I was nearly there......

[Deneez99]

Diagnosed with PMR in Oct 2020 and after a couple of flare ups I eventually got down to 1mg every other day....This was 4 weeks ago. I went downhill fast and almost felt I was at square one.

I went to see my doctor and we both agreed that I should go back to 5mg a day for 1 week then drop to 2mg and see how I feel. This will be my second week on 2mg and so far I feel OK.

My question is how much longer it's been two and a half years now will I ever get to the end....

I am getting older and my lack of exercise is making things worse.

Help xxxx

[DorsetLady PMRGCAuk volunteer]

You will get to the end.....but maybe? [certainly] not as quickly as you'd like.

From now on I'd be inclined to drop 0.5mg a time... and using a slower tapering method - see this for examples - rather than an alternate day [as you were doing] - much easier on body/PMR -

healthunlocked.com/pmrgcauk...

..and 1mg alternated with zero is a big difference for the body to cope with day on day... more slowly this time...

[Deneez99 in reply to DorsetLady]

Thank you I will take it very slowly and I am sure one day I will be free xx

[PMRpro Ambassador]

A large number of people need a low dose of pred for 4 to 6 years and more - only about a third are entirely off pred permanently in 2 years. On the other hand there is a small group on the forum who are still on pred after 10+ years,

I think you should focus on being grateful you have got to such a low dose and there is little to stop you doing some exercise but you will have to start small and build up slowly after two years. Don't look at it as being "free of pred" but as being "able to live normally while ON pred" which is why you take it.

I'm absolutely not suggesting this level of exercise yet - but Skinnyjonny started running again while on pred and eventually got almost to the top of Annapurna IV post PMR, Read his bio

healthunlocked.com/user/Ski...

[Deneez99 in reply to PMRpro]

Thank you so much for your reply and you are absolutely right and I will try to get on with my life. Feeling more motivated now xx

[piglette]

As PMRPro says, you can still do some exercise. Is there anything you enjoy doing? Perhaps you could try something new? I go swimming which I love. There is a local fitness group in my village which someone has set up for over 60s. I suspect they spend more time getting together to eat apple pie after the keep fit bit though!

[tempusfugi in reply to piglette]

Like the sound of that local fitness group, piglette!😉

[piglette in reply to tempusfugi]

I think I will write to my local Medical Centre and recommend it. Probably a waste of time on the other hand as they don’t even bother to read letters sent from the hospital!! However they are supposed to be social prescribing as their latest grand plan.

[tempusfugi in reply to piglette]

Ooh! Social prescribing - that's a new one on me (trust it's not just for the medical staff)😃

[piglette in reply to tempusfugi]

Social prescribing enables GPs, nurses and other primary care professionals to refer people to a range of local, non-clinical services to support their health and wellbeing. Ho ho ho. They are going to employ people in our GP surgeries for it, these are link workers who listen to people and try to understand their situation, and what matters to them. They then “link” that person to organisations and information that can help.

[tempusfugi in reply to piglette]

Well blow me! I guess it could have it's advantages then for some but one feels the money used to employ people would be better used to employ a Dr, at least, for more f-2-f appointments. The fact that there are no Drs anymore to employ could possibly be a disadvantage🤣

[PMRpro Ambassador in reply to tempusfugi]

Was just going to make your final point ... They don't grow on trees!

[tempusfugi in reply to PMRpro]

Unlike spaghetti! sorry, couldn't resist that. Well, it is April, after all!

[PMRpro Ambassador in reply to tempusfugi]

Not here - March has arrived!I made the mistake of going into town - I got what I wanted and finished nicely for the bus which was said to be 3 mins late. Quarter of an hour later still no bus but an east wind straight from the steppes ... Bruneck got the doubtful accolade today for the windiest place in the region. That doesn't happen often!

[tempusfugi in reply to PMRpro]

March winds, then. You best check the weather, via the Beeb, before you venture out in future, PMRpro!

[PMRpro Ambassador in reply to tempusfugi]

More reliable to stick your head out the door ...

Just had a look - light winds!!!!! It was frosty this morning - they claimed 3C - and there was a chance of rain all day, not a rain cloud to be seen.

[tempusfugi in reply to PMRpro]

See you not too keen on the Beeb then!!

[PMRpro Ambassador in reply to tempusfugi]

Um. Not really! They have the occasional decent programme ...

[tempusfugi in reply to PMRpro]

Have to say, they are getting fewer and fewer (decent programmes, that is)😏

[PMRpro Ambassador in reply to tempusfugi]

You can say that again!

[tempusfugi in reply to PMRpro]

I say, they are getting fewer and fewer🤣😂

[PMRpro Ambassador in reply to tempusfugi]

Oh ha ...

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

Well they aren’t very accurate at best of times……best hang a piece of seaweed outside the door!

If it’s dry and stiff -going to have sunny weather,

If it’s wet and supple - it’s going to /or is raining,

If it’s gone -it’s bloomin’ windy! 😳

[tempusfugi in reply to DorsetLady]

If I wasn't about to go away for Easter, I'd be down on the beach tomorrow!

[PMRpro Ambassador in reply to DorsetLady]

We had the doubtful privilege of being the windiest place in the region today - straight from Siberia ...

The seaweed wouldn't have stood a chance in town!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

💨Hang on to your hat - or whatever sort of day then !

[PMRpro Ambassador in reply to DorsetLady]

I could feel myself being blown around waiting for the bus back

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not pleasant is it -especially when you get gusts as well…

[Sharitone in reply to tempusfugi]

To be fair, when I was representing disabled people at benefit tribunals, there was a new social prescriber at one of the local surgeries who did contact me, and therefore some very poor people had their lives made more possible, including a more acceptable diet. She even attended the tribunal with one lonely soul.

[tempusfugi in reply to Sharitone]

Hi Sharitone, sorry, didn't mean to sound unfeeling. I'm sure social prescribers must and will have their advantages as you describe above. And, come to think of it, more in this day and age than ever. Point accepted.

[Sharitone in reply to tempusfugi]

I don't think you sounded unfeeling. And it's true that a few more doctors would be even more useful.🙂

[HeronNS in reply to piglette]

Maybe a first step towards health care, as opposed to the current model of sickness care? Our so-called universal health care system doesn't cover dentistry, physiotherapy, dietetics, optometry, audiology, podiatry, occupational therapy or any other modality which helps keep people healthy or at least well enough to reduce the need for medication or surgery.

[PMRpro Ambassador in reply to HeronNS]

Physio and dietetics and ergotherapy are covered here. There are possibly cheaper options for dentisty than my guy but he is awfully good. They are all tax deductible if you don't lose the bill!!

[HeronNS in reply to PMRpro]

We have private insurance which covers a lot of the rest. But what about the many people who don't have the money in the first place, let alone those who don't even earn enough money to pay tax to get deductions from.

[piglette in reply to HeronNS]

In UK now you don’t get a ‘sick note’ but a ‘fit note’!  Meaning you are unfit to work.

[HeronNS in reply to piglette]

1984.

[piglette in reply to HeronNS]

I like it! Big brother is watching over us!

[Koalajane]

I have had PMR for over 6 years and only on 5mg of pred.

I walk at least 10,000 steps a day and love walking. I started walking a lot less and have built it up. This is my exercise and hopefully if you have managed to taper so low you will be able to walk.

Good luck and be patient

[tempusfugi in reply to Koalajane]

Got to say well done to all those steps, Koalajane👍 How much is that in miles, btw?

[Koalajane in reply to tempusfugi]

about 4 miles

[tempusfugi in reply to Koalajane]

Thanks, Koalajane. I really should do similarly...

[Grammy80]

Just wanted to add that I am down to 2.5 mg and feel fine, no symptoms. However, to me 'the end' is when I feel well. If symptoms of GCA return as I continue to taper; I'll be one of those gals who takes a small amount for the duration.💞

[Deneez99 in reply to Grammy80]

Grammy80 how do you take .5 mg do you cut a tablet in half. Just asking xx

[PMRpro Ambassador in reply to Deneez99]

Depends where you are, what sort of tablets you are on and the dose. In the UK where you are there are 5mg, 2.5 and 1mg prednisone tablets if you are on enteric coated and also if you are on plain pred though cutting a 5mg tablet is as good for getting 2.5mg, Down to 2mg you can combine those doses to get the dose you need, For 1.5 and 0.5 you have to cut a 1mg tablet which is a bit fiddly but doable.

[Deneez99 in reply to PMRpro]

Thank you xx

[HeronNS in reply to Deneez99]

But you can't cut the coated tablets, just the plain ones.

[Sharitone in reply to Deneez99]

If you have flat 1mgs, you can even cut them into quarters. Convex ones crumble too much, though.

[Grammy80 in reply to Deneez99]

Deneez99, I have only reduced by .5 per taper. I got a sharp pill cutter at the pharmacy to cut my 1 mg tabs. Sometimes I worked with a small variety of dosages depending on where I was on the scale...I'm in the states, and I've only seen 20, 10, 5, and 1 mgs. No 2.5's here. 💞

[tempusfugi in reply to Grammy80]

Grammy80, I would like to be a gal like you! Love the way you write😀

[Grammy80 in reply to tempusfugi]

You are!! I only try to give back for all the forum has done for me~~never alone, right?💞

[Grammy80 in reply to tempusfugi]

.....I must add I have Grammarly on my computer, which corrects my errors.😏😉

[tempusfugi in reply to Grammy80]

Very honest of you! Grammarly for Grammy80😄 I've never met anyone who has Grammarly. Do you like it?

[Grammy80 in reply to tempusfugi]

I love it!! It is free and covers anything everywhere you write on your computer..sometimes it acts up with Google Docs. 💞 Sometime soon, I hope to write a book and will purchase the Premium then...small book on a visit to Russia.💞

[HeronNS in reply to Grammy80]

I tried Grammarly and because I guess I have an idiosyncratic style (not to mention the typos) it rapidly drove me nuts, so I gave it the boot!