PMR Newbie

[Lola62]

Hi. I have been on 40mg of prednisolone for a week and today started a week of 30mg. But when trying to get ready for work in the morning I feel so light headed and find it is slowing me down. Is this normal?Thank you Lorraine

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

40mg is high for PMR, it’s usually the starting dose for GCA… and even down to 30mg it’s no wonder you are feeling woozy. Usual starting for PMR is 15mg although anywhere between 12.5 mg - 25mg. Bit more info in might help us understand why such high starting dose

Have a look at this introductory post-

healthunlocked.com/pmrgcauk...

You will get more replies, but just be aware forum will be off line for a while this morning [8 April] for maintenance so don’t worry if you can’t get in.

[Lola62 in reply to DorsetLady]

I was diagnosed last week by a private Rheumatologist as the NHS wait is 43 weeks here in Kent. I was in so much pain I couldn't wait that long. And that must be the regime he uses: a week each of 40,30,20,15 and then a month of 10mg and then back to see him.

[DorsetLady PMRGCAuk volunteer in reply to Lola62]

Okay, fair dos.. he obviously finds it works. The feelings you have should ease off as you reduce, but as my link say, the PMR isn’t gone so don’t think just because you are on meds it’s gone away, it hasn’t. So just be a bit careful in what you do… and best of luck.

Please do keep in touch..and if you are really struggling then you need to speak to Rheumy .

[Lola62 in reply to DorsetLady]

Thank you so much for your support x

[Lola62 in reply to Lola62]

I did think it was a very high dose from reading up on PMR, but as I am new to this I have put my trust in my Rheumatologist. We will see how it goes. I will keep you posted x

[Charlie1boy in reply to Lola62]

Crikey, that’s a bit different to what we normally see. High starting dose and a mega quick reduction to 10mg.

For what it’s worth I was at 30 mg for a while, but stayed at that level for two weeks, then to 25mg for two weeks, then to 20mg for two weeks. After that it was 17.5mg for two weeks, then five weeks at 15mg, whereupon I slowed down significantly and reduced by no more than 10% of the dose..

My overall experience with PMR was never to reduce if I was aware of any PMR pain symptoms. There is always the risk that you reduce too fast, or too far to be sure you have enough pred to look after the inflammation.

To be sure you may be able to cope with such a fast taper plan, but I wouldn’t count on it. You may need to slow down. For your sake, I hope it does work for you.

For the record, I also support other’s comments about feeling woozy on the higher doses, but that element does improve as you reduce.

Good luck.

[Lola62 in reply to Charlie1boy]

Hi Charlie. I have already thought about the tapering and asked my GP to prescribe me 112 spare prednisolone to cover me if I need to stick to a higher dose for longer, so hopefully she will. Having read everyone's replies I thought it would be better to be safe. Thank you so much for your thoughts x

[Charlie1boy in reply to Lola62]

Methinks that was a good idea to have plenty of prednisolone in stock; I certainly did and it did come in useful on occasions.

Also, although most probably not needed yet, I recommend you buy a pill cutter for future use. I got mine, “safe+sound health” online, but most phamarcies will have one.

[Lola62 in reply to Charlie1boy]

Oh lovely, thanks Charlie 😁

[Groggrim in reply to Charlie1boy]

Would you recommend that pill cutter Charlie? I've been using a backed craft blade but since needing to cut 1mg pills to make 0.5 I worry for my fingers' wellbeing 🙄

[DorsetLady PMRGCAuk volunteer in reply to Groggrim]

I used same brand

Pillcutter

[Lola62 in reply to DorsetLady]

I've just ordered one from Amazon 😁

[Charlie1boy in reply to Groggrim]

All I can say is that it has worked well for me. I’m off pred now, but use it to cuts for our pesky cat!

[Lola62 in reply to Charlie1boy]

Hi Charlie. How long did it take for you to get off prednisolone?

[Charlie1boy in reply to Lola62]

Seven and three quarter years. It was a VERY slow taper at the end, but at least I managed to avoid having any flares. It was the adrenal glands getting back to normal that was most responsible for the slow progress.

[Lola62 in reply to Charlie1boy]

Oh wow! That's a long time. Why on earth do Rheumys tell us they will have you off in 18 months I wonder, it is very misleading for us sufferers.

[DorsetLady PMRGCAuk volunteer in reply to Lola62]

Because much of the paperwork states 2 years..; and for some it is , but certainly not for all..

healthunlocked.com/pmrgcauk...

[Charlie1boy in reply to Lola62]

Couldn’t agree more. One of the biggest issues is managing expectation, which is certainly not made any easier by GPs or rheumatologists.

Luckily, my GP told me at diagnosis “ it could be two years, could be longer, or could be chronic “.

Wise words indeed!

[Suffererc in reply to Lola62]

I was 6.5 years. Two flares the most recent 2 months ago and so far this time it might have worked. No Pred since March 11 . Good luck

[Lola62 in reply to Suffererc]

Oh wow! That's a long time. Thank you 😊

[Suffererc in reply to Lola62]

Only 1:4 get off Pred in 2 years. Of the rest 50% get off in 6 and rest are on a low dose for life. Not many GPs give out the right information cos they don’t know themselves. This is the best site for help and information

[Lola62 in reply to Suffererc]

This site is amazing and everyone are so helpful x

[Bcol in reply to Lola62]

Four years and a couple of months for me. Been off Pred since August last year and so far so good. I had a few days on 15mg, then a week on 30mg, a week on 25mg then tapered down slowly from 20mg.

[Lola62 in reply to Bcol]

Well done to you for getting off of them xx

[ChrisBeeLoop in reply to Groggrim]

Deffo buy a pill cutter!

[Lola62 in reply to ChrisBeeLoop]

It's on its way 😁

[Groggrim in reply to ChrisBeeLoop]

I have ordered the one shown here as it has good reviews. I had one some years ago that mashed up the pills 🙄

[SudsSuds in reply to Groggrim]

Try asking for 0.5mg tablets. I was recently prescribed them.

[lizienellie in reply to Lola62]

Hi. I was the same as you. Started on 40. I’m now down to 12.5 but I’ve been told not to work for a few weeks because of the side effects. They are horrendous by the way. You need to rest and let your body ‘get used to’ the changes, although I still haven’t. They do ease up though. It’s a long tough road. Hope you get relief soon.

[Lola62 in reply to lizienellie]

Hi Lizienellie. How long did it take you to get to 12.5 and what schedule did you get there with? X

[DorsetLady PMRGCAuk volunteer in reply to lizienellie]

. They are horrendous by the way.

Unpleasant maybe, horrendous no.. and I started at 80mg..

[SnazzyD]

If you really have to be on 40mg for PMR (usually max 25mg) take it seriously if you feel unwell on it, especially if you are driving. It can make one feel quite rough but it is dose dependent but be like this forever. It made me so wafty and woozy and my memory was off, such that I had to stop driving until the dose went down.

[Lola62 in reply to SnazzyD]

Thank you for your help x

[spoof99 in reply to SnazzyD]

same here I didn`t drive for 2 months while on the higher dose 60,50 and 40...just felt off dizzy and such...30 was okay, starting 20 tomorrow.

[Lola62 in reply to spoof99]

I've just started 30mg today. I didn't realise how much steroids affect you in so many different ways. It can be quite hard going can't it? But well done for getting to 20mg x

[spoof99 in reply to Lola62]

it is a strange feeling...before the Prednisone I had all the normal aches and pains of a senior citzen and within hours of my first dose of steroids they were all gone😀 but the side effects are nasty but better than going blind....The taper from 60 to 30 has been pretty smooth but I do worry about the 20 level...hopefully it goes well!

[SnazzyD in reply to Lola62]

They don’t tell you how you’ll feel but until you have been on it, you can’t know other than in vague terms.

[Sophiestree]

I started on higher doses but am amazed you are going to work. Can the GP not sign you off. You need time to adjust to what's happening to you. It's a big shock both physically and mentally.

[Lola62 in reply to Sophiestree]

Hi. Yes, I am on a phased return sick note for a month so I can go to work later than usual. I don't like to say have too much time off so I try my best to go in. Thank you x

[DorsetLady PMRGCAuk volunteer in reply to Lola62]

That’s all very well and good- but PMR is a recognised illness under the Equality Act and your employers have to make necessary adjustments to your working conditions to help you.

[Lola62 in reply to DorsetLady]

They are very good, it is me that is choosing not to have the time off to be honest. I did have time off when I was in debilitating pain a couple of weeks ago as I really couldn't cope with it. Going in later is helping. I really don't like this getting old lark!

[DorsetLady PMRGCAuk volunteer in reply to Lola62]

I really don't like this getting old lark!

Better than the alternative! 😊

[lizienellie in reply to Lola62]

But you need to realise this is your health. As tough as this will sound you need to think of yourself. They will replace you in a heartbeat. You need to look after yourself

[Groggrim in reply to lizienellie]

I learnt the hard way that there is only one way to deal with this process and that is slowly and mindfully. I'm sure if I had taken more notice of the wisdom offered I would not have had such an up and down journey with Pred over the last seven months. Someone said on the forum the other day 'accept, adapt and apply'. I remember because it was three As. I'm now listening 🙂

[Lola62 in reply to Groggrim]

I am only a week and a half in and I have learnt so much already from you lovely people, and I'm going to do exactly that! Thank you so much for all your help ☺️

[Groggrim in reply to Lola62]

We went on holiday soon after my diagnosis. I had just joined the forum but didn't listen to the advice properly. I thought as we were on holiday I'd be ok, but soon after coming home I started to get more symptoms. You can only help someone if they want help and I thought I knew best and didn't listen. I'm listening now and finding a better way of walking this path. Our son is about to start an epic walk for charity and he did months of preparation. I think of him when I try to rush this PMR process and realise it can't be rushed. I have learned a lot and am grateful for the patience of the members who have offered help and advice.

[Lola62 in reply to Groggrim]

Oh bless you! Are you in UK or US?

[Groggrim in reply to Lola62]

I live in the UK

[Lola62 in reply to Groggrim]

Me too

[Lola62]

Yes, you are right. I did say that to someone the other day funnily enough 😁

[Pippah45]

Hi Lola sorry to welcome you to the forum. I have one piece of advice and that is to take heed of people on this forum they have been there and done that. Also be patient - it can be a long haul and reducing too slowly means having flares which are not pleasant. My GP referred me to this forum bless her and they have helped me so much more than Rheumies etc that I have met since. Slow and steady.

[Lola62 in reply to Pippah45]

Thank you and yes I am taking every bit of advice from all you lovely people. I have gone back to 40mg today and will take until the pain subsides and then try a drop of 5mg. Hopefully that will work better ☺️

[Lola62 in reply to Lola62]

Do you mean reducing too quickly Pippa?

[readingbooks in reply to Pippah45]

Reducing too quickly !!!

[Lola62 in reply to readingbooks]

Thank you lovely x

[Crusty1949]

Biggest thing to remember, “it’s a marathon, not Sprint. It took me over two years to taper to zero. During my travel I had several flares but eventually got to the end. My rheumatologist reminded me that PMR is like shingles, it is always hiding, just waiting to raise its ugly head. She gave me what she calls “pocket pills” just enough prednisone to knock down a flare if it occurs. I have now been clean for over four years but still religiously carry my insurance pills.

Long story short, 40 to 30 may have been too much. Hang in there, your PMR friends are always here for you.

[Lola62 in reply to Crusty1949]

Thank you Crusty, great advice 😊

[Crusty1949]

Lola, I should have added, I dropped on an average of 5mg prednisone/ week but sometimes it was as little as 1.5mg. Your body will tell you what’s right for you. Again, don’t rush it, nothing worse than thinking you are making progress only to have it crash down. My rheumatologist, this group and my wife were my , go to, support group. Friends make a big difference, you are not in this alone.

[Lola62 in reply to Crusty1949]

Thank you. I have now managed to email my Rheumatologist and he has given a slightly slower regime to follow. But to be honest with you I think I will do it my own way anyway with the advice of all you lovely people ☺️ xx

[Groggrim in reply to Lola62]

Hi Lola, I have found that can be the best way. There is so much advice and help available here. I made mistakes early on, tried the doctor's way, tried the rheumy's way (what a farce that was) then tried it my way. Finally I tried it the forum way - duh! 🙃

[Lola62 in reply to Groggrim]

Thank you, I hope you are coping well with it x

[Groggrim in reply to Lola62]

Better now thanks Lola x

[Lola62 in reply to Groggrim]

Wonderful news x

[Crusty1949]

PMR Polymyalgia Rheumatica

My Pretty Miserable Reality

Written and Illustrated by

Christine Knippenberg

Lola, look for this book, it gives a great overview of PMR, in a silly, ridiculous sort of way. I’m sure you will enjoy its antics while learning more about the ins and outs of PMR. 😅

[DorsetLady PMRGCAuk volunteer in reply to Crusty1949]

It is the FAQs -

healthunlocked.com/pmrgcauk...

[Crusty1949]

DorsetLady has all the answers, she the boss. 🥰🥰🥰🥰

[DorsetLady PMRGCAuk volunteer in reply to Crusty1949]

Cheeky!.. and not quite all of them…

[Crusty1949 in reply to DorsetLady]

I call them as I see them. 🫣