I had my second appointment yesterday since being diagnosed with PMR and GCA last September. I am pleased to have printed out and presented him with my dosage record from your website - very useful. I also use it to note any symptoms at the side. I started on 15mg pred, upped to 40mg 2 weeks later once GCA diagnosed. I'm now down to 17.5mg. He explained to me that the next step is to keep going reducing by 2.5mg a month to 10mg then reduce 1mg every 6 weeks down to nothing. (It will take until April 2023 to get to 1mg). He doesn't want to see me again for another 6 months. I asked him what to do if I get a flare - should I take more pred? He said not to without ringing one of the nurses first, as it might be withdrawal. He said the aim is to get me off the pred completely.
I told him about the people on this forum who have been on pred for years and he said that only happens because they keep adjusting their dose up and down rather than a steady decrease and they become dependent on pred. I think this statement might annoy some of you!!
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Well you should have told him we discuss the difference between steroid withdrawal and a flare regularly- so you know the difference! Hope he’s got a flak jacket on!
It is also his opinion without ever speaking to the patients it happens to. I don't raise my dose except in relation to a flare - I have flares of disease activity, not due to having reduced my pred dose too far. And I am not alone.
And he is also wrong - in the long term the aim is to get off pred altogether, but there is no fixed term for doing that, individual patients need pred for longer and in the short term the aim is to find the lowest dose that manages the current symptoms as well as the starting dose did. A relentless reduction of the type he uses is ignoring the differences in type of PMR (no doubt he disagrees with that too) and individual patients.
You don't surprise me. That is what I am encountering with NHS Rheumatology too. I think 0.5mg rather than 1mg every month under 10mg might be negotiable with them.
I feel really strongly that many rheumatologists dealing with PMR/GCA are not as 'informed' as they could or should be and don't fully understand the way the disease actually operates within the human body. People who suffer from the condition will all have their own unique and individual experience of it, mainly because there will be other ailments impacting on the progression of the disease and other underlying factors that will determine the effectiveness of the medication.
There simply is no 'one size fits all' scenario where managing this condition is concerned.
Nobody ever wants to be on steroids, but this is the only treatment available at the current time. Steroids won't cure PMR/GCA...they simply reduce the inflammation.... and if you're not taking enough to counteract that then the inflammation will continue to build up and start to cause damage to your organs and systems. This is called a flare, and the reason why the dose may need to be increased.
No one wants to increase their dose without a legitimate reason, but it most definitely is necessary for most people at some point on their 'journey'. A flare can happen for many reasons...it might be as a result of too much exertion, too much stress,etc, but sometimes it can seem to occur out of the blue and for no obvious reason.
There is no time limit that can be apportioned for recovery and I know categorically that a tapering plan may sound ideal but it won't work effectively if it doesn't correspond to the status of the disease at any give time.
I respectfully think your rheumatologist needs to refresh his sources of information regarding the treatment of PMR/GCA because his comments are somewhat insulting to the many of us who are dealing with and managing.... quite successfully for the most part....this poorly-understood disease.
Kendrew well said. This is Dr Mackie's approach - Broseley tell your rheumie to give her a ring! Even Dr Chetan Muktyar who got guffaws of laughter when he first espoused his ideas about treating GCA as the charity's AGM a few years ago has changed his approach going by the great write-up in the last Newswire magazine. News seems to trickle down very very slowly in the medical profession, shamefully
I had a rheumie appointment this week and had a CRP and other bloods in advance. I've learned over the years that how my body feels is mirrored in the blood tests - that's not the case for everybody I know, some people's PMR doesn't show in bloods. My lowest ever reading was around 6 when things were well under control a few years ago and the highest about 24-28 in a big flare last year and when first diagnosed. So I said to my rheumie I was feeling quite well and sprightly, just a little bit of stiffness, and therefore guessed my reading would be about 8-10. I was spot on, and she was amazed. I said I know my body and what it needs after all these years. She was happy for me to stay on my current dose as it seems to be working well. If you reduce too fast or too soon you just end up yo-yoing as I've learned from bitter experience under direction of other ignorant rheumies forcing me to reduce.
That makes absolute sense to me. We really have to be the 'puppeteer' in all of this....we are the ones actually living with the disease and every decision impacts on us and us alone.
I do actually think there is a gap in the market for a book called something like 'how to talk with your doctor' - and one for doctors 'how to listen to your patient' LOL
Lucky you. I have to have the blood test at the rheumy appointment. I don't get to see the results, neither does my GP, only any that are 'abnormal' because he refers to them in his letter. I have to ask each time for a copy as their system can't deal with ticking a box to send all letters to me. Last time I phoned and one of the nurses went through all the results with me. Turns out one of them was high - for me. I keep a log of all my blood results so I know what my 'normals' are.
I email my rheumie in advance of my appointments and she puts the bloods request on the system so I can turn up and have them at the hospital any time, then I have the tests a few days before my appointment.
I'm glad too when I read all the stuff about rheumies on here. Only seen rheumy twice. First time when they thought maybe I had GCA and second time for results of temporal biopsy which were clear 😅 He referred me back to GP to continue care.
I didn't have any jaw pain. Was a terrible headache which I knew wasn't migraine. Doctor had warned me watch out for unusual headaches when I got PMR diagnosis. Went to doctor who called rheumy for advice and was put on 60mg right away till I got biopsy. Unfortunately they weren't so quick to tell me to stop with 60mg and I had a few sleepless nights etc on high dose. The merry go round that is PMR ☹️
That's interesting. So no jaw pain no GCA. My headache wasn't too bad after the initial dose of 15mg for PMR, it was at the back of my head and was worse when pressing against a pillow or the back of the sofa. The jaw pain and stiffness also went away on 15mg, but because the headache hadn't completely gone the GP insisted I went for an emergency assessment where they gave me 60mg pred as a one off then 40mg as a dose from then on (to taper down from). I'm now down to 17.5mg and no return of the headache though I do get the odd twinge in my temples (which I never had before). I'd be interested to hear how your experience and symptoms compare.
I've always been prone to migraines but they eased off after the menopause, lucky to only have then occasionally now. As I said, doctor warned me to watch out for symptoms including headaches and this one was a belter and my typical migraine. 9 When I did phone the doctor I actually got to see her that day! Even pre covid that was unusual. The headache lasted about 3 days but had gone before I got biopsy. I had been put up to 60mg when doctor phoned rheumy for advice as I already said, unfortunately they took an age to tell me to drop back to 15mg. I would question that now, but this was early on my journey and I assumed doctor was on the ball 😏
Wow, did you drop back to 15 in one fell swoop without tapering? It does sound like you had a migraine. My headache wasn't at all typical for me. I'd never had one like it, especially as it lasted 3 weeks. In fact I hadn't had a headache for 20 years. Before that I used to get thumping pains in my right temple brought on by excessive activity in hot temperatures. I learnt how to stop them by dousing my head with cold water as soon as I felt one coming on. Got a few funny looks if it was in public!
No my typical migraine involved flashing lights, aversion to light, sickness and frequent toilet visits. Very inconvenient when I was a young mum. Not easy to shut yourself in a darkened room with a toddler around. That headache was just one of life's mysteries 🤷 Yes dropped back to 15mg with no problems, obviously taking much more than I needed for PMR at that time. Bet you did get funny looks dousing with cold water ☺️
A typical so called expert who has never had PMR himself. I've been on pred for nearly ten years and know the difference between withdrawal and flare ups. Taking 5.5 mg at the moment and aching a bit and feeling a bit tired that's the steroid withdrawal. Flareups seize you up a massive difference I've had far to many. They don't understand we know how our bodies feel. I don't to go to see Rheumy's anymore I found mine a complete waste of time. Since my last flare which was the worse one ever including my hands swelling up. I've reduced very very slowly this time 0.5 mg every 2 months or so . I have not had any aches in shoulders neck and hips as I've reduced, this is the first time that has happened in my 9+ years journey maybe I'm going to make it clear this time. One can only hope. Cheers Paul
Thank you for this. I am slightly relieved that I don't have to see him again for 6 months, though if I have to 'see' my GP that's not easy! I've never actually met her! I hope you succeed in your attempts to come off pred at last.
For many of us, that will definitely happen but for some it may not.
One thing I know we would all advise you to do though, is find out everything you possibly can about your condition and equip yourself with 'facts' and not 'fiction'. Question everything and anything that troubles you and don't be afraid to push your medical professional until you have a response that satisfies you. Medical Professionals are of course very knowledgeable people, but as so many of us have discovered, they do sometimes make mistakes, suffer oversights and inadvertently miss important clues, so it's really important that we're in a position to ask those pertinent questions when necessary.
It's our body, our pain & discomfort, our life......and ultimately, our choice what we do.
We have to make important decisions all the time with PMR/GCA and the best way to do that is to make them in an environment where we can work together with the medical teams concerned.
Thank you Kendrew. Trouble with me is lately my memory is shot. Is this a side effect of pred? So I forget to ask him half the questions I intend to. I know what you'll say, write them down. Well I do when I can remember to do it! Even if it is written down, I still forget to look at the paper!! Also I've found that unless I ask him a direct question he doesn't comment, for example if I say I get cramp in my feet, he just nods.
As you quite rightly suggested, write the things down you wish to discuss with him as bullet points and have the list in your hand when you go into the consultation. It can feel a bit uncomfortable to pull out a list of questions when the GP/specialist is mid flow but I always say, " I've written some important things down that I want to discuss with you and I'd just like to check my list to make sure we've covered everything."With regards to telling him about your worries..... rather than just saying "I get cramp in my feet"... don't give him an open-ended question....give him one he has to respond to. Eg, "I often get cramp in my feet..can you explain why that might be?"
I will always have total respect for any medical professional who may not fully understand my condition but will at least listen to what I have to say and work with me to resolve issues as they occur. For some practitioners who just simply 'follow the guidance' without giving due care and attention to the individual's needs, it will rarely be a successful outcome......after all, it's easy enough to prescribe lots of medication, or discontinue it, particularly if you're not the person who has to live with the consequences of those decisions.
Well done with your tapering. I hope you have continued success.
My Rheumatologist calls me a sensible lass who does understand what’s happening - if l’m off course l ring the Rheumy Nurses but during the height of the Pandemic & Lockdown l wrote to my Consultant & he rang me back & followed up with a copy letter…….
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