Understanding pmr

[Wooly68]

Hi I am a 49 year old male I have been diagnosed PMR since March 2016 I still dont really understand it completely but reading all the posts have been really helpfull I am down to 4mg per day of pred but still ache a fair bit but don't want to take anymore as I have also been told I have osteopenia which is thinking of the bones. The hardest thing to take in is the fact one day I was fine the next I was walking round like tinman off the wizard of oz

[PMRpro Ambassador]

It is your choice - but there is no virtue in not taking enough pred. You need enough to manage the symptoms as well as possible to have benefits to outweigh the downsides. I too have osteopenia - it is nowhere near osteoporosis and hasn't got any worse in the time I have been on pred, over 8 years. The pred allows me to keep mobile - which also helps bone density. Exercise, diet and supplements can all improve bone density.

4mg is a very low dose - and I suspect that you probably don't need much more to feel far better. At PMR doses, pred does NOT cause signifcant problems, at least, no more than you might experience anyway!

medpagetoday.com/rheumatolo...

[Wooly68 in reply to PMRpro]

Thanks for the advice. I may go back to 5mg for a while. As I do struggle a bit on 4mg

[PMRpro Ambassador in reply to Wooly68]

Once you are below about 7mg you are taking less corticosteroid than your body makes naturally anyway and which is essential to life. The natural sort is called cortisol - and your body either makes no more if the pred is more than the equivalent amount or makes just enough to top the pred dose up to what you need. So then there really is little ot be concerned about.

[markbenjamin57]

Greetings and Welcome Wooly68

Just a not-so-quick reply (as always!) before The PMR Aunties (experts) and others offer their opinions too!:

1. Assuming you've had a formal Dx of PMR (?), it sounds like you're doing well to be down to 4 mgpd Preds within 2 years. But at levels below +/- 7mgpd Preds (the physiological dose) this is often said to be the trickiest part of the PMR / Pred Journey since the sleepy, Pred-induced Adrenal Mechanism is taking its time to wake up again. So, Sllooww is best with reductions even at 4mgpd. I know - been there and got the T-shirt

2. Your description of the onset of your PMR symptoms is Classic! Yes, Tinman-like, and for some of Us Lot here, even worse until treated with the Preds!

3. As one of the relatively few of us 'Lads' here with PMR, and at a relatively young age, it's interesting to hear your story. Please keep reporting - it's very useful to this forum.

4. As for your Osteopenia Dx: (as far as I understand things) these results need to be taken in context and don't necessarily mean bone-thinning as a direct consequence of taking the Preds. Some people's DXA scan results (like mine, hopefully) might just mean that you had a slightly lower than average BMD in the first place, for whatever reason. Of course, this is difficult to assess without having had previous DXA scans as a reference point. So, it's not necessarily bad news: and, perhaps more important, a current Dx of Osteopenia is absolutely NOT a good reason to stop taking the Preds suddenly - which could have far more serious consequences in terms of triggering a possible dangerous Adrenal Crisis. That said, I'm sure others here will either support or qualify my opinion.. (n.b. I am not a medic - this is just from the knowledge gained from this forum).

5. (in my experience..) one of the greatest challenges for Us Lot with PMR (Male or Female) is to Accept that we are (hopefully) surviving quite a nasty - but not Life-threatening - Auto Immune illness which knocks the stuffing out of us both Physically and Mentally whilst it hangs around. My best analogy with PMR is that we suddenly have about 50% of our previous energy-battery levels, regardless of our previous levels of fitness. And, it takes longer to top-up that energy battery. Yep, it's a B****r!

6. There are quite a few articles and Posts here about 'Pacing' ourselves mentally and physically with PMR - try to have a look at them?

7. On the Positive side, PMR often can and does 'burn itself out' (a self-limiting illness), albeit that it can take from 2 to several years - and we often hear success stories here from PMR 'Winners'.

And finally, keep close to this forum - it's an invaluable and trusted source of wisdom, factual information and support. And.. we have some Fun along the way, in between the serious stuff!

Hope this helps you as a 'Newbie' here..

Best wishes

'Uncle' MB

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[Wooly68 in reply to markbenjamin57]

Thanks.for the advice it does seem to get more difficult every time I get below 7mg. It's not personal but you do feel like your GP doesn't quite understand.I will definately be keeping in touch👍

[markbenjamin57 in reply to Wooly68]

Wooly, check out the DSNS (Dead Slow Nearly Stop) tapering method, especially at below 7mgpd Pred. You'll find plenty of info about it here. No guarantees, but for many people with PMR it helps to either avoid or minimise the risks /effects of flare-ups

[Wooly68 in reply to markbenjamin57]

Will do thanks again.

[Jura1959 in reply to markbenjamin57]

Hi

Uncle MB I read your reply to this with interest and appreciate what you are saying.

I was diagnosed Jan 2017 put on 15mg of pred and tapered down to 0 mg in less than 12mth but yes it started back up so doctor puts me on 15 mg pred again and this time I get very ill losing weight since before Christmas and getting pains and fogginess in my head and now been increased to 30mg of pred waiting to see a specialist.

I find it hard to take it easy due to having young family and like being able to do most of the maintenance/diy myself around the home to save on cost etc.

Would be nice if I could find some assistance because everything falling apart just can't keep up this illness 😠😤 I'm male and 58 yes old still working when able.

And also like are newbie I find the doctor just don't seem to listen or understand

[PMRpro Ambassador in reply to Jura1959]

The only people who understand are those who have or have had an autoimmune disorder themselves. So that rules out most doctors who then run on the assumptions that are perpetuated by other doctors who believe that once you are on medication, especially, as in our case, steroids, we will be totally back to normal. And as you know - we are not.

[markbenjamin57 in reply to Jura1959]

Hi Jura

Sorry to say it but it sounds like you reduced too quickly to Zero. 12 months is unusually fast for most people with PMR to get off the Preds and / or for it go into remission.

Did your GP encourage (or insist on, as some do) this rapid rate of tapering? Quite a few people here report the same, only to have a massive flare-up in symptoms and then the need to bounce back to a much higher dosage to get the PMR inflammation under control. And that, in turn, makes the process longer overall. As always, SLOW is best - check out the DSNS (Dead Slow Nearly Stop) tapering method (you'll find it somewhere here) - and take a view / push back if your GP is insisting that you reduce faster. Not all GPs are familiar with the latest research and wisdom about Steroid tapering...

I know what you mean about DIY / maintenance jobs - I'm the same. But if the lack of energy, increased pain / stiffness etc are getting to you, it's best to try to prioritise and only do the essential jobs. Otherwise, if you push things too hard, you'll pay for it later. Check out the Spoons Theory for managing and pacing your physical and metal energy. Again, you'll find plenty of info and Posts about it here..

One of the things I'm sure many of us (men and women) with PMR also find difficult to do is to ask for Help with practical tasks that we suddenly struggle with. A 'Pride' thing, maybe?

But it's surprising how people (nearest and dearest, neighbours, colleagues etc) will rally-round when they truly understand what PMR is, and how this nasty illness can affect even the fittest of us. I find that by explaining the '50% of usual energy / strength / stamina' feeling, people often 'get it' and offer to share the load.

Try to stay Positive, fingers crossed your specialist will give you a clearer picture of things - keep us posted?

MB

[CT-5012]

Hi, your GP probably doesn't quite understand as your GP doesn't have PMR! It's difficult for others to grasp the fact that when your battery has run out it's gone. Like me my brother also has PMR/GCA he got off pred quickly but a few months later was back at square one, there is no point in putting up with pain or stiffness you need as much pred as you need. Keep smiling it make everyone wonder what you have been up to! 😊

[markbenjamin57 in reply to CT-5012]

Totally agree, CT.

[Rugger]

Kate Gilbert's book : Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide might help you understand it better. It's well written and easy to read.

It's available through the PMRGCAuk charity website or online booksellers.

[Wooly68 in reply to Rugger]

Thanks 👍I will have a look into that