I have been diagnosed Nov 2018 and started with 15 mg pred with immediate pressure to taper down asap. Was assumed by GP it would be sorted in a year and i would be running again. Got to the 10mg and pains returning. Went back up a bit and tapered a bit more gradual but the pain increased and increased and I asked to be referred. I was at 5mg and had the mobility of an 80+. Rheumatologist put me back to 15 and said I was very young and diagnosed it might be PMR and said it could lead to RA as it is the family. This has spooked me and created a fear I may get this. Started tapering more gradual still but at 10 mg pains were returning. Had x-rays and they indicated bone thinning at shoulders, something around knee cap. Rheumatologist was very rushed and didn't get much sense out of him. Am now at 7mg and every other day on 6mg aiming to go to 6mg daily and to taper further. The pains I have now are in the shoulders, around the knee, hip and in lower back. Different from when it started. I don't sleep well, I am very tired and have palpitations, sweats, dry mouth, tinnitus and really want to be done with this. I don't know what is normal and what to expect. It certainly doesn't seem to be a quick fix as GP promised. I am not walking well. I have a desk job and need to move after an hour as my knees and legs are so stiff. Does this seem like "normal"?
New here & introducing myself : I have been... - PMRGCAuk
New here & introducing myself
Welcome to the club no-one really wants membership of! How old are you?
"... really want to be done with this ... It certainly doesn't seem to be a quick fix as GP promised"
Everyone does want to be done with this - but I fear your GP is ignorant of the real nature of PMR if that is what you have, Only 1 in 5 patients with PMR are off pred in under a year, it rises to 1 in 3 by 2 years and half by 6 years. Half of us need pred for much longer.
It is a quick fix in that once you are on pred you can be free of pain and symptoms, though some don't achieve perfection. Better than 70% improvement is expected though. Then you taper the pred to find the lowest dose that manages the symptoms as well as the starting dose did to give you a better quality if life until it burns out and goes into remission, But it takes a long time. It isn't a case of taking pred for a few weeks and stopping.
The positive is that it does go into remission eventually for most patients - and it isn't life-threatening.
Hi, I am now 55. Seems I've been given false hope at the time. Initially it worked like a treat. I had a blood test today and see what the results are and will discuss with new GP. Hopefully have appointment early July with different rheumatologist.
The guidelines in general are "over 50" and NICE now say "over 40"
It does work at treat - when it is used properly.
By the way - you are showing a lot of signs of now being at too low a dose for the inflammation. The tinnitus worries me as it can be a sign it is more than "just" PMR, as can the sweats. It will be interesting to see the blood test results.
An x-ray can't show bone thinning - wonder what they meant by that. Or do you mean you had a dexascan?
I don't know what I had exactly, I got told x-ray and that haven't it seemed. I don't know what a dexa scan is. Anyway, hope to get blood results soon and than discuss with GP. Will check on the dose of pred. Next step will be to see new rheumatologist as i am not happy with existing one. Appointment is lined up, so fingers crossed. Having see the many replies, it has given me a number of questions to ask.
You poor thing. You have had a spectacularly unhelpful/ignorant doctor, and seems like you have spent most of your time on pred at too low a dose especially when you get down to below 10mg. Have you got enough supplies to go up to say 12mg, maybe even 15mg for a week or so and then very slowly following one of the slow tapers recommended on here. If you go up to 15mg you may be able to drop back to 12.5 mg, but from there to 10mg seems in the past to have been too big a jump. Dropping by 0.5mg once you get to 10mg again. If the pains start coming back you stop the taper and try again a month or so later. You should never be in more pain/discomfort than you were at the beginning on 15mg, when I believe you felt good.
If your doctor is not happy with this you may need to find someone else. Could you Go private for one appointment? Sound like your rheumatologist thinks you are atypical, When he is rushing you down the doses too fast for you at this stage of YOUR disease.
The best of luck....
Thanks. Had blood test today and will discuss results and dosage with new GP.
It may be worth arming yourself with information on best practice in PMR. I’m sorry I do not have the info saved here, but somebody ma6 come forward. I hope the new GP knows what he /she is doing....
Remember also that if the blood tests are normal that is the case in 20% of people. Were your levels raised at the beginning?
With luck, on the right of the page that you are looking at now, there's a heading for PINNED POSTS and in the list is 'Tapering Plans'. If you take a look on there you will find a couple of plans which many members of this forum have used successfully.
I was diagnosed at about the same time as you - started at 20mg per day, after a month, first taper were quite chunky then from 12.5 I slowed down and started to follow one of the slow taper 'programmes' suggested on here and am now down to 6.5mg - going in .5 steps.
From what I have read on here, many GPs and rheumatologists do not understand that these conditions and patients bodies do not recognise the printed calendar. Nor do they know that extra stress - whether physical or mental - that may occur because of events beyond your control, may mean you need to slow down your taper or even go back a step or two to get the system back in balance again.
Welcome to the club. Glad you've found it, sorry it took so long.
From personal experience, please don't allow yourself to be pressured or pressurise yourself. The stress of trying to get lower too quickly is very likely to come back and bite you. PMR loves stress!! Unfortunately many of us have found that everytime we flare and have to increase our dose, it not only becomes more difficult to reduce again but also the PMR seems to take on a slightly different character. As you read through all the posts on this site you will learn that everyone's PMR is different. You will learn through trial and error what works for you.
Some suggestions which may help: Keep a daily record of dose taken, how you felt on waking and how you felt in the evening. If you do anything strenuous and that could be housework (!) note it down. Read as much as you can about PMR. Dr Google will help.
You are now into Adrenal Insufficiency (AI) territory. That means your Pred dose is below the level at which your body needs to function. In an ideal world your body would make up the shortfall but your adrenal cortex has been suppressed since Nov2018 and so cannot do this efficiently at the moment. Many of the symptoms you describe could be because of this. If this is the case you could try some standard pain killers as they will work for AI pains but won't work for PMR pains (different mechanism). Keep a watchful eye on the tinnitus if this is a new symptom, especially if you develop a headache which doesn't respond to Paracetamol or Ibuprofen. PMR has a big brother called Giant Cell Arteritis and tinnitus can be a warning sign.
Are you taking Vitamin K2 MK7 capsules? Are you taking a Calcium and VitaminD supplement? If you search this site there are many posts about bone thinning due to Pred and the need to take these necessary supplements.
Ask us as often as you need to and welcome.
When I got diagnosed I did Google the condition and pretty much everywhere it states it should be over in 1 to 2 years, occasionally up to 5 years. So you do fall in the trap of tapering as much and as quick as possible. I do take calcium and vitamin D supplement. Just need the blood results as they may give an explanation of the tinnitus, palpitations, tiredness and aches and pains. I will take it from there and formulate a plan. Your reply certainly gives me food for thought
Here’s a bit more info on the way ahead -healthunlocked.com/pmrgcauk...
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