Rheumy - grrrrrrr!

Sorry but time for a bit of a rant. 2nd appointment with rheumy this morning. Same one who diagnosed PMR 4 months ago (after I'd been on steroids since January) and was happy for me to manage my steroid withdrawal. I'm currently on 8.5 mg. He now doubts his diagnosis and wanted me to reduce at 1mg a month to 'see what happens'! Because my ESR levels have not risen since GP first suggested PMR he now says it can't possibly be that. He also informed me that PMR is an inflammatory disease, NOT an auto immune disease. Anyway I argued that 1mg a month was far too fast and he finally agreed to half mg per month. I have a feeling he is going to write to GP with his instructions to continue to reduce no matter what. He says if I do that and the pain comes back, then he 'may' start steroids again and I 'may' be an atypical PMR sufferer' I left hospital very annoyed and feeling totally unlistened to. He wasn't interested in the fact I feel fluey and quite ill a lot of the time and very, very tired. He just said that could be anything!!

Oh well, rant over. Thanks for listening. Let's see what some of you think. 😖

22 Replies

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  • What amazes me is that they seem to want to try things out to see what happens, but do not seem to take into account that we might actually be in pain with their latest bright idea.

    I talked to my GP this week as my legs are very stiff and painful, my CPR had risen to 11 and ESR to 60. Her suggestion was that I should try and reduce the pred a little. Doesn't she realise the reason I am taking pred is to reduce the inflammation, so if my inflammation markers have risen it is probably not a good time to reduce. Definitely not joined up thinking.

    The other thing that happened was I got three months supply of pred from the pharmacist only to discover it had a sell by date of next month! Why don't they check?

  • Your inflammation levels are rising - and you are to REDUCE the antiinflammatory medication?

    I'm having a Victor Meldrew moment...

  • I am beginning to wonder if I have gone to sleep and woken up on another planet sometimes. Common sense is dead.

  • LOL.....here we have an expression...."am I on Candid Camera?"....an old TV show where people were told or shown outlandish things and then someone would shout....."Smile.....you're on Candid Camera"....and told it was all a joke....I find myself quite often looking for the camera 😳😜🙃😂....

  • I remember Candid Camera. I liked the left handed tea cup!

  • I seem to detect a hardening of the one thing per 10minute GP appointment principle New bonus/penalty system?. Only one thing inevitably means no joined up thinking possible.

  • I know what you mean, but if you can deal with three things in ten minutes, why not do so, it's much more efficient. Especially if they are probably all related as they seem to be in my case. I think the problem is older people and people with chronic illnesses need more time and there is nothing we can do about it. I have NOT been a drain on the system over the years. Years would go by when I wouldn't see my doctor at all, or maybe for a referral for physio, or the ten year polio-tetanus booster. But he never made me feel like I was wasting his time, or give the impression he was rushed, if I asked about other things at the visit. He was nearly always spot on time, too. I miss him more and more now that I realize how exceptional he was. Perhaps if he hadn't retired just before I became an interesting patient I wouldn't have suffered undiagnosed for so long, and he would at least have checked any painful limbs. The young doctor who didn't diagnose me never touched me, never checked my range of motion, nothing. What do they teach them in med school these days?

  • Jeepers - what is he on? Has he passed his rheumatology exams? What does he think autoimmune disorders do? Exactly WHERE does he think the inflammation comes from?

    I despair, I really do. Just as you think things are getting better something like this appears on the horizon. And I'm going to ask my usual question: at what point will they stop telling the 50% plus people they say are atypical that we are atypical? There are a lot of us!

  • How frustrating for you, Spiritofhilary. I don't know whether to be happy I'm not alone, or depressed there are so many of us. In general I like the way my relatively new to me GP handles my PMR (she lets me control all reductions). But I had a list of things I had to bring up and deal with in very limited time at my appointment Wednesday. Among them was, "What might be causing the fairly serious leg pain I get, more and more often?" And without asking me to describe the pain, when and where I experience it, is it like PMR pain (no), she said she wasn't worried about it. Full stop. Stands up, signal appointment over so I leave. Sigh.

  • My new rheumie got me to have twelve blood tests. When I asked about them from the nurse at the surgery six weeks later the nurse said she could not look at the results as the rheumie had not yet opened the file to look at themselves herself. What a waste of money.

  • You've just made me less irritated that a second rheumatology appointment has been cancelled by the hospital 'due to unforeseen circumstances'. I've now been waiting three months but perhaps if the advice were to be as nonsensical as that given by your rheumatologist I shouldn't be too annoyed. Do hope you feel a bit better now.

  • You seem to have the same experience as I had with my rheumatologist, he didn't want to listen to me, couldn't decide on diagnosis, and the letter he wrote to my GP seems complete fabrication. Think my post earlier was "feeling unheard" if you can find. I ask for a second opinion, so am going through the process again.

  • Last week I had a review appointment with my GP and 2 days later a Rheumy appt. Saw Gp told her about all my weird symptons including ing Tendonitis in both ankles, leg pain, flares , she stuck to her long held opinion that everything I have is due to side effects of Pred. Her conclusion "we must get you off Pred ASAP"!! I have just got down to 6 using the slow method, she wants me on 5 already. Two days later, Rheumy appt. His verdict - "Don't be in too much of a hurry to reduce, take it slow"!!!! Help. 😰

  • Pebble-Sue, stick to the slow reduction as it is working for you. "It isn't slow if it works". It took me three months to get from 3 to 2.5, but it worked, I've been stable so far for several weeks and will wait a while before attempting another .5 reduction. If you are able to gradually reduce your dose you'll be at this level before you know it, and it's generally considered that side effects are quite negligible below 5 and certainly by 2. I, too, have unexplained pain in my legs, a deep-seated ache which doesn't remind me of PMR at all, I think it's probably a circulation thing, but my doctor just dismisses my concerns. It started when I was probably at around 4 mg, not sure. Six months ago.

  • Thank you Heron, I will continue with the slow method, it is working for me. I have learned thro experience not to upset the GP by venturing an opinion, I just nod non-commitally and carry on following the Rheumy's advice. I only go to see her when she sends for me to do a review. They hate it when they think we are actually researching our own illness and how it can affect us, yet if they took some time to learn a little bit about PMR, they would be a bit more clued up on how to treat it properly.

  • Hi HeronNS I had awful pains in my legs they felt really heavy wanted to chop them off couldn't get to sleep at night, it felt a bit like restless leg syndrome, manage to get down to 5mg of steroids went to see Rheumy told him I couldn't stand the pain any longer he started me on 10mg Leflunomide within two weeks all the pain and swelling disappeared from my legs, not sure what was wrong with legs but definitely cured all my leg problems.

  • I'm glad you found a solution. I see leflunomide is used for RA, do you have RA? My pred dose is only 2.5 now and I have never had swelling.

  • Hi HeronNS no I don't have RA, Rheumy told me they do use it for that but they use it for other auto- immune diseases also, he isn't really sure what else is going on besides PMR as my knees and legs were swollen.

  • I'm glad that the treatment worked for you. I wonder if mine is something as simple as muscle weakness caused by pred? If that's what it is, I should start to get better soon, if I can stay at my current low dose. Fingers crossed.

  • What an arse!

  • hi spiritofhilary,

    I really do not know how you all manage sometimes. I read all the posts and learn more and more. Often I do not comment because I just don't know what to say but I love to hear rants cause then it means I am not alone. My rhuemy's pretty good but I always still feel that I have to take the bull by the horns so to speaks and slow down, he is always receptive but I wonder what would happen if we were not our own advocates it scares me especially as I get older. It is hard enough to explain CGA and PMR to friends and family but just plain frustrating when you have to explain it to your own doc. Yes they certainly do not know how we feel but we sure do, tired, fluey in pain and just pain shitty. We all eventually get we need to be on enough pred to control the inflammation .......Out of a desperate need to feel normal I actually had a blue streak put in my hair that is finally growing after losing most of it on metho. Perhaps it makes make moon face moonier BUT the blue brings out my blueberryness and I no longer feel invisible......... you should all get a blues streak its hilarious listening to grandchildren asking gramma did you know you have blue hair or younger people saying yah that looks really good. I also wear an interesting hat cause it gets lost of comments.......I went to the retirement home where my dad lives and one of the residents asked me if I lived there....Not yet I said and proudly walked away with my blue streak!!!!!Hang in there and do something unexpected!!!!

  • Thanks Deb61 - you have made me smile and that's very welcome. I think I might at least take up the idea of an interesting hat. You're right, you have to fight not to be invisible!

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