New to Polymyalgia
Posted , 14 users are following.
I was diagnosed with polymyalgia yesterday and im now on a lot of steriods.just wanted to know what im in for really. im in the rare group as im 36
0 likes, 40 replies
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Notes on New to Polymyalgia
lynda62707 claire08318
Posted
hi claire, welcome(??) to a very informative forum with alot of compassionate folks on it.
yes indeedy, you are in a rare, (but not impossible) age group.
how many mgs of prednisone are you taking?
for how long?
I can only tell you my own experience, but eventually, you'll hear many more.
we're all different and so have been our journeys.
if you can let me know a bit more info about what's goin on, I'll be glad to share with you whatever I can.
just know we're all here for each other!
TonChe claire08318
Posted
Hi Claire,
Firstly, the steroids should make you feel a lot better quite quickly, if not already.
Second, the condition is likely to last a long time - likely several years, and you will be taking steroids for that long, and they can have side effects, but don't believe all the horror stories - they can be managed (especially for you as you are so young) and are much better than uncontrolled PMR inflammation. I've been lucky in that i've not suffered any side effects and am a low dose of 5mg now.
You will be upset now - i certainly was & big time and was grieving 'for my lost health', but remember PMR does not kill you, WILL go away eventually, and (for me), is only an annoying ailment as i'm stiff when i get up (I've had it 6 months now). The severity of PMR and side effects of steroids/levels needed for control do vary from person to person so your experience may be different to mine. Don't listen to people telling you what you can't and can do - only you know that.
Lastly, remember Prednisolone does not cure PMR, only reduces inflammation and stiffness.
sandy08116 TonChe
Posted
Good advice, TonChe
I had GCA, now over, I have PMR. As you say, it's manageable and it took just weeks to reduce to a sustainable dose of 5mg pred daily. Most of the trigger points are painless now - except one (upper arm). But even that is only annoying, rather than debilitating.
Hi Claire - join the club. Excellent advice here.
Cheers from New Zealand
claire08318 sandy08116
Posted
thank you sandy, good to know it can be managed well.
Anhaga sandy08116
Posted
Trigger points? I have PMR, at least so I've been told. And I never heard of trigger points in PMR.
ptolemy sandy08116
Posted
I am not sure PMR has trigger points. It could be myofascial pain syndrome which does. Also fybromyalgia has trigger points.
sandy08116 Anhaga
Posted
Sorry for misleading with 'trigger' points. I did not have the required 11 to 18 points as for MPS (thanks Eileen, read your reply in another thread of two years ago). Doc said it was PMR, so I am a bit clueless on the definitions.) At the start, muscles affected were in lower legs, hips, shoulders and upper arms. All went after taking prednisone - and now, just a twinge remains in left upper arm.
sandy08116 ptolemy
Posted
Ooops - my mistake.
EileenH sandy08116
Posted
No - the minimum 11 out of 18 trigger points were required for a FIBROmyalgia diagnosis (according to the literature, I have my doubts about that ...). MPS can have fewer trigger points - and they can be in different places but are quite specific.
Myofascial pain syndrome is something of a newcomer to mainstream medicine, although it has been acknowledged in most of mainland Europe for many years and by complementary medicine all over the world. Work done a few years ago found that the hard knots of muscle fibres that could be felt in large muscle groups were concentrations of the same inflammatory substances they were finding systemically in cases of PMR (throughout the body) - and that patients with PMR were more likely to develop MPS although you didn't have to have PMR to have MPS.
BettyE claire08318
Posted
Good that you are here. Keep coming back with all your questions as they occur. Between us we have a lot of experience and are always willing to share and also to refer you to other sources of information. In turn you will sometimes be able to help others.
I hope your Pred. is already controlling your symptoms. I was one of the lucky ones who got more or less instant relief ( 4 hours ).
Best wishes.
claire08318 BettyE
Posted
it feels like its starting to control it which is great tbh. i feel like i can walk my dogs again, although ive nearly fell over them twice lol
sandy08116 claire08318
Posted
Faster than the dogs? That's progress! My idiot cat Mario follows me everywhere, then, as we are about to ascend steps to the front door, he leaps to the step above and does a rollover! And there's me carrying bags of supermarket stuff with a decision to make: is he living dangerously or wants to see me fall flat on my face?
claire08318 sandy08116
Posted
awww hes gorgeous. im just glad my dogs are small breeds. i think hes living dangerously lol x
BettyE claire08318
Posted
I had Great Danes; they never tripped me up and if I stumbled I could steady myself by leaning on them.
claire08318
Posted
thank you all. i havent felt a lot of relief yet but my doctor said to expect the prendisolone to kick in within three days. i do feel like im grieving as im a single mum of two children and i left a domestic abuse marriage four years ago with a three and five year old who is now nine and ive recently found out he has autism.and adhd so things were already rough and now with the stiffness and pain i feel a little useless. im on 6 steriods this week, then five each day for a week, then four a day for week, then three a day for week and then two a day which i think will hopefully be my normal dose. im on 5mg per prendisolone at the moment. i have lansaprazole 15mg once a day too and my doctor has reffered me to see a rheumatologist. so glad i found this forum you all seem lovely and its great to chat to people that understand. thank you x
Anhaga claire08318
Posted
So you are starting with 30 mg per day? You must not lower your dose until your symptoms are much better. If you do not feel significant relief by the end of a week you should return to your doctor and make sure the diagnosis is correct. I suggest that you may be okay with the first drop, maybe even the second, but after that you shouldn't taper in such large steps. Also I'm alarmed that you are expected to drop so much once a week. My experience was to start at 15 mg, stayed there for about five weeks, then dropped by 1 mg per week to 9, where pain began to return, went back to 10 for a couple or three weeks and then started the "Dead Slow Nearly Stop" taper plan. I was down to 3 mg by the end of the first year.
There is not really any "normal" dose for PMR. Each of us has to find the lowest dose which manages the disease. In my case it turned out to be around 2-2.5 for a couple of years, we are all different. But you will only find that lowest possible dose if your initial taper is slow and careful enough. Others will be along to add to those comments and fill in the blanks.
Incidentally, have you been assessed for what they call "differential diagnosis" of polymyalgia. This is when you are tested to make sure there is nothing specific causing your symptoms, possibly a condition which can be more effectively treated another way? I think this is particularly important as you are significantly younger than the usual age at which PMR strikes. You can look up polymyalgia rheumatica differential diagnosis on the internet.
EileenH claire08318
Posted
Sorry - I asked the questions before seeing this post. You are obviously in the UK then
I don't want to sound defeatist, but that approach to tapering is not in line with anything recommended in the medical literature or on the forums. A more usual starting dose would be 20mg - not 30 (I'm assuming that your tablets are 5mg each?). Fewer than 1 in 10 patients respond to the starting dose that quickly - that said, I did, I could move just 6 hours after taking the first 15mg dose! Then you would stay at that starting dose for a month, reduce by a small amount and stay there for a month and so on. You will at least have been at above 15mg for a month which is something. But if you don't get the result in 3 days, don't let the doctor say that means it isn't PMR, half of patients need a month to really get a significant improvement. And I think he is being a bit optimistic to think you will get to 10mg without problems in a month - as I said in the other reply, the steps are big and no-one can know what dose you will need in the first year which is when the illness is still quite active.
But we'll see - I think it is very unlikely a rheumatologist will accept a diagnosis of PMR in a 36 year old without some dispute and a lot more testing. I wish you luck.
Anhaga claire08318
Posted
You may not need the lanzaprazole (a PPI). Most of us have found taking our pred with food, sometimes even a small helping of yoghurt, is enough stomach protection. To be even more careful don't lie down after taking your pred. Unfortunately PPIs contribute to bone thinning so should never be taken for a long period of time.