I was diagnosed with PMR finally in Oct 23 after ending up in hospital unable to move. Doctors have been very dismissive and I have seen rheumatologist once and been signed off. I started on Prednisone at 12.5mg then reduced to 10 mg and have been told to reduce by 1mg per month. Is this a realistic target?I did manage to get it down to 7mg but ended up having a massive flare up so have had to up it to 8/9 mg again. I feel like I’ve been set up to fail and am getting no support.
My other problem is I am due to have a knee replacement but have been told I can’t have this done unless I’m down to under 3mg. It all just seems a bit disheartening
I’m so glad I found this form. It’s my first post and appreciate any advice
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Beans-and-Buns
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Morning, your initial experience sounds very similar to mine, with the big difference being that I had a very good GP and surgery. Your starting dose was fairly low, the recommended being in the range of 15mg - 25mg. Ideally staying on that dose until the inflammation is brought under control. Then you can start a slow taper down until you find the level that keeps things under control.
Thank you so much for your advice. I’ve had some amazing replies and have learned more today than anything I gleaned from the rheumatologist. I do think I’ve been trying to reduce too quickly and it’s made me realise it’s just got to be done at my own pace. Also had no idea that it’s likely I could be on Pred for many years. Once again thanks x
I am sure the experts will be along soon of this forum, I have learnt so much from them. I self-manage my dosing and my GP is very happy with that.
PMR is best managed according to symptoms.
Taper very slowly...much slower than you have and if you have pain returning then go back to the dose that worked...if you have a flare then you will need extra (dose plus 5mg for a week or two),
Your taper is very fast...and why won't they operate on your knee when you are on more than 3mg?...please challenge them.
And remember life can become very difficult when you reach lower doses because it takes time for the adrenals to switch back on after having gone to sleep when you take higher doses of pred.
Hope you get that knee surgery...lots of people on here have had it and it seems to be very successful. Good luck.
12.5mg is the lowest start dose for PMR.. so maybe your illnesses wasn’t really given the chance to be properly controlled, which is probably why you flared. Bcol has kindly linked the advice for getting thing back under control. Not sure if you’ve got that back under control and what dose you are on now… but think it should be 9mg at least.
The guidelines actually say once below 10, a 1mg taper every 4-8weeks - depending on diseases activity and patients wishes. So I’d be sticking to the 8 weeks suggestion for future. Whether you do that as 1mg every second month, or 0.5mg every month is your choice… and maybe one of the slower tapers as suggested. See here for couple of options -
As for knee replacement- any chance of negotiating it being at a slightly higher dose, many on here have had it done a successfully at around 5mg or just above.
I agree with the replies that you've had; starting dose possibly too low; tapering too quickly and reduction in dose each time too great. Yes, you possibly have been 'set up to fail'.
I used a 4 week tapering plan and then stayed on the new dose for another week or two before starting to taper again. And each time I tapered it was always less than a 10% reduction in dose.
My belief is that the body is very susceptible to even tiny changes of steroid, especially when the adrenals have stopped producing it because you are taking 'massive' amounts orally. 'Slowly, slowly,vcatchee, monkey' as my dad used to say!
You are never reducing relelntlessly to zero pred - you are TITRATING the dose to find the lowest effective dose. That is the lowest dose that gives the same symptom relief as the starting dose did. Unfortunately it sounds as if your doctor doesn't appreciate that. And PMR does NOT disappear in a year - if only it did, it is a chronic condition, fewer than 1 in 5 are off pred in a year and it has been known for years that as many as 40% still require pred at 5 years.
As already said, 12.5mg is the lowest in the range of starting doses suggested in the 2015 Recommendations. If it works, all well and good, but it often doesn't allow a really good clear out of accumulated inflammation. When you start that low, doctors also tend to forget that you have already "done" a lot of the taper process and try to push you further.
I would say you now need to start again - purely because the flare protocol says add 5mg to where you flared, and that will be 12.5mg. Then stop at 10mg for a reasonable time - at least a month - before starting to taper at not more than 1mg at a time but preferably 1/2mg. It sounds as if you may get to 8mg OK but be VERY wary because the inflammation can start to build up in advance - it doesn't happen all of a sudden.
Do you have a choice of GPs in the practice? It may be worth "interviewing" others as I had one who was useless over PMR but there were at least 2 others in the practice who would have "got it" straight away and saved me 5 years of pain and disability!
As for the knee, it tends to depend on the surgeon what dose at which they will operate. It does increase the risk of infection and infection in joint replacement surgery is greatly feared for good reason. Unfortunately the PMR will complicate things even further - if it isn't well under control there is no way you will manage the rehab that is absolutely crucial to the success of the replacement. It might be worth seeking other opinions if you can. One lady some years ago was told she couldn't have her hip replacement done while on pred but she wrote to a selection of orthopaedic surgeons and found one who was happy to operate at 10mg and it was successful with no problems - and the PMR improved too, it was as if the hips pain was feeding the PMR.
Have you spoken to the knee surgeon about the amount of prednisone you should be on? One year ago I had major back surgery and they did not make me reduce in fact they gave me a shot of prednisone before surgery so I would not have a bout of adrenal failure.
Every surgery I ve had the doctor ordered it and I did fine. I would find a new GP if I were you. You are just at the beginning of your journey with PMR.
Hi I only recently saw the knee surgeon and he knew nothing about PMR but it was a complete no no when I told him about the steroids. I’m due to see him again in June so will be nowhere near 3mg by then but I do now feel after peoples advice that I should challenge this. Honestly feel like I’ve been hitting a brick wall so am really grateful for all the support x
Hello, I had extensive Spinal Canal surgery two weeks ago whilst on 10mgs Prednisolone with no problems. Good luck,I hope all goes well for you. Best regards. I was on 20mgs post surgery for two days.x
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