Landmark Day??

[Bcol]

Tomorrow, after over four years, will be my first day of taking zero Pred. 😀😀It's the start of my 0.5mg taper to 0mg. Will it all go OK, who knows? Will I be cutting corners and rushing it? No chance. Does it matter if it takes longer than my usual five weeks? Definitely not.Big question is will me and my body clock know/remember that I don't have to get up for 02:00. After four plus years I think that is probably unlikely!!🤔

[Kendrew]

Wishing you a successful final taper. Fingers, toes...and eyes!! 😄 crossed.

🥳🥳🥳

[123-go]

Well done! No, it won’t matter if you drag out this last step to zero (my opinion): savour it! I did and now after being on 0mg for seven months have no ill effects unless lowish cortisol is counted which I doubt.

I don’t see why waking at 2am should be the norm for ever after and hope to hear that eventually you’ll regularly wake long after silly o’clock 😁.

[DorsetLady PMRGCAuk volunteer]

Fingers crossed as others say.. and definitely no rushing.…good luck.

[SheffieldJane]

I hope it goes perfectly for you , at your own pace!

[PMRpro Ambassador]

OOOOOOOHHHHH!!!!! All the very best - I know that is all I need to say to you!

[Beebo8]

best of luck to you and well done, keep on in there and be patient, you’ll get there

[Bedwell]

very comforting to hear! I’m still on 1.5 but trying 1.25 once a week for a few weeks! Onwards! Hopefully.

Went to see a physio a few days ago. “Not happy at all at your reducing. Think you should stay on steroids as they reduce any back pain you have! !! Sorry I said ! Am very very slowly going on down . She was writing to my gp!!!! Was quite upset.

[Bedwell in reply to Bedwell]

Maybe I’ve posted this already! Sorry if so! 86!!

[Bcol in reply to Bedwell]

Hi Bedwell, it makes such a change to read about someone who's medical staff are worried about a patient reducing their Pred. Generally we get the opposite. Question is, does the Pred actually help with the back pain, it never does when my back goes into grumpy mood. If it does then at that low dose I don't see any problem with staying on it. If if it doesn't then carry on downwards and your doc needs to try something different. Does Co-Codamol help that is always my go to for my OA. Take care.

[Bedwell in reply to Bcol]

Pred has never helped my

pain! Since that magic day 3 years ago when I could suddenly put my arms above my head! And still can!!!! Physio has given me good exercises which I have started to do several times a day. And yes.. painkillers do help. Zapain and gabapentin which I take at night and sometimes in the day. But I could do without the symptoms of pred… sweats and extreme fatigue.. I know I’m 86!!! Dizziness .. can’t be sure is pred. And adrenal function back pain?! When I first had pmr in 2017 the rheumy was desparate for me to get off pred asap and I actually was off in 6 months !!! Weird!

[Bedwell in reply to Bedwell]

My situation complicated by the fall 2 weeks ago. !!! Severe bruising on left hip which has been a bit swollen anyway since hip replacement years ago ! Taking homeopathic arnica and aconite.

Xrays of hip and other knee have come back ok.. but certainly have back and knee pain.. hoping exercises will help.. and cranial osteopath back locally end of the month. Always found her helpful.

[Bcol in reply to Bedwell]

You are having a rough time and hopefully the physio will help to get things under control. If the Pred is doing nothing to help but also giving you dizzy spells then I guess that is an even better reason for continuing to taper it downwards. If/when you do get off the Pred you could possibly try Naproxen which always worked very well for me. That and the Co-Codamol was pretty much the only thing that worked for my OA until I had a TKN and eventually medically retired from work. Weird is good word as what works for some can be a complete disaster for others.

[Bedwell in reply to Bcol]

Thanks. Legs feel like heavy lead this morning. ! Doing my exercises. Will be interesting to see what gps reaction to her info will be! Depends which gp reads it of course. Holiday time.

[PMRpro Ambassador in reply to Bedwell]

The extreme fatigue is more likely to be LACK of pred at this level, And personally, I'd far prefer to take a bit more pred than long term cocodamol/Zapain.

[Bedwell in reply to PMRpro]

👍👍

[Bedwell in reply to PMRpro]

Actually main pain is bruised hip from recent fall. Happened to be the hip that was a problem when replaced and I had an infection and had to go back into hospital. Always been a swelling from about 12 years ago !!! At least!( Would have to look it up. Brain fog! )

[Bedwell in reply to Bedwell]

And I seem to remember someone on this forum called themselves “bleary eyed. “ I wondered at the time I joined this forum if it was a pred symptom. Certainly mine!

[paintpots]

Good luck. I know how good it feels to get where you are. Don't rush it. I cut my last 0.5mg in half again and did it in 10 weeks. It's fiddly at such small doses but I didn't want any sort of flare.

[Bcol in reply to paintpots]

My present 1.0mg tablets are so small that cutting them in half is quite a challenge, so there is no chance of quarters. If I need to I'll just extend the taper time to whatever is necessary, I'm in no particular rush.

[Bedwell in reply to Bcol]

My pharmacist recommended me a cutter.. which to my surprise! Does cut those tiny 1 mg tablets. I also have some 2.5 tablets left and can cut those in half which I am starting to do. 6 days from 1 and a half … then 5 days etc

[Exflex]

I wouldn’t rush from 0.5mg to zero, instead I would do a prolonged step via 0.25mg. That’s what I did and fingers crossed it worked for me. 0.5mg and 0.25mg are tiny insignificant doses of prednisolone.

[DorsetLady PMRGCAuk volunteer in reply to Exflex]

0.5mg and 0.25mg are tiny insignificant doses of prednisolone.

Not insignificant if they work !😊

[Bcol in reply to Exflex]

No intention of rushing at all. I agree that both doses are insignificant in themselves and aren't going to do anyone any long term harm, but if they work for you then as DL has said they then become very significant. See my reply to "paintpots" re 0.25mg.

[Bedwell in reply to Exflex]

How did you do that please? The 1 mg tablets are so small anyway?

[Exflex in reply to Bedwell]

Some of the 1mg tablets have a split line, but some don’t. For those without I used a pill spitter and then further cut the 1/2 into quarters using a toe nail cutter. Maybe not a precise cut but near enough and averaged over two consecutive days.

[Miacaro45]

👍👌🤞

[Tiggy70]

Well done to get this far! I’m at 4 years and on 10mg. We are all so different🌸

[Bcol in reply to Tiggy70]

I think if it shows nothing else being part of this forum just proves that that there is no "one size fits all" set of health care for this/these diseases. The treatment has to/must be tailored around what works for each patient and not just a 100% reliance on what it might say at the beginning of a "NICE" set of recommendations. I've been very fortunate/lucky with excellent GP's, backed up by the excellent support from this forum.

[Harbel]

😁👍