Follow up. . So Doctor rang Didn't tell him gone to 25mg instead of the 22.5 he alllwed because his first words were banging on about how are you on this high dose etc. He said will do me a tapering programme and steroid card to pick up in reception Won't give me more tablets till thirteenth I have enough though so that's ok. Told him want some 1's two's (mg) etc. He said I'm ok for now with 5's as he seems to think should come down 2.5 every three weeks. I think that's too fast. Should do dead slow? And I'm not out of pain on 25!!
There's no way he'll let me go to 25 officially though. Are rheumatologists better equipped to understand and up it. My referral is going through so hopefully won't be too long
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Buttonshutton
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They follow the guidelines, because they are the guidelines, but what they don’t read is this -
However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.
Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.
Some benefit from a more gradual steroid taper.
Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.
And if you are still in pain, you shouldn’t be reducing no matter what GP wants….
2.5mg per every 3 weeks is quite quick, but IF PMR controlled (which yours isn’t) it may be achievable down to 15mg, but, and it’s a big but, not for everyone.
DSNS may make it easier, but if 2.5mg is too big a taper, it’s too big, no matter what method you use.
Rheumies should be better to deal with PMR, but that seem questionable sometimes according to stories in here.. let’s hope yours is one of the good ones.
They follow the guidelines when it suits them - otherwise they may be heard to say that "guidelines are just that, ONLY guidelines"
Anyway - if you aren't at least 70% better in terms of pain on 25mg, you need to see a rheumy pronto to be sure this isn't "just" PMR. It could well be GCA or LVV that has been caused by the vaccine - or nothing like any of them
Some do follow guidelines, forgetting we are all different....I spoke to a lady this morning, in conversation it came out that her 80 year old mother has had PM R for 5 years and in lots of pain at 1 mg....I asked at what dose is she out of pain....5mg, but the doctor won't let her go back up!!....well my hair stood on end when she said this...it makes me so angry...I told her about this forum because she said we just don't know what to do and directed her to the questions list.......she was told to lower one mg a month, and that's where it all went wrong....,so hopefully there will be a new member soon....
Crazy isn't it. Why would they want anyone in pain and then presumably the poor lady will get worse as the inflammation builds up so then back to square one. The key has to be only taper when not in pain. Crackers
It's her GP that's telling her this...hasn't Seen a Rheumi e for 2 years.....I would imagine they are only prescribing 1 mg tablets...yes crazy, and cruel!....
Being devil’s advocate, from your doctors point of view 25mg is quite a high dose for PMR and I suppose it is sensible that they look at the guidelines. Some doctors are more flexible than others depending on their knowledge and experience of PMR. It may be worth you seeing a rheumatologist as a second opinion as to whether you have PMR or something else.
Hi. Yes I know what you mean. I am currently awaiting my rheumatologist appointment. I'm going on what I've seen on here too etc where people have had higher. I still say the guidelines should be different to take into account if people are working etc
I think so but obviously that's just my opinion, well not just mine. Others have said similar. It's all rest take it easy etc etc let the pred do its job. Sometimes it's impossible. Not just when working I don't mean to sound like when folk aren't working it means they do nothing. In fact lots of people are busier than before they stopped work. I totally get that. Just thought maybe there's a school of thought that's why some people working don't get out of pain with stress feeding this thing and work being stressful. Also. With the guidelines stating I shouldn't have it (my doctor also thinks I shouldn't) as am only 50 and stating the average age is 70. Well then are the guidelines stating this along with the recommended dosage they also state being around a recommended 15mg starting point geared around the assumption people aren't working and therefore able to rest when need to and that's why they work and that's why surprise is expressed when they don't work as well along with you are too young and all that. I hope that makes sense. I know what I'm trying to say but not sure I'm making sense !
I agree that stress can affect us, but that is true of everyone, if you are working, looking after a sick spouse, parent or child and many other things. I work, but I am in the lucky position of being a director so can get away with possibly more, if I have a bad day. Luckily it is an office job and I can work from home.
The average age to get PMR may be 70, but that is an average, so the curve stretches out from under 50 to over 100. You could argue that if you are younger you can put up with PMR more easily than if you are older with other aches and pains.
"With the guidelines stating I shouldn't have it (my doctor also thinks I shouldn't) as am only 50 and stating the average age is 70"
In order to have an average age of 70 with there being a very high proportion of over 75s having PMR - there have to be a lot of younger people ... The guidelines do say "over 50" for a diagnosis of PMR to be considered and that doesn't mean that it is impossible under 50 - just less common.
It all depends on the type of work - I worked with PMR both with no pred and with pred. It was a lot easier on 15mg pred - but I also worked freelance as a translator, All I had to do was sit in front of my computer. The difficulty was standing up again!
Like I say just my opinion and also from reading a lot about it on here and various other places seems to be the younger end struggling. I did acknowledge people are stressed and busy whether working or not. I happen to be working as well as looking after elderly parents who are not well and day to day stuff we all have. Nothing more or less than others do. But I just wonder if the guidelines are fitted around the assumption people can rest with the general doctor mantra appearing to be you are too young ... it's a disease of the elderly because the guidelines say so and those guidelines also say take such and such a dose etc. It sounded logical. But what do I know.
Astonishing that someone who has been to university for 5 years doesn't understand what an average is! 😂I get the impression from reading the posts on this site that a lot of us are well under 70!
Unless they do research and get beaten around the ears by their statistician, they usually haven't a clue!! Most of them slept through the statistics lectures at med school!
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