Hello to the friends that educated me about PMR.

[lisbonportugal]

My name is Alexandria,

After tapering last year, from 15mg down to 0 as I told everyone...On August 3 was my last day of Prednisone. About 2 weeks later I was in unbearable pain. On August 20, 2022 after all your beautiful notes you sent to me, I went back to 10mg to get out of the pain. I rested. I ate well. I loved my life for 7 days. I was pain free. It was suggested to me by the PMR community that after the inflammation is under control, I can then go back to 5mg.

This is where I am now, and after 2 days of 5mg, I am in unbearable pain again. I can barely walk. What shall I do now?

[piglette]

It seems you really need to taper down more slowly from 10mg. Perhaps go back to 10mg for a week to hit the PMR on the head and then start tapering again.

[lisbonportugal in reply to piglette]

Thank you Piglette for your advise. Do you think I need to go slowly tapering for another year? I thank you all for everything and anything you can offer. I like everyone else. Do not want to be on Prednisone. I’m scared. My doctor hardly says anything and does not communicate the info that is written on this site.

[HeronNS]

Piglette is quite right. You appear to need more than 5 mg now. PMR can vary in intensity so even if 5 mg was working for a time right now you may need more. I think you should taper, not drop down so quickly again. You might need 8, you might need 6, or you might need 9, but you won't know if you taper too quickly. Do take your time. If you end up in a yo-yo situation you'll end up taking more pred. And once PMR settles down you'll be able to taper further again. (Been there, done that!) Good Luck!

[lisbonportugal]

Thank you, not sure why after not having pain, the inflammation comes back with more fury than before? Maybe I shouldn’t ask why.

[PMRpro Ambassador in reply to lisbonportugal]

Part of it is the contrast between being pain-free and not. But it isn't unusual for it to be harder to get things under control again if you let things get out of control by stopping the pred and having a bad flare. I was only given pred for 6 weeks originally, 2 weeks each of 15, 10 and 5mg, the rheumy didn't think it was PMR and within 6 hours of missing the first 5mg I felt worse than before taking pred. I'd been fine for the 2 weeks on 5mg. But it was difficult to get the pain down again and I never got to 5mg again for several years. Then I had another flare, this time without changing the dose altough I'd had niggles for some weeks, and haven't got under 10mg since then, must be 6 or 7 years.

[lisbonportugal in reply to PMRpro]

Dear PMRPro Your replies are very appreciated although I had to look up a word you used! My Rheumatologist and Endocrinologist have not taught me anything about the way PMR behaves nor any clues to the trauma of steroids in the body. I am learning so much from everyone here. I have a question based on your last note to me and the comment "I'd have been fine for 2 weeks on 5mg." Does the steroid dictate the level of pain tolerated and consequently when you rise the dosage of Prednisone to the theoretical unnecessary amount, the body get used to that level, thus hard to go back?

Or does the increase in the amount of inflammation occur, so the lower does no longer works?

How is it that you never got under 10mg for 6 or 7 years.

[PMRpro Ambassador in reply to lisbonportugal]

If you have more inflammation you need more pred, I don't think that taking too much pred means you get used to it - but it isn't a good idea to stay on too much pred so the idea is to reduce the dose in small steps to the lowest dose that manages the pain. It does tend to get lower as time goes on.

I have a particular type of PMR my rheumy thinks - there seems to be a form that is difficult to control and lasts a long time. I was relatively young when it started and not diagnosed for 5 years, both things we notice makes it hard to reduce the dose later. We don't know why - it is just so.

[lisbonportugal in reply to PMRpro]

Dear PMRpro, It is wonderful to be able to talk to you! I never would have believed I would have this disease and be dealing with such complicated health and steroid issues. You and all the others responded are helping me to accept this disease of my body and tackle the problems associated with it. It seems to be a waiting game and one of calibration of the drug. All of us want to be off this drug, I can easily assume that. But we are all thankful for it's availability in order for us to function.

[PMRpro Ambassador in reply to lisbonportugal]

"You and all the others responded are helping me to accept this disease of my body and tackle the problems associated with it. It seems to be a waiting game and one of calibration of the drug."That is what we hope - and you have already learnt some of the important things!

[DorsetLady PMRGCAuk volunteer]

Sorry to say this, but you need to rethink how you manage your PMR. ….and you need to acknowledge it is a long term illness and not think along the lines of ..”Do you think I need to go slowly tapering for another year?”

You, nor anybody else can tell you how long your illness will last (could be another year, could be a lot longer) or how long you will need to to taper, but for sure it needs to be slowly….

As suggested by others go back to 10mg, get things really under control, and then reduce more slowly…the previous suggestion you could return to 5mg obviously didn’t work.

So 1mg every 4-8 weeks (as recommended the international guidelines), but only if you have no return of symptoms……

Unfortunately it seems that the more often you flare, the more difficult it is get symptoms back under control…..another very good reason to go slowly.

Better luck this time……

[RoomsonFire in reply to DorsetLady]

Tapering under 10 mg Prednisolone isn’t possible for me just now , 18 months since Diagnosis- The Monster is just under the Blanket 😂 If I walk too much or anything like it - up he rears ! Acceptance of the PMR and Steroid management is reluctant - The Weight gain , Sweating , Tiredness etc.. But could be worse ! Thanks for Support fellow Peeps in this Boat 🙏

[Nextoneplease in reply to RoomsonFire]

Oh how I identify with this! Including your “but could be worse”. I’m also eighteen months in and attempting a taper to 10.5mg x

[RoomsonFire in reply to Nextoneplease]

Well I felt really at Deaths door the Weeks prior to Diagnosis and starting Prednisolone 15 mg - I worried it was the Big C - This week has been worse than usual .. and I think Stress has caused a Spike ? The Central Heating Boiler threw a Leak , spoiling the Kitchen Worktops and it had to be replaced too - So Stress about the Cost and Mess and Workmen .. My Shoulders , Clavicle area which had been quiet relatively are agitated with spasms of Pain - Weird isn’t it - This Condition is worse in its longevity and contrary symptoms than I anticipated , and the Treatment issues too - Glad to chat and give Support on here 🤗 Take care Next one please - and avoid Triggers you identify as you go along 🙏 x

[Nextoneplease in reply to RoomsonFire]

Yes, I felt dreadful prior to diagnosis. My husband described it to a neighbour as being “as though she’s aged thirty years in a couple of weeks”!!! So I do appreciate the benefit of pred and the fact that it’s given me some life back 😊

I find tapering very stressful in itself, it makes me analyse every twinge and worry all the time about overdoing things. Have started now on a slow five week taper of 0.5mg and will extend it to seven weeks by repeating weeks if needed. Am hoping that sticking to the pattern will reduce the anxiety….

Good luck to you too RoomsonFire, it’s good to talk 😊xx

[cycli in reply to RoomsonFire]

totally identify with this 15 months in and at 15 mg with both PMR and GCA happy days.

[PMRpro Ambassador]

Go back to 10mg and taper slowly from there to find the dose you need. You must have really shot down the last few mg before if you need that much more.

You can't put a time on the taper - you are titrating the dose to find the dose you need each day to manage the new batch of inflammatory substance shed each early morning. This isn't a disorder where you take the pred to cure anything - the pred is a long term management strategy. The underlying autoimmune disorder that is the cause of PMR can last for years - 2 years is the likely minimum, but it can last much longer and there is no way of knowing in advance. Nothing you can do with alter how long it lasts, it may influence how much pred you need but won't get you off it altogether.

[MiloCollie]

All great advice from the others. It may not be what you want to hear but they have lived it and really do know. Go back to 10mg for at least a week then slowly taper. Good luck xx

[marionofnorwich]

I had to go back to 10mg from 4mg when I got Covid in April 2022 which caused a big disruption of my system and a flare too. I have had to gradually work my way down again and am now back to 4mg and waiting for a synathecen test next week to see what my adrenal glands are doing (or not). It just all takes a lot of patience and listening to your body, taking it steady. Hope you start to improve soon but don't rush