me off. If it weren't so difficult to get a Rheumatologist here in Halifax, I'd ditch her. Thank goodness we weren't paying for parking as for one of her in-person consults. The only time you actually get to speak with her is on a pre-arranged 3 month follow-up. At least I finally have a GP.

[Bramble2000 in reply to Missus835]

I grew up in Lightcliffe near you. Miss it very much.

[Bramble2000 in reply to Missus835]

How on Earth are they allowed to get away with being 3.5 hrs late??!

[Missus835 in reply to Bramble2000]

I'm in Halifax, Nova Scotia, but would love to visit Lightcliffe. My roots are UK. Barry, Wales. I don't know how she manages to get away with it. Even with an in-person, she's always late and never fully engaged (little eye contact). I am a stickler for being on time or early so doubly perturbed. I have ongoing problems next to PMR and had a lot of questions after 3 months. All the best with your rheumy and thank you so much.

[Andos16]

I'm in Australia and saw a Rheumie 4 times, privately! Each time I felt that he didn't listen and could be unempathetic. Before an appointment, I write down what I feel I need to say but he constantly interrupted brusquely.

In August I mentioned that I had a shoulder problem, shooting pain down my left arm, maybe a trapped nerve? He just gave me one of his looks (like I am an idiot). So I said I would talk to my GP. I had an ultrasound, which revealed bursitis and I had a cortisone injection. So in Dec he said if I had asked him (which I had), he would have told me bursitis is PMR related and a cortisone injection was not needed.

He didn’t like it when my GP and I increased my Pred temporarily to deal with pain. He said his job was to get my Prednisone down as soon as possible and that is not “rocket science”. Not apparently interested in pain management. When I asked if my recent wrist pain was PMR, he just said I don’t know.

I am also experiencing an adverse effect on my mental health, think he asked me once about that.

And of course he doesn’t like the info I have found on this site:

taking Presnisone at 4.30am which I did earlier this year.

tapering at 0.5mg every two weeks instead of 1mg a month.

problems going from 10mg to 9mg

steroids not working for everyone

And he said I am young to have PMR (68!!). Someone recently commented my Rheumi should get out more. Correct. I have just sent him a letter with all of above. I won't be back!

I got lot more help from my pharmacist who has suggested to my GP that I go on Mobic/Meloxicam whilst I taper off the last 5mg of Pred.

[DorsetLady PMRGCAuk volunteer in reply to Andos16]

Someone recently commented my Rheumi should get out more. Correct.

Guilty as charged m’lord… 😊

[PMRpro Ambassador in reply to Andos16]

"bursitis is PMR related and a cortisone injection was not needed."

Funny - MY rheumy, who has probably forgotten more about PMR than that guy since he is a world leader in the field, is perfectly happy to use steroid injections for bursitis when the oral dose isn't helping. That is tantamount to obtaining money by false pretences if you ask me!!

In fact, he shouldn't "get out more" - he should get out of rheumatology because he hasn't a clue what it is about. His job is NOT "to get my Prednisone down as soon as possible and that is not “rocket science”" - his job is to ensure your disease is well managed and accompany you on that journey. And for bedtime reading I'd recommend this

pubmed.ncbi.nlm.nih.gov/368....

[Andos16 in reply to PMRpro]

Thank you, my feelings exactly!