PMR Ups and Downs

[Paulx222]

So

I have been diagnosed with PMR and originally started on Prednisolone 30mg.....this plan was changed by my NHS Rheumatologist to 15mg over a longer period.

I switched to this dose on Tuesday of this week and initially I didn't notice any difference.....if anything, by Thursday I almost felt at 100%.....honestly, I felt absolutely GREAT.....

But then yesterday and this morning (Saturday) I've noticed symptoms returning on waking.....nothing like when I had no meds but it's definitely back and today is the worst I've been

Question I have is.....is this the way? Will I have good days and bad? Is this change due to me cutting the dose in half and it's just taken a bit of time to take effect? Will the overall trajectory be better or if this continues do I need to go back to a slightly higher dose or have I just got to suck it up a bit and accept that this level of morning stiffness and pain is kind of going to be the way it is for sometime?

I'm a bit disappointed tbf having been SO well on Thursday but I suppose, as my Rheumatologist and very learned experts on here have said......this is the start of my journey and more patience is required.

Hope everyone is enjoying a nice break and looking forward to Christmas 🎄

Paul

[PMRpro Ambassador]

Personally, I think cutting the dose to 15mg was a bit extreme, it is the bottom of the starting dose range where 30mg was just over the top. 20mg would have been better, However - what did you DO while you felt so much better? You WILL have good and bad days - and bad days tend to follow good days when you did more! And I don't think we've asked before - are you a strapping young man? Big or slightly built? More body tends to need more pred. logically enough.

[Paulx222 in reply to PMRpro]

You're like Colombo PMR Pro 😂

How did you know!???

When I felt good......I carried a mattress from one property to another up two flights of stairs, I did the Christmas shop at Lidl and I constructed a new bed after carrying it upstairs.....

Almost like you were watching me !! You're right.....looking back....yes ......I did more than I should 🤦

And yes, I'm a big bloke 110kg

I think I get the message and it is gratefully received x

[PMRpro Ambassador in reply to Paulx222]

Experience!!! And frankly - serves you right!!!!!!!! Eejit ...

[Paulx222 in reply to PMRpro]

I'll take that 😂😘

Have a lovely Christmas xx

And thanks x

[PMRpro Ambassador in reply to Paulx222]

Why we are here ...

[DogAgilityObsessed in reply to Paulx222]

PMRpro tells it like it is!

[Hidden in reply to Paulx222]

Hi Paul...It sounds as though you are trying to do too much too quickly...carrying a mattress up two flights of stairs is bad enough...without doing the Christmas shop at Lidl!

This happened to me, I couldn't figure out why I was having alternating good and bad days. There are so many things to be thinking about that sometimes you miss the blindingly obvious explanation.

I think men have a particular problem here. I am used to being strong and capable...if brute force was needed to get a job done then I was your man! It was part of my identity, as was my role of designated driver because I don't drink...then epilepsy struck me down a month before the PMR started and I had to surrender my licence, now my wife (who does drink) has to drive me everywhere.

I think that the change in our roles has a profound psychological impact on our self-esteem and identity as men. Asking for help with manual tasks does not come naturally to me but it is something that I am going to have to accept...

I hope you have a great Christmas...Nick

[Paulx222 in reply to Hidden]

Yes Nick,

I think taking it easy is going to have to be something I take more seriously.

A lot of the issue comes from the fact that I look relatively well and so people kind of expect me to be doing stuff.

I need to be a bit more assertive on that and just say no.

[Hidden in reply to Paulx222]

You are spot on there! I look like my usual self too...perhaps we should wear a badge..."Fragile...handle with care"...

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

You do have to learn to say ‘no’ and it’s not always easy…. but for you it’s a must….

[Wizards in reply to Paulx222]

It took me over a year to say no and ask for help.I'd say to my husband if I say "I'm done" that's me asking for help.

It took him over a year to catch on.

Very frustrating 1st year.

When No has never been in the vocabulary it's hard to say.

I agree, looking relatively normal is very hard knowing how you feel inside.

Learn to take care of yourself and be kind to yourself. Your in a new normal.

Merry Christmas

[Paulx222 in reply to Wizards]

Thank you and merry Christmas

[Flivoless in reply to Paulx222]

And be prepared to get even bigger. I went from a fit 105 kG to 115 in no time at all thanks to the prednisolone and it's a devil to shift it as you reduce. Try to keep the carbs down to as low as possible. Good luck

[sondya in reply to PMRpro]

Hi PMRpro. Back again after years. No GCA since (circa) 2017, just two PMR attacks - till a month ago. Saw GP who thought it was 'tendons' (correct) but NSAID prescribed was as ineffective as tits on a bull. So got a second opinion, new doc looked at my history and agreed it is PMR, saw that I responded well to pred and put me on 20mg. Within a day of taking first dose, all pain - neck and shoulders - gone. It's been three days and feeling so much better! Paulx222 - Colombo PMR? Wonder if that is the same Colombo Ceylon where I was born. Christmas Day in NZ and so wonderful to spend the day with family - without pain.

All the best wishes.

The pohutukawa - New Zealand Christmas tree

[PMRpro Ambassador in reply to sondya]

I thought it was the detective... imdb.com/title/tt1466074/

[Paulx222 in reply to PMRpro]

Correct!

[DorsetLady PMRGCAuk volunteer]

At 15mg -which is a more normal starting dose it can take a couple of weeks to get a good result… so would say hang in there. The time to think it isn’t enough is towards the end of next week.

The fact you started at 30mg maybe gave a false expectation…

So get through Christmas being realistic - provided it doesn’t get any worse and then re-evaluate -either coming back to us or contacting Doctor.

[Paulx222 in reply to DorsetLady]

Got it DL.

Sounds logical. I am supposed to stay on this until 6th of Jan before tapering down to 12.5mg

I will see how things go x

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

..and no more lifting and shifting 😳

[Paulx222 in reply to DorsetLady]

Understood x

[paulus65]

Hi Paul - I started at 25mgs with instruction from doctor to slowly taper as and when possible. Had a call with him after about 6 weeks and since then he's left me to it. Now on 1mgs (after nearly 6years). Been on this site most of the time and something I've noticed is that those with most input from the medical profession seem to have most problems with tapering.(flares etc)

My advice - try to control your own med and take life a bit easier than you used to.

[Paulx222 in reply to paulus65]

Thanks.....just starting out do still trying hard to get my head round everything.......all advice, thoughts gratefully received.

Thanks

[Potter100]

I was started on only 15mg & immediately saw results. Now every month my doctor reduces by 2.5mg & I have continued to be ok. I am currently on 10mg.

[Doraflora in reply to Potter100]

I haven’t been on here much lately, but this jumped out at me. Reducing by 2.5 mg a month?😮. A bit drastic is it not?

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

It's in the guideline from 15mg down 10mg... and for some it works,but not for all..

[Doraflora in reply to DorsetLady]

I forget. It seems so long (well, it is. Almost 4 years ago when I was in a similar position)

And now I’m on a very slow tapering regime. I'm vary warily dropping another 0.5 milligram down from 3,5 mg to 3.00 and keeping everything crossed for this third attempt

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

Good luck....😊

[Doraflora in reply to DorsetLady]

Thank you, DL. Your tapering plan, of course 😉

[Alebeau]

In the early stages of my PMR I too suffered morning stiffness until someone on this forum suggested splitting the dose to 1/2 in the morning and 1/2 at night.

I felt reborn after that and was pain free all day.

I think the prednidone was wearing off through the day taking it all at once.

Did not zffect my sleep at all.

Good luck.

[Paulx222 in reply to Alebeau]

Worth thinking about.

Going to give it another week and make some decisions then

Thanks for the advice & input.

Have a great Christmas!

[Alebeau in reply to Paulx222]

Thanks you as well 🎅

[sidra1968]

That is a fast taper, too fast in my opinion. Too big of a drop.

I am still figuring out this taper...but splitting the dose has worked for me because it was wearing off after 11 hours or so. I am on a "2 steps forward, 1 back" journey with the tapering and symptoms returning..but if that is what it takes for me, that is what it takes.

After 9 months I don't freak out (as much lol) anymore at the returning of symptoms/flares..so at least the mental part is better now. I just raise my dose for 5-7 days or so and then continue on again downward..VERY slowly. Lucky I have a GP who is letting me do this alone, the new rheumy isn't too keen on it, but I truly don't care at this point.

I overdo it often because I am "young" and feel like a fool standing there while my 73 year old in-laws do things for me in the yard..but I am learning to say "I can't, sorry".

And I have a personal working theory that the younger people here need more Pred..maybe a faster metabolism overall? I seemed to have noticed this on reading so many posts..and weight, also..makes sense to me. Keep us posted!

[Gimme in reply to sidra1968]

or because your muscle bulk is greater when you are younger maybe?

[Ventdunord]

Hi Paulx,

Exremely good advice on this forum from all contributors who probably have more collective experience than any practice full of GP's when it comes to dealing with PMR firsthand.

Like many (unfortunate) others on here I'm a longterm sufferer and withnessed first hand the 'magical' result of being in great pain to almost zero after 24 hours of starting on a heavy dosage. As all on here will advise you to do, take it easy even when you feel well and don't be tempted to overdo things, especially physically.

I had a recent flare up which did not even show up as abnormal on the standard CRP, ESR tests. For two weeks had great difficulty lifting my arms above my head in the mornings etc. so I (and my GP) did not know if it was PMR or Arthritis. I then doubled my daily dosage from 5 to 10 mgs split morning & evenings for the past two weeks and am almost pain free.

So, as also many on here will advise, this is a debilitating affliction, which some lucky suffers are able to shrug off within a couple of years and others are stuck with Pred for the duration.

So keep on here and heed advice from the real experts.

Best wishes to all for 2024.

[Paulx222 in reply to Ventdunord]

Thank you!

Merry Christmas!