Woke up feeling sore!

[Mercat]

I’ve been diagnosed nearly 1 year next month and have been tapering from 15mgs with not much success, however I’ve managed to get to 9mgs using the flow method, I’ve been on 9mgs for 4 weeks and been ok , but last night I had an awful sleep pain in my upper arms and shoulders and couldn’t sleep comfortably 😟 today I’ve felt so sore and major fatigue , looking like death warmed up too! Not sure what I’m meant to do is this a flare? I did take 10mgs this morning but I’m still sore all day? Any ideas? I’ll call doctor tomorrow 🥺

[PMRpro Ambassador]

Judging by the time since the last reduction, my suspicion would be that the 9mg is marginally too low to manage all the inflammation each day and over the 4 weeks it has built up to a level that is now enough for you to feel.

What we usually suggest is to add 5mg to the dose you are at for a few days before going back to the last dose you were good at. Are you reducing by 1mg at a time or 1/2mg?

What do you mean by saying you have not had much success tapering? Have you flared before?

[Mercat in reply to PMRpro]

Thank you so much for your reply that’s a great help, I’ve been tapering for what seems months and months, the doc told me to go from 15 to 12.5 which I tried several times and only managed to get to day 5 before the pain became unbearable, so I’m been trying to reduce 1mg at a time for 4-6 weeks an had been ok on 10 so went to 9 , to be honest I feel like I’ve just been left to get on with it all myself 😟

[PMRpro Ambassador in reply to Mercat]

That is probably what we would have said to start with. The GPs know very little about the different reactions people have to tapering. It is like that you really should have been started at 20mg and 15mg was barely enough to deal with - so it took longer to clear out the inflammation enough to give you a bit of a buffer to get to a lower dose. If you had done it that way you would probably have got to 10mg sooner - but there are so many variables that it is impossible to say. It took me 4 years to reliably get below 10mg.

You do know that the pred cures nothing? It is a management strategy to give you a better quality of life by relieving the symptoms which are due to inflammation caused by an underlying autoimmune disorder. It almost always burns out and goes into remission and then you will get off pred but there is no way of knowing how long that will take. A lot of doctors tell patients it will all be over in 2 years - unfortunately that only applies to about a third of patients, the majority need longer than that but usually at a much lower dose. You start with more than you are likely to need and then taper to find the lowest effective dose.

Stick with us and we will get you there - even if your GP doesn't know how.

[Mercat in reply to PMRpro]

Thank you so much it really does help to know I’m not alone from the start I’ve very much felt I’ve been diagnosed and then told here’s some steroids get of them quickly and you’ll be fine!! All the info about PMR has been online and on here! Last contact I had with GP was March , I actually don’t even want to call tmrw because I know I’ll prob get a GP who doesn’t know me or even about PMR and will be told something completely different! I did read all info about steroids not curing just basically masking the pain/inflammation 🥺 I had hoped I would be one of the lucky ones who recovers quickly!! Tonight is the first night I’ve cried in pain since been on pred 🥺

[PMRpro Ambassador in reply to Mercat]

No - it isn't "masking", it is relieving the inflammation and that in itself is a good thing as the inflammation is causing damage to the tissues.

"then told here’s some steroids get of them quickly and you’ll be fine!!" - if only!!!!

[DorsetLady PMRGCAuk volunteer]

As PMRpro has advised add 5mg to current dose- this link explains more fully how to deal with a flare- and would suggest you drop back to 10mg rather than 9mg-

healthunlocked.com/pmrgcauk...

.. and in future reduce by only 0.5mg a time not 1mg….still using a slow taper.

You’ve had a difficult start … make it easier for yourself from now on by going even slower.

Unfortunately it happens all too often when doctors stick rigidly to the guidelines instead of using a bit of common sense and reacting to the patients individual needs.

[Mercat in reply to DorsetLady]

Thank you so much I’ve just read the link about “flares” makes a lot of sense and I’m of to take my pred now! I’ve tried calling GPs 15 times within last 20 mins constantly engaged tone , so I’ll just go with what’s recommended and hopefully by tmrw I’ll be feeling a lot better! I will drop down by 0.5mgs from now on 😊 thank you so much I honestly don’t know what I’d do without everyone’s help and info everyday is a learning day with PMR and just when you think you’ve got it under control it shows it’s ugly face again!😭

[Bridge31]

We have heard this story over and over. Sending hugs. You will get there. Xx

[Mercat]

update on my pain 😟

So I’ve been on 14mgs since Monday the pain has certainly improved but it’s not completely gone I’m still feeling achy and sore and the old feeling of sadness is creeping back to me! I’ve got a telephone consultation with a GP tomorrow morning 🥺 actually not holding out for much help a GP I’ve never seen and who is a locum prob not even in the GP practice!! My question is this .. my starting pred in dec last year was 15 and worked wonders will I be out back on 15 or higher this time? 🥺

Any advice would be gratefully appreciated I’ll like to be prepared for my call tmrw!!xx

[DorsetLady PMRGCAuk volunteer in reply to Mercat]

You can stay on14mg for up to weeks without impacting on your drop back down to 9mg [so you may need a bit longer to notice a real difference]- try and explain what we suggest when dealing with a flare to GP. Whether he will understand is another thing… and he may have other ideas…

Good luck

[Mercat in reply to DorsetLady]

Thank you for your reply much appreciated 🥰 wish me luck 🙄

[DorsetLady PMRGCAuk volunteer in reply to Mercat]

I do, and please let us know how it goes

[PMRpro Ambassador in reply to Mercat]

Don't diss locums or doctors who don't know you - sometimes they see what others haven't.

[Mercat]

Thank you so your reply 🥰

Just of the phone to the GP he was lovley!! He’s advised me to continue on 14mgs and hopefully by Monday/tues i should be but more stable, he’s prescribed me some Naproxen and Omeprazole to take along side the pred, and I’ve to call back mid week to discuss a tapering plan going forward.

[Mercat]

Hello me again… we’ll update on my pain 🥺

I’ve been on 14mgs for 9 days and I’m still sore , was told on Friday to wait till mond/tues - so eventually got docs appn this evening - only to get a GP who had to “google” what makes PMR flare 😭 I could have cried there and then!! He’s told me to go up to 15mgs and to review me in 3/4 weeks!!!? I’ve to get bloods done tmrw to check my inflammation levels which have always been low anyway even when I wasn’t on pred! I really hope I get some relief tmrw after taking 15mg but I’m worried I’m still going t be in pain,.. what do I do then? 😭

[DorsetLady PMRGCAuk volunteer in reply to Mercat]

Given the 15mg a couple of weeks -and if it’s no better then you need to contact GP and tell him so. And also say that 15mg isn’t always enough in some cases so does he think it be a good idea to try a higher dose -say 17.5mg or even 20mg. Make it sound like it’s his idea not yours.. often works 😊

[Mercat in reply to DorsetLady]

Thank you Dorest Lady 🥰

I had a better sleep last night and I’m hoping today is a good day! 😊 hopefully I’ll not need to go up further but I will do as you suggest 😁

Many thanks again x

[DorsetLady PMRGCAuk volunteer in reply to Mercat]

You’re welcome 🌸