I wondered if you lovely people can help me ? - PMRGCAuk

PMRGCAuk

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I wondered if you lovely people can help me ?

Sandidee profile image
29 Replies

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

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Sandidee profile image
Sandidee
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29 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk 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 profile image
Sandidee in reply toDorsetLady

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 profile image
DorsetLadyPMRGCAuk volunteer in reply toSandidee

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

Sandidee profile image
Sandidee in reply toDorsetLady

Thank you

123-go profile image
123-go

Painful arms were my first symptom. ☹️

Sandidee profile image
Sandidee in reply to123-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 profile image
123-go in reply toSandidee

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 profile image
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 profile image
Sandidee in reply toSeacat30

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 profile image
DorsetLadyPMRGCAuk volunteer in reply toSandidee

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 profile image
Sandidee in reply toDorsetLady

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

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSandidee

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 profile image
Sandidee in reply toDorsetLady

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

PMRpro profile image
PMRproAmbassador in reply toSandidee

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 profile image
Sandidee in reply toPMRpro

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 profile image
PMRproAmbassador

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 profile image
Sandidee in reply toPMRpro

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 profile image
PMRproAmbassador in reply toSandidee

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

Sandidee profile image
Sandidee in reply toPMRpro

Thank you

Bcol profile image
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 profile image
Sandidee in reply toBcol

Thank you

piglette profile image
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 profile image
Sandidee in reply topiglette

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 profile image
PMRproAmbassador in reply toSandidee

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 profile image
Sandidee in reply toPMRpro

Thank you so much for reassuring me 😊

piglette profile image
piglette in reply toSandidee

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 profile image
Sandidee in reply topiglette

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 profile image
piglette in reply toSandidee

Good luck.

Sandidee profile image
Sandidee in reply topiglette

Thank you

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