I wondered if you lovely people can help me ?

[Sandidee]

Hi there I am not sure if I have a flare or not. I am at present tapering from 2 /12 to 2mg of pred. Quite awhile ago my arm started to hurt it started in my elbow and gradually my whole arm hurt but not all the time I thought that I had pulled a muscle but then on Monday the same thing started to happen to my other arm I was just wondering if any one else had painful arms with PMR. In the past I always had PMR in my legs and neck. As I have osteoporosis I don’t really want to go up with my pred I would if I had to though. Thank you so much for reading this

[DorsetLady PMRGCAuk volunteer]

As it’s now both arms quite likely a PMR flare, and yes shoulders/arms are affected…. See picture - So think you should treat as a flare - see this link for general info on how to deal with it, if it is -

healthunlocked.com/pmrgcauk...

PMRGCA

[Sandidee in reply to DorsetLady]

Thank you for your reply. Yes I think that it is a flare as my neck has started hurting as well it was quite painful this morning when I woke up. My shoulders aren’t affected just my arms.

[DorsetLady PMRGCAuk volunteer in reply to Sandidee]

Okay -well you can try increase and see what happens -hope it works…

[Sandidee in reply to DorsetLady]

Thank you

[123-go]

Painful arms were my first symptom. ☹️

[Sandidee in reply to 123-go]

Thank you for replying to me. Was it your shoulder’s as well ? As I have no pain in my shoulder’s only in my arms but I have my neck hurting as well now so I have upped my Pred

[123-go in reply to Sandidee]

Yes. Started with upper arms then shoulders, back, hands, buttocks (felt as though I was sitting on jagged rocks), thighs, knees, feet. I can't remember if I had neck pain but that is one of the symptoms mentioned in this:

nhs.uk/conditions/polymyalg...

I hope the increase in Pred helps. Don't forget to rest when you need to and don't push through pain.

[Seacat30]

Yes it came on after I had been taking pred for about 3 months. I associate it with that stage not the original PMR. (I was still on quite high steroids then.) I also have shoulder tendonitis now but I don't know when that started or whether that is the cause.

[Sandidee in reply to Seacat30]

Thank you for replying. I started with pmr In August 2017 and this is the first time that my arms have been affected it is always my neck and legs. I don’t think that I will ever win this battle and get off Pred

[DorsetLady PMRGCAuk volunteer in reply to Sandidee]

You will -but even if you don’t get off Pred completely but on a very low dose that gives you good quality of life .that’s okay. Lots of us are on low doses of all sorts of meds -but have a good QOL -anything’s better than being in constant pain is good in my book.

[Sandidee in reply to DorsetLady]

Yes I agree but my hospital consultant told me that because of my osteoporosis she wants me off pred. 😢

[DorsetLady PMRGCAuk volunteer in reply to Sandidee]

Sounds about right but not always as easy as that -some doctors need to learn that not everything is as black and white as a text book!

[Sandidee in reply to DorsetLady]

My GP was as bad that’s why he passed me on to the hospital.

[PMRpro Ambassador in reply to Sandidee]

Sure she does - but there are other ways of dealing with the osteoporosis if it is really bad. If you stop the pred before the underlying cause of the inflammation that causes PMR, then all that will happen is the inflammation will build up and you will end up back where you were. That means you will be less mobile, less able to exercise and have difficulty moving so at increased risk of falling. Immobility is a risk factor for OP - and falling is a major risk factor for fractures which you want to avoid.

It isn't as simple as they think.

[Sandidee in reply to PMRpro]

I am on daily injections for my osteoporosis and luckily I don’t go back to the hospital until September so hopefully I can be on a relatively lowish dose by then. I think that I was alright on 3 mg so I will stay on that dose for a month or so before trying to go lower and then go down by 1/2 mg.well I always go down 1/2 mg at a time. Thank you for all your help

[PMRpro Ambassador]

Yes - that sounds very much as if you are now at slightly too low a dose to manage the inflammation. Upper arms are often part of PMR pain.

I do appreciate the osteoporosis aspect - however, if you DON'T go back to the dose you need, the leftover inflammation each day will just build up until you are as bad as you were originally in the worst case scenario - and then the option is disabling pain which is as much a risk for OP as anything else because of lack of mobility and also increases the risk of falling or you return to a much higher dose of pred. Exactly the opposite if what you are aiming for,

[Sandidee in reply to PMRpro]

Thank you for your reply. My neck was hurting as well this morning so I have upped my tablets, in the past if I had a flair I would up the dose to 10 mg for a few days and then back down but do you think that I need to go that high ? I took 5mg this morning not sure if that is enough though.

[PMRpro Ambassador in reply to Sandidee]

Try it and see - when you catch it quickly you often get away with less.

[Sandidee in reply to PMRpro]

Thank you

[Bcol]

Hi Dandidee, think the other posts have said all the important stuff, but it most certainly affected my arms, when I started this journey. Arms, shoulders, neck, hips, thighs plus one or two more thrown in for good measure.

[Sandidee in reply to Bcol]

Thank you

[piglette]

Why don’t you just up the steroid dose by 5mg for a week just to hit the PMR on the head and then you can drop back to say 3mg, see if everything is OK and continue from there?

[Sandidee in reply to piglette]

Hi Piglet. Thank you for your reply .Yes I have increased my dose this morning to 5 mg not sure though if I should increase to 10 mg. I so want to get off the Pred

[PMRpro Ambassador in reply to Sandidee]

You will get back to where you were OK - but you won't get off the pred until the PMR has gone away and it obviously hasn't yet. But you are at a really low dose - don't push your luck.

[Sandidee in reply to PMRpro]

Thank you so much for reassuring me 😊

[piglette in reply to Sandidee]

You may have been better just adding 5mg to your current dose for the week to really hit the PMR on the head. Hopefully 5mg will be enough.

[Sandidee in reply to piglette]

Yes i think that I am going to go up to 8mg for a week and then down to 3 as I am worried that 5 mg might not be enough. I want to hit it on the head !

[piglette in reply to Sandidee]

Good luck.

[Sandidee in reply to piglette]

Thank you