Newly diagnosed: I have just had confirmation of... - PMRGCAuk

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Newly diagnosed

JanetT58
JanetT58

I have just had confirmation of Polymyalgia today and have started on 15mg of Prednisolone, I suspected I had it as my Mum has it and I have been suffering with neck, hip and shoulder pain for a few weeks last week I was give 40 mg of Prednisolone a day for 5 days and had instant results but the pain came back with avengance when I stopped taking them , last night was the worse and today I’ve hardly been able to walk. I’m sure from what I’ve read that the steroids will give me some relief but I’m worried about how long the pain will last and whether it will come back when the dose is reduced as my .mum always suffers when hers is reduced and has been on them for a long time. Some articles suggest you can be cured after a couple of years is this correct?

24 Replies
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PMRpro
PMRproAmbassador

About 1 in 5 patients find they can manage without pred after a couple of years - but the average duration is 5.9 years I'm afraid. But once you are on pred you should be able to live a fairly normal life providing you also adjust your lifestyle a bit. I've had PMR for 14 years - I've had problems but now it doesn't stop me doing much.

I would suspect your mum has been given unrealistic tapering plans and that is one thing we on the forums and in the charities spend a lot of time fighting!! When you go about it properly most of your pain should be managed - it is unusual not to be though it does happen so I won't promise - and you should be able to reduce without bad withdrawal problems and without flares. In a year you will look back and see how far you have come.

In the meantime, 40mg was a very high starting dose, even to diagnose PMR. other things would respond to that too. However, if the 15mg isn't enough to get a good result, ask to try 20mg. But you really shouldn't need much more than that.

There are a load of links in this post on another forum which you will find helpful and informative:

patient.info/forums/discuss...

and in the replies section is a slow reduction plan that has helped many people and is being used in a clinical trial.

This is also useful and comforting:

medpagetoday.com/rheumatolo...

If you have any questions - just ask.

JanetT58
JanetT58 in reply to PMRpro

Thank you, I should have said that the 40mg was actually prescribed for my Asthma but I mentioned the pain to the doctor and he said that if the pain also cleared up with the Prednisolone it was a good indication of the PMR.

PMRpro
PMRproAmbassador in reply to JanetT58

Fair enough! I do hope the 15mg has a similar effect - though it might take a bit longer. I had the miracle in under 6 hours with 15mg - but not all of us do. Fingers crossed though!

JanetT58
JanetT58 in reply to PMRpro

Thank you the pain has eased already but still achy.

PMRpro
PMRproAmbassador in reply to JanetT58

Don't go rushing around doing the cleaning you haven't been doing!!! The pred is only relieving the inflammation and has changed nothing of the actual underlying cause, an autoimmune disorder that is causing your immune system to attack your body tissues by mistake, thinking they are foreign. That makes you feel achy and flu-ey and using your poor muscles makes it worse. You will be able to do more eventually but you have to "get into training" - starting with just a bit and building up slowly. And REST appropriately, do a bit, rest a bit. Know your limits and don't exceed them! However well you think you feel - PMR is famed for biting back ;-)

And here's some reading that will help you understand what we mean:

healthunlocked.com/pmrgcauk......

JanetT58
JanetT58 in reply to PMRpro

Thank you that is useful information

Alliand
Alliand in reply to PMRpro

Hi PMRpro, In your experience, do you think that a temporary vision loss during taper should prompt a scan of brain vessels? An angiogram I suppose? Thanks.

PMRpro
PMRproAmbassador in reply to Alliand

What sort of scan? Brains are notoriously difficult to scan - PET-MRI doesn't show anything as brain takes up a load of glucose and so anything is swamped. An angiogram does carry with it the risk of a stroke. But it should trigger a speedy trip to ER/A&E - just in case. Let the experts decide.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Janet,

Welcome,

The attached may give you, and your mum (even though she’s had it for a long time) a bit more info about PMR.

As PMRpro says please come back with any further questions.

healthunlocked.com/pmrgcauk...

JanetT58
JanetT58 in reply to DorsetLady

Thank you that is very helpful

Hello janetT58 and welcome to the site. It’s great that you found us at the beginning of your journey, this forum makes everything much easier. I see that you’ve already had a starter pack of info from two of our most expert members. Ask your questions as they arise. It will be helpful for your mum too.

Thank you I will definitely use this site it’s great that everyone is so helpful.

Hidden
Hidden

Welcome. With luck both you and your mum will benefit from the discussions on this forum. Hopefully you will start to feel a bit better soon. Don't suffer in silence and as been said if you need to ask Dr to increase to get inflammation under control speak to the Dr. Once you FINALLY start to taper then don't be rushed. With a condition like asthma you probably know about not pushing your limits. Same applies to PMR, you have to pace yourself (easy advice to give...harder to follow!!!).there are several people here who have excellent knowledge and are happy to share. I have found it a vital part of my support system.

There is a lot of fab advice on here, but a positive tale may help. I started PMR in November 2014, though wasn't diagnosed till March 2015. I had the four hour miracle on 15mg of Pred, slowly tapered down till June 2016, but in November 2016 I went back on 5mg as the pains were coming back. Reduced again till May 2017 when I was back at zero. I am now completely back to normal, except for a slight weakness in the knees, which may be age-related anyway. All the energy (lots!), fitness etc. that I had before. Hope this helps - it can happen!

JanetT58
JanetT58 in reply to Lyn_seaside

Lyn thank you that is so helpful I was worried as I know that every time my mum cuts down she’s in a lot of pain so,it’s great to know that a full recovery is possible I think I’ve got to be patient and see how things go.

Glad you are back to normal it must be great.

It is! And my normal is very busy and energetic. Hope you get a similar result - but it does take time! Meanwhile, listen to all the experts on here, they are so helpful!

JanetT58
JanetT58 in reply to Lyn_seaside

That is so good to hear until a couple of months ago I used to walk Hal an hour to the gym do a class and walk back twice a week and do Pilates and the odd spinning class, last time I did Pilates I was nearly in tears with the pain and frustration and haven’t been to the gym since the pains started.

Have been. Worried about losing fitness and putting on weight but hopefully will be able to get back to do something in future even if on a lower level.

Lyn_seaside
Lyn_seaside in reply to JanetT58

I did Pilates all the way through, though at times I was embarrassingly useless. I also dog-walked every day (because I had to) and worked full time (again, I'm self-employed so I had to. I'm now back to four / five miles a day, pilates and a very busy day job running a hotel. I put on a stone at the beginning, but lost it quite quickly (5:2 and low carb). I'd say keep trying to do something once the Pred kicks in, that way you can keep some level of fitness going. I know I was lucky - hope you are too!

PMRpro
PMRproAmbassador in reply to JanetT58

Like Lyn I did Pilates all the way through 5 years of untreated PMR - but I had a fantastic teacher who adapted exercises for me. I also used to do an aquafit class every day which was about the only thing that kept me mobile enough to be able to do the Pilates and an Iyengha yoga class, also heavily adapted. But EVERYTHING was done at my level, no competition to be best in class, that way lies a minor disaster!

It so happens I haven't done classes since I started pred, I moved and where I live now there is no possibility of affordable classes or a suitable pool anyway but I walk at least 1/2 hour every day when the weather allows. I have walked much less over the winter and after 3 weeks in Malta where we were able to walk probably 4 or 5 km almost every day my legs and especially knees are reminding me they are there! They'll get over it! ;-)

Hi Janet,

I started having symptoms in oct 2016, took 2 weeks to get in to rheumi, though I was pretty sure it was pmr. She gave me 15....took a few days to feel MUCH better. After a few weeks, I still felt a bit symptomatic, arms etc, so I asked her to go to 20...we did that for a month, then started down to 17.5 etc. I am now down to 3, but remain on each level probably longer than most, (sometimes 6 weeks) as I have wanted to avoid the dreaded flare...so far so good! I pretty much wait until I have no obvious pain before reducing, usually 4 weeks. (That doesn’t count the unbelievable stiffness from sitting for 30 minutes, or overdoing things).

It is very important to put the wildfire out completely (or at least 70%) before thinking about tapering. I think most doctors really want to rush you off of prednisone. Maybe mom never got that wildfire put out to begin with?

You’ve hit on the right place to carry you through this journey! Stay tuned!! 😉

Thank you the steroids definitely helped after one day but feel a bit bruised today but 100% better than the agony of yesterday

PMRpro
PMRproAmbassador in reply to JanetT58

This week REST!!!! There's plenty of time, As LJ says, let the fire get well doused first. Then work from there.

JanetT58
JanetT58 in reply to PMRpro

Thank you will do I’ve realised that I need to take it easy for a while.

PMRpro
PMRproAmbassador in reply to JanetT58

That's why I have said it a few times!!!

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