I really have had enough!

[Janann25]

After a very difficult four year journey with PMR, I seemed to have settled down on 5mg and intended staying there for a LONG time. But, PMR has other ideas and I have developed a flare but genuinely don’t know the reason. I’ve had a very quiet week with no excessive exercise but I woke at about 2am with a lot of pain. It’s now coming up to 9am and it’s still there. I’m even more upset because it’s my birthday today and I’m being taken out by lovely friends for a meal this evening. I’ve tried paracetamol but this doesn’t help so, do I try to battle on or do I increase my Pred for a couple of days - yet again!! I HATE this illness…….

[SnazzyD]

Well that’s not on! Can you say a bit more about where the pain is and what it’s like?

[Janann25 in reply to SnazzyD]

Neck, across shoulders and down back. No problem in hips or legs. I feel quite “shaky” in myself but don’t have a temperature. Very weird, especially as I’ve not been particularly busy this week. It’s only been a couple of weeks since I had a similar “episode@“ so I’m not a happy bunny 😞

[Constance13]

Firstly - Happy birthday. 💐🍀I think you probably know the answer. Up the pred for a couple of days. None of us want to do this but PMR doesn't listen.

It's a difficult decision to know whether to go out or not this evening - see how you feel later and, if you go, be sensible. If you find your pains, etc are getting worse go home early. Rest for the following day.

Good luck! 🍀🍀

[Janann25 in reply to Constance13]

Thank you.

[Seacat30]

Oh no! That is so mean! There is still time for you to feel better before this evening. Fingers crossed 🤞 xxx

[PMRpro Ambassador]

That's much the same as happened to me although I don't think it was as sudden as that - I was at 4mg for the first time ever and I noticed my thighs were tired first snd then ached after a relatively short walk on the level around a lake while we were on holiday. Maybe it had been present for longer - can't remember.

For the purposes of today I would add 5mg to the dose for a few days and drop back to 6mg - it may be that 5mg is barely enough, there is a bit of left-over inflammation and the dripping tap has filled the bucket and is trying to overflow. Don't battle on today - worry about it tomorrow if the pred works to let you enjoy your birthday.

You may have had a quiet week - but is there anything you have done differently that might have also been there when it happened a few weeks ago? Even just sitting differently, lifting a shopping bag, eating something, especially sugary?

[Janann25 in reply to PMRpro]

Thanks for your advice and, yes, I think I already knew that extra Pred is necessary. It’s just that this also happened only two weeks ago and I really thought that the 5mg was going to be ok - but, I should have remembered that PMR is still in charge😡. I can’t think of anything different this last week but, as you say, it could be something which seemed insignificant but which triggered this. I’m extra annoyed though because I have an appointment for my booster Covid jab on Tuesday. Am I right in thinking I should postpone this?

[PMRpro Ambassador in reply to Janann25]

Why? I wouldn't. It is of course possible that this is the left-overs of 2 weeks ago , you were balanced on a very fine knife-edge and as SJ says - too much excitement

Happy birthday - and enjoy it. A glass of prosecco does me the world of good I find Before I was put on pred, the best I felt each day was after a glass of red with dinner!

[Janann25 in reply to PMRpro]

My late husband was convinced that our daily glass of red was what kept him going for a few more years! So, yes, I’ve continued having mine as well 🍷

[HeronNS in reply to Janann25]

I notice (more in the past than these days, we adapt ) that even a quiet coffee with a couple of friends would leave me exhausted when I was down to a low dose. I'd come home and fall asleep almost instantly. At the time PMR pain was well controlled so presumably this was just sluggish adrenals. This could account for your intermittent shakiness. It can take a very long time for the adrenals to pick up the required production of cortisol, so another reason to taper very slowly once you've got the flare managed. "It isn't slow if it works."

And Happy Birthday! No dancing on the table for you this year, though!

[SheffieldJane]

Happy birthday Janann25 🎈🎁 and it could be that. I don’t respond well to any expectations of me, even nice ones. The event itself seems fine, it is just the expectation, anticipation the fear of “ letting people down”. If you drink, a glass of something may help the tense pain. In my experience a “ bit more” Pred doesn’t seem to do much. I hope it is all so nice that you forget your fears entirely. I hope you aren’t getting sick with something acute.

[Janann25 in reply to SheffieldJane]

I definitely hope it’s nothing “acute” because I’m due to have my Covid booster jab on Tuesday ! But I won’t be having it if I still feel like this 😞

[SheffieldJane]

Try PMRPro’s solution, she’s usually right. Let us know how you get on.

[Janann25 in reply to SheffieldJane]

Will do.

[MrsNails]

Happy Birthday 🎂 Mine Too!!!I’ve been preparing for My Birthday for Two Days - as I’m going away until Tuesday & Meeting My Half Sister for the First Time, as well as my friends & fitting in another Dermatology Procedure! So l have a great deal on - l’m a long time PMR Patient & for me these next days are going to be busy, exciting & stressful in equal measure, so l’ve adjusted my Pred accordingly - l really don’t have a choice.

Rest today & enjoy your evening! I’m starting with a late lunch today at a favourite Hostelry - all good local food, superbly cooked! 🥂

Serious Low Carb from next Wednesday! 😉

[Longtimer in reply to MrsNails]

Happy birthday, I do enjoy the antics you get up to!!....enjoy them!....🤣

[Janann25 in reply to MrsNails]

And a very happy birthday to you 🎉 Enjoy your celebrations!

[Longtimer]

Happy birthday, try to enjoy it...when I went out with my family a couple of weeks ago for my birthday my son said...mum`s had enough I`m taking them home....OH has lived with my fatigued look so long it`s normal to him!....but I enjoyed what we did....and knew when it was time to give in....

[Janann25]

So pleased you enjoyed your birthday. I no longer have my husband so it’s a bit of a lonely day - so I’m really hoping my meal with friends can go ahead 🤞

[Longtimer in reply to Janann25]

Just prime them first that it's not one of your better days....It was lovely to have something enjoyable to think about for a change....and I still do!..😁

[cycli]

you'll be there. Worrying about it won't help and you can only do what you can. Sounds like you need to up dose temp. Have fun .

[Janann25]

I’ll definitely try!

[S4ndy]

Happy Birthday! I agree with all the other good advice here. Up your pred for a few days and see if it responds. I am on 5mg long term and have had to do this occasionally. My test is if no other painkiller works (paracetamol, ibuprofen or diclofenac are my armoury as agreed with rhemy) then I up the dose for a few days to see if this helps. I usually find that most of my flares are not PMR these days as the 5mg takes care of it but sometimes it's a double dose for me then after a few days back to 5mg. I might add that this is getting less and less but the osteoarthritis flares more.Hope you can enjoy your birthday activities xxx

[Janann25 in reply to S4ndy]

Thank you! Yes, I’m about to post an update for all you lovely people

[Longtimer]

Hope you were able to go out for your meal and not paid too high a price....healthwise...

[Janann25 in reply to Longtimer]

Just posted an update - I had a lovely evening.

[Hidden in reply to Janann25]

There you are. Glad to hear this.

[phebamom]

PMR 20 years, GCA ten years. Flares happen. I used to twist myself in knots trying to blame myself or figure what I did wrong to trigger a flare. The body does what the body does. We just have to roll with it, Yes, PMR sucks. GCA sucks. It irritates me when well meaning physicians and others dismiss PMR as a common illness of the elderly consisting of hip and shoulder pain, The condition is not that simple. The symptoms range all over our body, and are different with everyone. This article is one of the best to point out what PMR truly is, and the reason we are in so much pain:

jrheum.org/content/jrheum/4...

20 years in, after misdiagnosis, shaming, and a lot of grief and depression, I'm still here.. I have great physicians and am better than I have been in ten years, So hang in there . I am a rare case, My PMR was so badly misdiagnosed and for so long that it is doubtful it will ever go away. My oncologist tells me that I will have anemia of chronic disease for the rest of my life, But for most the illness does tend to burn itself out. Although relapses are common.

From my experience you need to find the dose of prednisone that gives you relief of symptoms, then slowly taper down from there to a dose you can live with . My rheumatologist says I will be on 5mg. per day for the rest of my life. I had achieved 5mg. with the help of Actemra. Now Actemra is not available as it is being used to treat Covid patients. I tell myself that this shall pass and try to stay positive.

[Janann25 in reply to phebamom]

Thank you for your reply. I’ve just read your profile and find it hard to believe that anyone could have gone through those things and still be able to cope with so much. You should feel proud that you have coped so well.

[phebamom in reply to Janann25]

I am pretty well at the end of my relationship with high dose prednisone. My stomach has been bleeding for the last 18 months. I was doing great at the dose of 5mg. stomach healing, pain under control. Then my Actemra was taken away. Doctor wants me to go up to 7.5 mg. but I am going to call him after next week and tell him I just can't do it. Stomach is a mess again. A cousin and my best friend have both told me I am the strongest person they know, It does not feel that way most days.

[Janann25 in reply to phebamom]

I’m so sorry to hear you have hit yet another problem. I really hope this can be sorted quickly.