Going off prednisone????

[yogabonnie]

I have tapered to .5mg every other day, and 1mg every other day. I have never gotten this low before and I feel like PMR might be gone. (I felt like that once before and ended back up to 5mg. not so long after that feeling) but this time my last sed rate was REALLY low..and I just FEEL differently. My question is, since I am going to go for it, how long should I stay at .5 before just letting go? this last little taper? Any thoughts? I have been on prednisone, starting at 20mg and tapering pretty successfully except for 2 flares when I was impatient, now for 5 years. Thanks everyone who has carried me so gently along on this adventure. I will NOT leave the group. But would love to give this a try. !!

[piglette]

have you tried dropping to .5mg every day?

[yogabonnie in reply to piglette]

I guess that is next. I will. I am as nervous as a cat! haha. thanks.

[piglette in reply to yogabonnie]

You could try for two days then back to 1mg then for three days back to 1mg etc.

[jinasc]

I would do nothing until 2023 is in and then wait for 1 week and try the drop............after all what is 4 weeks after 5 years - zilch.

Christmas and New Year..................who does not get a little stressed?

[yogabonnie]

OH> yes!! good thought. I have daughter coming from Sweden next week for a week and then babysitting grandson during Xmas break and then there is Xmas and YES> you are absolutely right!!!!!!! good thought. thanks.

[SnazzyD in reply to yogabonnie]

That made my eyebrow raise 🤨. Why rush?

I took a year to go from 1mg to zero.

[dancersize2 in reply to SnazzyD]

So did I. thought very slow better than risking a relapse.

[yogabonnie]

Interesting. I guess I just want to know. In truth of course if the prednisone isnt doing harm any longer..that is my main concern.. my poor old osteoporotic bones..... more time won't matter. ...

[Dewdrop456 in reply to yogabonnie]

I am so pleased to see your name again and to hear your good news. I do hope its true. I SHOULD stop here but I will just tell you that I thought ,after 6 years that the PMR had left me but I caught Covid again a few weeks ago and I flared up . I am still in pain now .I can't seem to get it back under control. I had got down to 1mg and it's very hard to go back up. I have tried a couple of days of 5mgs but its obviously going to take more so I'll just have to do a proper regimen. Anyway, obviously I completely agree with all the excellent advice that you have been given here ,as usual. Very best wishes.

[DorsetLady PMRGCAuk volunteer]

I’d get to 0.5mg every day initially -maybe increasing that dose slowly -so first week replacing one of the 1mg days by 0. 5mg - may same next week, see how that is -then try 2days following week and continue until every day at 0. 5mg.

Stay at that dose for as long as you feel you need to -3-4 weeks should be enough to really know all okay.

Then introduce one day at zero - for one week, or two if you’re a bit uncertain, then 2 days (not consecutive), then 3 days …..etc -you get the picture.

Thats what my 7 week taper does (or ultra long one for the faint hearted).

As we say many a time -at such low doses 0.5mg really does make a big difference -so slowly does it..and good luck

healthunlocked.com/pmrgcauk...

[yogabonnie in reply to DorsetLady]

Thank you DorsetLady. sounds like a perfect plan. And you have been years without, yes? no recurrence? I was worried mine might reoccur before I quit prednisone. haha. how come it is reOccur and recurrence and not reoccurrence or recur. ? oh the wonders of language. Or am I wrong!? ha. maybe I will just say come back!

[DorsetLady PMRGCAuk volunteer in reply to yogabonnie]

Me-been in remission from GCA since September 2016-don’t say it’s gone completely (but hope/think it probably has).

As I’ve had 3 joints replaced since then, guess the body has been under a fair amount of physical stress (although not mental which I think was precursor) -so if anything was going to resurrect the dragon -would have thought I would know by now.

“Look forward, not back” is mantra I’m following -and fingers crossed - of course😊

Hope you can join me soon ….

[PMRpro Ambassador]

Yes, .5mg everyday first and then I'd drop a day now and again so zero as the new dose and absolutely no rush ...

And not before 2023!!! Your programme for the next few weeks makes me feel tired!!!

[yogabonnie]

Thanks PMRpro I was awaiting your response!

[PMRpro Ambassador in reply to yogabonnie]

It is always likely to be very similar to DL's!!!

[HeronNS]

My (ultimately unsuccessful) taper to 0 was done using dead slow method, no alternating days. My final taper was using 0 as my new dose, and .5 as my old dose. Every step of that final year of taper - from 2 mg - I'd taken twice as long as the standard, so three months to do each .5 mg taper. Took a whole year. So the final step to 0 took three months of dead slow version from .5 mg. I do not think you can ever be too slow but as you already know it is much too easy to be too fast! Good Luck! 🍀

[Bachblues in reply to HeronNS]

very impressive!

[HeronNS in reply to Bachblues]

Well it would have been more impressive if PMR had actually left the building!

[Grammy80]

Good for you!!! You have received great input, I offer my congratulations. Happy Holidays!💞

[SheffieldJane]

They’ve said it all yogabonnie. I would aim for Spring, these low levels will not hurt you. 🪴🌷🍀

[Ozziedays]

After so long cutting tablets in half, I introduced quarters, i.e., 0.25mg, into my final phase.

[yogabonnie in reply to Ozziedays]

I might do that. I like that idea. AFTER the holidays!!

[Telian]

You’ve had the advice - no rushing. You’re on such a low dose it will do you no harm. Well done you. 🌺

[Bobwif]

I read your post with interest as it almost exactly reflects my situation. I reduced to zero last January and for about four weeks I was ok. Then flared and went back to 5mg. Slowly slowly this year. I have been on 0.5 mg / day for five weeks now for the last week have tried alternating 0.5mg and zero daily. So far so good. I understand from this forum and family in NHS that you need to give the adrenals time to takeover from Pred. This may mean some pain/discomfort for some weeks before things improve. Best wishes. By the way, about two years ago, my GP prescribed 5 and 2.5 and 1 mg and basically said manage your own Pred and this prescription will give you enough purmutations for any dose you choose.

[PipandDots in reply to Bobwif]

Hi, I’m interested i why you flared do You know?

[yogabonnie in reply to PipandDots]

I flared a couple times. was around 5mg and had to go up to 10 and it took me a year to get back to 5mg. Another I was impatient. I was at 2.5mg and had to go back to 5 and went down in just a few months. Both times seemed to be because I went too fast. I would succeed in going down .5 and then be all excited and go down again within a month. too fast for me!

[Flivoless]

Don't spoil the ship for a ha’p’orth of pred.

[yogabonnie in reply to Flivoless]

well I LOVE that expression. I had never heard it before. I'm trying to think what we would say in the US... a stitch in time saves nine... or perhaps for the want of a nail...etc!!

[DorsetLady PMRGCAuk volunteer in reply to yogabonnie]

original is “Don't spoil the ship for a ha’p’orth of tar”.., but you’ve got the gist 😊

[PMRpro Ambassador in reply to DorsetLady]

And apparently, originally it wasn't ship but sheep!!!! Tar being used for skin conditions in sheep ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

well you learn something new every day……🤣😂

[Flivoless in reply to yogabonnie]

ha’p’orth is short for halfpenny worth.

[Charlie1boy]

very interesting to me that this time “you FEEL differently”

I was diagnosed with pmr in December 2014, and got to zero for the first time in October 2020. Stayed there for a month, but had to go back again to 5mg. Got to zero for the second time in May 2021, and this time stayed at zero for just over four months before again going back to 3mg. I was resigned to being on a small dose for life, but was tempted to try again for zero in October this year, and this time it really did feel different! Am still ok after a couple of months, but understand it may not be the end.

Excellent advice in my view to wait till after Xmas, but good luck when you do decide to go to zero. I spent most of the last two years at really low doses, and, after seven years and nine months, I think that helped.

Paddy

[PipandDots in reply to Charlie1boy]

Hi, thanks for your story. Do you know why you had o go back up? What triggered the flare?

[yogabonnie in reply to PipandDots]

I think one time it was the covid vaccine. but that could have been my imagination. have been trying for a few years to get down under 2.5 or so. I think if you look at my profile you can see my posts about Flaring. I guess I also have prednisone brain because I cannot remember exactly the situation! haha

[Charlie1boy in reply to PipandDots]

I didn’t let it go as far as a flare. I just felt I thought the original symptoms hadn’t completely gone away. Using the oft quoted analogy of the dripping tap, I sensed the bucket might be starting fill a bit, and I deemed it sensible to nip it in the bud. It worked.

My philosophy, after seven or so years of pmr, is to listen carefully to my own body.

Hope that explanation helps.

Paddy

[York54]

I stayed at 1 mg for a few months , didn’t try .5 mg. I stopped in January as Rheumy said he didn’t think a dose so low was making any difference!! ( we all know how wrong he is!!) Fingers crossed , I have been ok , I had blood tests to check my adrenal function first. After 6 years on pred,, I can’t believe I finally came off it. Prior to that I have taken pred for other autoimmune illnesses , so it has been in my life for about 20 years! Good luck , but agree wait until the new year . Happy holidays with your daughter xx🌺

[Blearyeyed]

As the others said.I'd stick as you are until after Christmas, as Jinasc advised , you've got a lot on with visits so trying taper with all that positive stress does not usually breed success.

Then go with the wise words of Dorset Lady.

Take your time on it and as the zero days start take it as you feel . Don't feel it has to be done by a certain month or date , it will reduce the pressure. Build up your strength , activity level and nutrient health to improve your recovery as you go through the last steps to zero slowly.

Good luck with it all , and do pace yourself with your visitors. The PMR may have gone but you are still in body recovery and can bring on all sorts of other aches , pains and Fatigue if you do too much during the Recovery Phase. It can take a year or more from being at zero to have really got your body back to its strongest , health level.

Pacing Yourself is a regime worth sticking to even when the PMR is well over the horizon .

[yogabonnie]

thank you for all the replies and help!! Blearyeyed last comment made me think about getting BACK my body.. seems like now I do not know what is OLD age and what is PMR or whatever??? aches and pains. I feel a bit, as we all must. cheated out of the ends of getting old and being plopped right into Old.!! but, that I should think is nothing compared to what others and many of you are going through and have gone through. just had to stick in a tiny WHINE! I have been VERY lucky throughout my PMR.. been able to teach gentle yoga without stopping and travel and get around easily. Prednisone is a truly wonderful drug. and I am grateful!! I am afraid however I have allowed myself, while saying I was saving "spoons" to become quite lazy! Between PMR and COVID isolating for the last couple years.. my couch lying has reached a point of perfection. I will be the only one on my death bed saying I should have worked more! haha. thanks again.

[York54 in reply to yogabonnie]

🤣🤣🤣🤣🤣🤣

[9lives]

well done you x that’s very uplifting to hear.

I am similar to you in that I started at 20mg. In 2016 and now down to 1mg and have been for last year.

I am also very nervous about reducing so I will watch you posts with interest.

I have no symptoms now so am thinking about reducing to 1/2 mg very slowly over the next month’s. All my reading were good last month so no inflammation showing. You’ve inspired me to have a try xx my Dr. Leave it up to me so

We will see. Good luck to you

Carole xx

[Bubble56]

Well done you! That is fantastic for you. I spoke to 2 people yesterday who , after 3 and a bit years, are free of Polymyalgia so I truly believe it is possible. Good luck on this difficult journey.

[pmr_nikola]

I am in the similar stage of taper. Have been on 0.5mg for several months before I decided to try skipping days with no pred. First I would only have one day off... then 2 days... Now I am taking 0.5mg every 4th day... Hope to be at ZERO by the end of the year, but like many said there is no rush. Just listen to your body.

[yogabonnie]

i love this!!!! Good luck sounds like a perfect plan keep me posted!

[Chiqui1950]

so very hopeful what you share!! your progress is an inspiration!! I look forward to hear the advice you get to a very important question, Best of luck in your final tapering off!!