PMR sufferer wanting help : I have PMR and I am on... - PMRGCAuk

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PMR sufferer wanting help

Vejay
Vejay

I have PMR and I am on Steroids I have come down to 3g a day.since I have been on them I have become a different person one of whom I don’t like there are days I don’t have any pain then I get days that the pain comes back I mainly suffer in my upper arm muscles

Can anyone help me as to how I can deal with this my GP just suggest to take pain killers I have tried this and they just make me feel so tired weary I really hate feeling this way I am 78 and have been very active and fit all my life I consider myself as quite young looking for my years

HELP ME PLEASE if you can thank you 🙏

20 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Vejay,

It sounds like you have gone below the level of Pred you actually need to control the inflammation caused by your PMR, but a bit more info would help.

When diagnosed? What symptoms before diagnosis? What starting level? How long it’s taken you to get from that dose to 3mg?

How you are now very often depends on what’s gone before.

Painkillers will do nothing for PMR, so you might find you need to increase you dose. Could try 5mg for a few days and see if that helps, but as I say a bit more background might help.

Vejay
Vejay
in reply to DorsetLady

Hi there thank you for your interest and time

I started on 25g reducing every 4weeks I have had a few relapse within the last few months and increased the dose slightly which helps a little however as time goes by I still get reoccurring lapses which aren’t as bad

I would really love to know how long it will be before I can releave my body of this poison

I have been diagnosed with pain in my shoulder joints at first however when I get my pain back it is mainly in my pec muscles

I was first diagnosed 12mth ago and I started with 25g reducing to 15g within two months

The rhreautologst at the PA doesn’t seem very interested I feel it’s a waste

I just don’t know where to go from here

Thank you Vejay

xdbx
xdbx
in reply to Vejay

I completely understand how keen you are to be off the steroids but allowing the underlying inflammation to continue running in the body is more dangerous and likely to cause other problems than the low dose of steroids you're currently on. I think you can definitely afford to increase to 5mg as DL suggests, possibly even higher. Better to be pain free and on a slightly higher dose at these low levels.

Wishing you well :)

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Vejay

Hi again,

Unfortunately your story is not unusual. Being given a tapering plan is all very well, but unfortunately life has a habit of getting in the way. Things happen which affect your PMR and as PMRpro says you need to do your but as well. Just because you’re on the medication doesn’t mean it’s gone! Far from it.

Have a look at attached -

One is a slow tapering plan which might help (takes a few weeks rather than overnight) - easier when you get to low doses, and the other is my intro to the disease and coping with it. Just a reminder -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

piglette
piglette
in reply to Vejay

Just take the dose of pred that you are comfortable with, having had PMR for over a year you will have much more idea than your doctor it seems. You can expect to carry on with steroids for probably at least a year if not longer. Very few people go into remission in less time than that. Steroids really are a wonder drug, unfortunately with side effects, but that is true of most drugs.

Hidden
Hidden

Sorry to hear that you continue to experience pain... I agree with Dorset Lady, perhaps you are on too low a dose, to be controlling the symptoms. I wish you the best of luck and hope you find relief soon. also I am sure if you provide the additional info that DL asked for, she and others will have lots of useful suggestions for you!

PMRpro
PMRproAmbassador

Your GP obviously doesn't know much about PMR: the right dose of pred is your painkiller - ordinary painkillers rarely work for PMR pain. You also have to do your bit - you have to make lifestyle and activity changes to be able to help manage the symptoms. The pred is only removing the inflammation, the real disease is still there and makes your muscles intolerant of acute exercise. I would suspect your bad days follow a good day where you have then overdone it - and I have only to carry heavy shopping bag into the house and my biceps remind of it for the next few days!

Pred is not a poison - it is your friend and what will allow you to live a better quality of life. It is managing rampant inflammation in your body - and preventing the damage it could do. It is a question of balance - enough pred to manage the inflammation means a minimum of longterm effects. Bear in mind that at below 7mg pred you are only taking the same amount as your body requires to function properly anyway. As the others say - go back to 5mg and see how you get on there.

Thank you I will try the extra dose and go back to 5g and see what happens

Thank you Vejay

HeronNS
HeronNS
in reply to Vejay

Do keep in touch and let us know how you get on. I'm down to 2 mg now, after three years and often feel quite well. But this morning owing to life circumstances getting in the way I walked all 10,000 of my steps in one go, usually takes me two or three smaller walks throughout the day, evening. When I came in and sat at the bottom of the stairs to take off my shoes I realized I literally had no energy left to stand up and had to ask my husband to hand me my glasses, which were about a metre away! After a few minutes I got up and made tea and had a snack, but since then (two hours later, it's nearly 1:30 pm here) have merely read a paper, solved a sudoku, and gone on line. The vacuuming (much needed) will have to wait!

The other point I want to make is once we are at the age we are (I'm 71) I think we've earned the right to do what we need to in order to feel as well as we can. The right dose of pred will make us feel better, even if it does have a few (manageable) side effects even at the low doses. Certainly better than we would feel without it, or if we weren't taking enough.

I wish I could find pain killers that actually do take the pain away! My pain seems to be in my left of right shoulder depends where it feels like going covers quite a large section under my breasts I can't raise my arms without the pain ! I also suffer with fatigue and it is a massive shock not to be able to move around like I used to not to be active, in fact it's quite disabling I have to use a wheeler now, I hate this horrid diseases but both of us are really early days into this, I think that if we keep reading from others on the forum it does help tremendously and learn from them, it must give us back some quality of life again!

piglette
piglette
in reply to Jamie345

Hi Jamie, are you saying that the pred is not helping the pain? You really should not have that amount if you have PMR and are taking a good enough dose to suppress the inflammation.

Jamie345
Jamie345
in reply to piglette

I am on 15m predisinone I was on12/12 but I had to put myself up to 15m as not doing well at all presumed it was a bad flare up, I could not see the rheumy last Monday as I was just too ill! But I'm a lot better I'm actually going to go for a short walk today, do you think I'm on the wrong level of predisinone ?

piglette
piglette
in reply to Jamie345

You should be on enough pred to make your life livable although you may not get rid of the pain totally. Did you have a good result when you first took pred? If not perhaps you should relook at your dose. The fatigue tends to be from the PMR. It really is a matter of pampering yourself and taking it easy.

HeronNS
HeronNS
in reply to Jamie345

I think one of the add-ons with PMR can be costochondritis, an inflammation of tendons(?) cartilage(?) in the rib cage. Not sure what the treatment is, but I think I've had a bit of it, not as severe as you describe.

piglette
piglette
in reply to HeronNS

Costochondritis is an inflammation of the cartilage in the rib cage, I had it and it is unbelievably painful. It just started and I found trying to breath even incredibly painful. It went away again eventually.

Mrs-CJ
Mrs-CJ
in reply to Jamie345

Hi, I sometimes get these vague area discomforts.....and I’ve discovered that applying heat several times a day helps that area to feel better. Eventually my aches in those areas go away (my PMR stiffness remains of course!). I use a bean bag and heat it in the microwave - not too hot - apply to my muscle area for about 20 - 30 minutes. Because it’s not too hot I leave it on the longer time.

It also helps if you know the name of the muscle(s) that are aching. Then you can look it up online and find gentle stretches for that specific area. I’ve recently strained a muscle that is just below my collarbone - I think it’s a pectoral- so I need to look it up. But I am applying heat - feels good!

Good luck!

Hi Vejay

Your doctor does not seem very helpful. He should probably refer you back to a rheumatologist as it sounds like you need to increase your steroids. I know they are dreadful, but they do sort out the stiffness and pain.

I am 61, but a 'young' 61, with a large garden, two horses and am very active. I have had PMR for 2.5 years. I was started on 20mg of Prednisolone daily and since then, my main focus has been to try and reduce the dose as much as possible. I managed to get down to 2mg/day and have been doing well for ages, with a little stiffness in the morning, and hardly any pain. My doctor is amazingly supportive, allowing me to book myself in for blood tests when I have been feeling relatively pain and stiffness free. I then reduce my dose one (or lastly) 0.5 mg/day.

However, over the past month I have been getting more pain and stiffness, resulting in waking up one morning with swollen wrists and unable to move my arms.

I went to see my rheumatologist who confirmed that I was experiencing a 'flare-up'. No-one knows why, sometimes it just happens. I have my suspicions however, as at the time my husband was suffering from a cold/flu which he had picked up from a recent flight we were on. I did not get the cold, but I have heard that exposure to some colds can cause a flare up.

Anyway, I'm now back up to 10mg/day! I was very down for a day or two, but now back to 'normal', with energy and no pain so I guess it's better the 'devil you know' with the steroids. I'm just going to pick myself up and start counting down the days to when I reduce to 9mg, 8mg etc.

If i were you, I'd speak to your Doctor and get him to refer you, or at least increase your dose for a while. Sometimes you have to pester and question what they say, or you will get fobbed off. My doctor knows I do not just 'google' stuff about PMR, but have joined the PMRGCAUK group which was formed by Professor Dasgupta, who is the main man when it comes to PMR.

I hope you feel better soon.

PMRpro
PMRproAmbassador
in reply to StaffsJM

You have noticed that this is a very old thread?

StaffsJM
StaffsJM
in reply to PMRpro

Yes, but the information may be useful to someone else, if not VeJay.

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