should I still ache
Posted , 9 users are following.
I was diagnosed with pmr in January this year, and started off with 15mg of pred. My crp and esr levels are now down to 2, and I have reduced my pred down to 12 1 mg at a time, and staying on the dose for three weeks but my upper arms are still quite painful. is this normal? My doctor has been very good and is quite happy for me to reduce at my own pace, but believes the blood results are the most important factor, but I have been reading this forum for some time! When you mention relapses do you mean going back to when you couldnt turn over in bed etc. Do you reach a stage when there is no pain at all.
0 likes, 11 replies
EileenH
Posted
Your doctor may think the blood values are the most important thing but I'm afraid other doctors, including a lot of top rheumatologists, don't agree with him! The only absolute about how you are is just that: how you are. The ESR and CRP can be normal and you be in a lot of pain - I've never had a raised ESR at any point in the last 7 years despite typical PMR symptoms at various levels including the not being able to get out of bed - never mind the turning over bit! I'd got to the stage I thought it was normal to have to turn over bit by bit!
Did the arm pain go away at the beginning when you were on 15mg? How long were you on 15mg? If you were diagnosed in Jan and are already on 12 it can't have been long. However - it is in line with the British Rheumatologists recommendations. I had upper arm pain (couldn't hold a phone to my ear without cramp!) and also pain deep in my hip joints which was bursitis. I can't remember how long it took for the arm pain to go altogether but it was certainly a few months before the hip pain went totally. It's thought that the bicep pain is probably due to inflammation of the artery supplying the muscles so that when you use them you have what is called claudication pain. Also, raising your arms above shoulder level at certain positions also affects the blood supply leading to the discomfort.
When I first started on steroids it was a 2 weeks each of 15, 10 and 5mg. A great deal of the pain disappeared at 15 and a bit came back at 10 but was livable with. The second time, just a few weeks later (GP led as the rheumatologist disagreed with the dx despite the response of many of the symptoms in less than 24 hours) it was much harder to get the dose down to 10mg and although I did get to under 7mg a day within 7 months I had to increase the dose again last summer and have only just started to reduce from 10mg without problems (so far at least)!
In fairness, however, I think most of us have some pain and stiffness even on steroids - they don't cure this, they make it manageable and the aim is to find the lowest dose at which you can function happily. That is obviously going to depend a great deal on your expectations and demands. If you still have to work you need more relief possibly than someone who is retired and can say on a bad day, I'll just take it easy today. I know there are others on the forum who have been able to reduce to quite low levels and then the pain and stiffness has returned and they have had to up the dose again and start the reduction all over again. And it also varies from day to day - the fatigue is still there for many and that can hit without any warning, you get up and feel tired! Weather does affect rheumatic disease - and there is finally a study which agrees! This winter has been difficult for lots of people and you can notice people now saying that their reduction is going better.
And, of course, if you have had a good period you have probably overdone it in some way - and it doesn't take much to overdo it sometimes! I have noticed a big difference the last 3 weeks since I tore knee ligaments - I have no choice, I have had to do less (not that I do that much anyway :wink: :oops: ) and I do feel less \"PMR-ey\"! Or maybe it is the early summer weather we have had for the last 4 weeks here.
I think, too, we would distinguish between a flare and a relapse and most of us would say what we have where we need to up the dose a bit is a flare whereas a relapse is what happens in someone who has \"gone into remission\", i.e. the disease process has died down and they have been able to get off steroids altogether or have been at a very low dose (1 or 2 mgs) for a longish time and suddenly the symptoms are back in force. In terms of a flare, different docto
MrsO-UK_Surrey
Posted
You mention that your ESR and CRP levels are now down to 2 and I'm wondering what they were at diagnosis? If they were high at first then you may be one of the people, like me, who can rely on those tests as a reliable marker as to how the inflammation is doing. Some people don't have this luxury! :wink:
My pain levels very much always corresponded with my blood tests results, ie if my pain significantly worsened then so did the blood test results, so these were carried out prior to each reduction as a guide.
I started on 40mgs 4+ years ago (I also have GCA) and have been on 1mg for some 9 months. Throughout all the reductions I was never completely pain/stiffness-free until down on a very low dose and without the guidance of ESR and CRP blood test results would probably never have reduced! :roll: :lol:
So in answer to your questions: 1) Yes it is \"normal\" to still experience pain in your upper arm muscles; and 2) yes you will reach a stage when there is \"no pain at all \" but as for when that stage will come varies from person to person - although we are all alike in the fact that we suffer from PMR and/or GCA, we all vary in our response to steroid treatment and our individual journeys with PMR. There are a few very lucky people who have a very smooth journey and become pain-free once the inflammation is under control.
I found a physio late in my treatment who worked wonders on a particularly long-standing, painful right arm muscle and shoulder blade but if you do go down this route it is essential that the physio understands PMR and that the muscles must not be pulled about or stretched in any way, just gently massaged and perhaps with added heat treatment - the latter I found particularly beneficial when my pain was at its worst, either a warm shower, a heat pad or a hot water bottle - not lasting relief but relief nonetheless.
Do hope this helps to answer your questions, Gabriella, and best wishes for a smooth journey to recovery.
MrsO
fiftiesgirl
Posted
Yes, even though my doc has told me I should be completely pain and symptom free if the dose of steroids is correct, I have not actually found that to be so...... as with the others, I have learned to live with a level of discomfort which allows me to have some sort of quality of life although nowhere near my pre-PMR days.....but I just get on with it!
BettyE
Posted
[color=red:c94425754c][quote] even though my doc has told me I should be completely pain and symptom free if the dose of steroids is correct, I have not actually found that to be so[/quote[/color:c94425754c]].
You do have to wonder where some of these doctors get their information, don't you? Have they ever had this illness? Have they ever taken steroids? Probably not. Mostly they won't have had many PMR /GCA patients so it's probably not reasonable to expect an encyclopaedic knowledge. Just a bit less pontificating and a bit more humilty and a willingness to say \"I am not sure\"
It's a shame you have to be here but, as F.G. has said you'll find several really well-informed people. Good luck. Betty
Margherita
Posted
thrives on iy !....)So, it is not gloomy. And then of course, the lovely girls of the Forum, that are always so ready to rush in with advice and conforting words. Take care, and wish you pain free days ahead. Granny Moss :rose:
Dublin,_Ireland
Posted
I have not really got anything to add to what the other ladies have said, and am sorry that you find yourself in \"Our Club\" :cry:.
I was diagnosed this time last year and am currently down to 9mgs.....but to say that I was totally pain free and able to do what I was capable of pre- PMR would be far from the truth :x
. .
Yes, I have days ...and sometimes even weeks, that I feel really well, but then I have others, like at present, when I have no energy whatsoever and just get thoroughly P****d off with this condition :oops: :lol:.
I am lucky, in that I no longer work outside the home, so I can just lounge around doing nothing all day if I so choose :wink: , but unfortunately I am not REALLY a lounging about type of person and get quite frustrated by not being able to do what I want.
The bottom line is that we have to pace ourselves constantly with PMR, otherwise it has a tendancy to \"BITE BACK\" :roll:
I hope that things improve for you soon and do keep checking in to the site...I have found the support here to be invaluable.
Best wishes, Pauline.
Mrs_G
Posted
You have been given so much advice already that its difficult to add anything !!
Is the pain there all the time regardless of what you are doing ??This time last year even if I was putting clothes away on the high rails in my wardrobe my arms would ache but they dont now
The tops of my arms are always the things that will hurt first if I have been overdoing it My muscles will feel really as if they are burning
You are lucky in the fact that you have a Dr who lets you do your own thing I think if your pain is there continuously you are on too low a dose as the idea is to live as normal a life as possible so I would have a chat with your Dr
I still get days when for no reason I am exhausted and I am 2yrs 6 months down the line
Best wishes
Mrs G
Green_Granny
Posted
After a while we all seem to find a way of coping with PMR, some of us reduce more quickly than others - so we are each the expert on our own bodies!
I too am lucky in having a doctor who knows a bit about PMR, he works in the rheumatology dept. at local hospital, but even he says he only diagnoses 2 or3 patients a year. This was when I said I had several neighbours with the condition; he replied that I noticed because it wasn't \"over in a month\".
I am down to 6mg. after 2 years and a bit - I had a flare Jan.2010 - and I have been very slow in reducing compared with many. I ache this morning - but then I did quite a lot of heavy gardening yesterday, and I am 74 (just), and would expect a few aches and pains anyway. :roll: So it's sometimes hard to know what is what!! But I am clearly doing far more and having more energy than a year ago........ :D
All the best, Green Granny
Gabriella
Posted
I too find it hard to nothing, although I am retired there is always something that needs doing, and I perhaps have to thank my dogs for being the reason that I always get out of bed in the mornings
I had forgotten about the side effects of steroid reduction, and obviously actually asking for information has helped, as today I feel a lot less sore.
My crp level was 49 and the esr 57, but I was told by my gp that he has seen a lot higher, and of course I know through you that it doesnt have to be raised at all.
Thank you again
Gabriella
MrsO-UK_Surrey
Posted
That's great news that you are feeling less sore today and hopefully that is a sign that your body is finally adjusting to the lowered dose. Your ESR and CRP markers have dropped considerably from the outset and as long as they remain as low as 2 then that is a good guide for you that your inflammation is being controlled by the current dose. Your GP sounds 'on the ball' - he is right about seeing even higher blood markers.....mine were ESR 92 and CRP 157! They were always monitored before making each reduction - if they had increased I didn't make the drop until they normalised.
I'm sure with 2 dogs you are getting all the exercise you need for the time being!
Very best wishes,
MrsO
sparklin
Posted
I have good and not so good days. I'm on 10 mg and will stay on that for a while my ESR is 16 and it had now changed from the month before