Down to 10 mg and experiencing this. Anyone else?

I am down to 10 from 20. Everyday it gets harder and harder for me to get out of bed. Not hurting yet, just exhausted for hours after getting up. Start feeling better in late afternoon. Does anyone else experience this or know why this happens? Thanks.

[PMRpro Ambassador]

You were never reducing relentlessly to zero - you were tapering to find the lowest dose that worked as well as the starting dose did. At a guess you have simply overshot the dose you were looking for and now the inflammation is starting to build up again. I don't know how fast you reduced - but you have gone a bit too far.

[Hidden in reply to PMRpro]

Im sorry, i dont understand when you say i was never relentlessly reducing to zero? I started at 20 and reduced 1 mg per month til now im at 10?

[PMRpro Ambassador in reply to Hidden]

Ok, forget that part of the sentence - you were tapering the dose to find the lowest dose that manages the symptoms. You have gone below that and the symptoms are emerging again It doesn't mean you won;t get lower - just not yet.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

You may have a plan which has you reducing by 1mg per month - but, and it’s a big but - you have to take account of other circumstances in you life and, as PMRpro says not go below the level you actually require on a day by day basis. You do that by adjusting your tapering according, and monitoring your symptoms, or preferably your lack of them.

As you started at 20mg and IF you could follow your plan then you probably assumed that in 20months you’d be down to zero. Unfortunately that is highly unlikely, PMR lasts a lot longer than that, despite what your doctor may have told you. - and whilst you have PMR you need the Pred.

So you are not relentless reducing to zero come what may - after the initial high dose you reduce slowly to find YOUR dose.

[Hidden in reply to DorsetLady]

Oh, ok. I understand now. So you are saying go back up until mornings (actually dont start feeling better for about 4-5 hours after i get up) are better? I know i seem ignorant and probably am. Just have been doing as my doctor said until i stumbled on this forum. Thank you so much.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hi again,

Just read your post of a month ago on another forum when you say you were on 15mg, is that correct? If so, have you gone from 15mg to 10mg in that short time? If so, no wonder you are feeling rotten.

Don't worry about not understanding your tapering plan or illness, many of us don’t at the beginning - this might help -

healthunlocked.com/pmrgcauk...

By the way, are you a farmer? Love the name.

[Hidden in reply to DorsetLady]

5 weeks ago i had sudden excruciating pain in my left hip. The MRI showed a stress fracture and bleeding in the bone marrow. My ortho got me in a panic. He said its probably been caused by prednisone. You need to get off that stuff. So im on crutches for a month then go back to see if edema and bleeding has stopped so i can have hip replacement. I dropped at that point from 15 to 12 1/2 for a month then to 10. He had me so scared. But now my plan is 1 mg a mo. Going back to ortho next Tues. These doctors have me in a quandry. I have found you have to be your own best advocate.

No, not a farmer. My husband and i decided to try gardening tpmatied, peppers, squash in haybales this summer. Im in charge of haybale #2! Crazy huh?

[PMRpro Ambassador in reply to Hidden]

Are you on any other medication? A bisphosphonate for "bone protection" for example?

It is all very well your ortho getting you totally off pred - but the PMR will return in all its glory and mobilising post-hip op will be very difficult. Good surgeons will accept you being on a dose of up to 10mg when they operate. And you will find it difficult to reduce very fast to zero - you have been on pred long enough for your adrenal function to be compromised. It will not return immediately and that will be the limiting factor.

[V1a4 in reply to Hidden]

Hey, you don't seem ignorant at all! We are all at some stage new to PMR and need help now and again. When I started on 20mg Pred, my GP advised reducing the dose in 4-8 week periods, so ever cautious I opted for the middle, 6 weeks and that worked for me. And, after advice from this group I've learned how to deal with flare ups which means I have to increase my dose - but that's fine and I can slowly reduce until I'm back to my 2mg level. Good luck!

[Meggsy]

Hello Haybale 2. Just wondering what time you take your pred. If it is after you get up, would it help to try taking it earlier, say 3 or 4am? I hope you find an answer soon. 🌻🌻

[Hidden in reply to Meggsy]

I take it as soon after i get up as i can. Thats about 9 am. Your idea is excellent. Im going to try that. Thanks!

[bunnymom in reply to Hidden]

Pred also takes a long time to kick in for me and mornings were a waste. I now take it between 230 and 4 am with several crackers and wake up feeling good. I get up to the bathroom anyway so no problem. Good luck.

[Meggsy in reply to Hidden]

I hope it works for you. 🌻

[Lanakay]

I, too, am at my best later in the day since I have had PMR. I try not to plan too much for mornings because that is when I am at my worst. It’s not pain. It’s just a terrible lack of “get up and go.” Fatigue, a bit of depression, discouragement at facing another day of PMR? Thankfully this awful feeling lifts once I get up and get my coffee and I am able to cope with another day and even enjoy it!

[Hidden in reply to Lanakay]

Yes exactly , but for me it lasts SO long. Its until mid afternoon. Thanks for your encouragement of not being the only "night bloomer!"

[Darcy2000]

I sound like you but what I did was go back to 15 and I now take 5 at night and 10 in the morning ..works really well ..pain much reduced

The goal now is go down 2 mgs a month til 10 then 1 mg a Month after that..slow but steady wins the race ..if I start to feel pain I will increase as needed just a milligram or so