I had a rare face to face appt. at rheumatology at the end of June and once again felt the doctor wasn't really listening. I was on 2mgs of Pred and i told him i have trouble getting below this,he still urged me to reduce to 1mg and stay on 1mg for 2 months instead of 1 but i went down to 1.5mgs and i'm not too bad but still feel the PMR is still there, upper arms and thighs still feel stiff at times and the amount of walking i can do has reduced again. My blood test came back normal but i wasn't given the exact results. The letter i have now received has said that i am now in remission and i am to come off Pred altogether. I've been on 1.5 for nearly 2 months now but still don't feel ready to go down to 1. The rheumatologist has now discharged me from the clinic even though i don't think it has gone into remission. It feels like because they're so overwhelmed he just wants me off the books, one less patient to deal with. they weren't much help anyway so i just hope if future problems arise i can get help from GP surgery but seeing as they are in a bit of disarray at the moment i don't hold out much hope. Has anybody else had similar experience?
Disappointing letter from Rheumatology. - PMRGCAuk
Disappointing letter from Rheumatology.
Sounds like good riddance to me and I do hope you can find a GP who will listen to your reports of inabilty to get lower. After all, although it probably is the PMR, it could be adrenals-related and that really wouldn't like pred being removed all of a sudden.
Quite a few have been signed off at low doses - it isn't that uncommon.
O I see, thankyou. I didn't think they discharged you until off Pred.
Sometimes a rheumy will discharge patients straight back to the GP having confirmed or decided it is PMR. About 75% of patients only ever see a GP.
I am sure that is true. Are there any data showing that 75%? I want to quote that.
Ask piglette - she quotes it and may have a source.
This was the prequel to finding out I assume
ncbi.nlm.nih.gov/pmc/articl...
Still looking for their results! I lose count with Sara and co's publications - too much statistics in them ...
Another 2 of their papers with good summaries relating to PMR treatment:
I was discharged by Rheumatologist after 9 months for GCA by mutual agreement, as we didn’t get on. I have managed with GP just filling perscriptions and assistance from this site since (approx 2 years). I find it easier to taper on my own timescale, as long as GP perscribes pred, much less stress than trying to meet timescales provided by docs.
Thankyou, yes I have largely been doing my own taper. My only concern was that now the GP surgery received the letter they may stop my prescriptions.
See the GP and tell them how concerned you are - including the rheumy not listening! Don't pull punches, don't gloss over things!
Yes I will do if I ever got the opportunity, you have to go through a questionnaire on a website now to get triaged at our surgery now. No doctors based there anymore, it's some sort of group.
What I couldn't understand was why the rheumy said I was in remission when I'm still on Pred even though its a low dose.
Because he is one of the misguided cohort who thinks that if your ESR/CRP is low, it means the PMR is gone rather than that you are on enough pred to manage the inflammation being created, That really ISN'T the same thing! You ARE in remission - but it is drug induced remission.
Agree with PMRPro, tell the GP exactly what you think. And if you are upset, don't be in the least afraid about bursting into tears so that they can see how upset you are.
I am not as far down the road as you, but have been feeling increasing despair at the lack of support and was about to throw in the towel and try to manage myself, but I had a couple of wee tantrums over the last week and now they know exactly how fed up I am. My main complaint was that I wasn't being listened to or being treated as a person by the rheumatologist and so I was booked in with a GP who was supposed to be a good listener. And she was, plus she seems to have a lot of experience of PMR. Net result is that I am getting more support around what the pred is doing to my brain and a mutually agreed plan on managing the PMR symptoms. She is the first doc that I have spoken to who really seems to understand how absolutely horrible it is to have this nasty illness. And I feel happier because I am feeling more like a person with feelings instead of an anonymous clinical case to be got out of the door.
It is all very well having the stiff upper lip or trying to remain in control, but some times letting it all out is the only way that they get the message about how rotten you are feeling. Funnily enough, I almost started a thread asking whether it was even worth seeing the rheumatologists as they seem so stuck in their ways, but my experience yesterday and over the last week has made me believe that they do have their place and have a lot to offer, but what will get you through this journey will be having good support from an understanding GP and who will fight your corner, if necessary. I think my problems stem from lack of continuity in care and inconsistent advice and I am hopeful that will improve now.
You are entitled to your medical results by law in UK now. I always ask for mine. Hopefully you can just get your GP to prescribe your steroids. Some rheumatologists seem to be totally useless. I have got through four!
Yes. I was referred back to GP, and taken off Rheumatology lists. Rheumy had done all they could to help me, & I was happy to be back with GP. I wasn’t referred to Rheumy for PMR, but for osteoarthritis. I was re-referred due to symptoms of RA, and PMR was then discussed, but only as a side issue, really. I was given booklets to read for the other two diseases I was diagnosed with, as the Rheumy said there was nothing they could do at all to help with them (hypermobility & fibromyalgia).
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