2mg Pred a disaster :(

[suszannah]

Hello all looking for advice yet again.

I wrote a post about a month ago as I was having problems with 2mg Pred well things got pretty rough, gca and pmr were playing up, felt weak and now have 2 bald patches on my head (small white hairs making an appearance) I upped pred to 5mg then 10mg and settled at 15mg where I have been for 3 weeks and I really don't want to go down but I know I will have to .. spoke with rheumny specialist nurse who advised me to stay on 15mg for 4 weeks then 15/14mg 4 weeks 14/13 mg 4 weeks etc, I have 1 week left before I am due to reduce, would it hurt to stay on 15mg for an extra week or 2? Enjoying feeling like the old me starting to do some of the things I didn't have the energy for when I was on low dose... told gp and rheummy that 1mg per month is not good for me I can cope better on 1/2mg reduction but they drummed into me 1mg 'you have to get off them as soon as poss' well look where that got me ideally when I get down to 5mg which is going to take months I want to stay there for maintenance really can't face going through all that again .. any help always appreciated

Many thanks Susz

[PMRpro Ambassador]

You will get off them "as soon as possible" - but asap isn't going to conform to the desires of any doctor. You will get off the pred once the underlying autoimmune disorder that causes the inflammation has burned out and gone into remission. Not before.

No chance of another doctor who is realistic and treats the patient in front of them rather than a textbook?

[suszannah in reply to PMRpro]

Thank you would it be ok to stay on 15mg for an extra 2 weeks? my body was that low was thinking 5 or 6 weeks at 15mg instead of the 4 weeks suggested?

[DorsetLady PMRGCAuk volunteer in reply to suszannah]

TBH 2 weeks is nothing in the great scheme of things - if you think it would be beneficial then stay on 15mg.

[suszannah in reply to DorsetLady]

Thank you DorsetLady will do an extra 2 weeks I can't remember when I felt this normalish and as an added bonus it is helping so much with my ankle problem as well

[PMRpro Ambassador in reply to suszannah]

I agree with DL - 2 weeks on a dose to be sure you feel really better is not going to make much difference in the long run, except the inflammation is likely to be better controlled.

[suszannah in reply to PMRpro]

An extra 2 weeks it is then, as I had 3 rheummy appointments cancelled not been able to see consultant just phone call with the rheummy specialist nurse the gp I saw said he knew about pred obviously but not in depth so he wasn't really much of a help

[HeronNS]

Could you consider one of the slow taper plans? It might be easier on you than alternating the two doses? If you do the four day start finish version of '"dead slow nearly stop" that will achieve a 1 mg taper in four weeks. The six day version achieves same in six weeks. But it gives your body a chance to get used to the new dose over longer period of time, not having to readjust daily. The slow taper plans like this are in a pinned post on this page.

You should never feel worse at the end of a taper than you did at the beginning.

[suszannah in reply to HeronNS]

Thank you Heron NS will take a look and see which is the easiest... to be honest after feeling so ill I am scared to leave my happy place of 15mg the slower the better, will never try to get off them again just aim to get to 5mg and stay there as soon as I got lower than 5mg things just started to go wrong

[HeronNS in reply to suszannah]

I have to say after I "failed" zero I'm happy to be where I am now and count myself lucky that I'm able to be so low. I do think I metabolize pred well so it could be others might need a bit more for the same effect. And as you are, I gather, also in recovery from GCA it's even more important that you continue to control those symptoms. All the best. 🍀

[suszannah in reply to HeronNS]

Thank you was just under pressure to get off them I know know to do what body says rather than do the text book route.. appreciate your input

[Buckc12]

Susz, I think that there is definitely a quality of life issue to be considered. I am 82 years old and have been on prednisone for 6 years. Every time that I have gotten below 5 mg I have crashed and had to go up gain and start over. I am at 9mg now and the last time I only got to 7 before again crashing. The difference in the way I feel at 8-9mg is worth it to me to just stay there or take a vey long time trying to below 7 regardless of what it may be doing elsewhere in my body. I don’t have any of the obvious side effects and my sed rate is normal. . My doc says that he believes that as we age some of us develop a cortisol deficiency that requires supplement and I may be one. For what its worth.

[suszannah in reply to Buckc12]

Thank you for replying I totally agree with you spoke with gp yesterday and he has agreed to let me stay on 15mg for another 2 weeks (6 in all) pleased with that in a happy place at the moment then I can reduce by half mg per month will take ages but I don't want to feel that ill again and when I eventually get to 5mg I plan on staying there

[Amber1414]

I have always been told to reduce by 10% a month. You don't say how old your are. My doctor told me that at 63 he doesn't mind me being on 5 mg the rest of my life but I try to do less. 2 mg wasn't enough so I am back up to 5 but know I need more. I can barely walk up the stairs and get so exhausted I have to sit and rest!

Good luck, no 2 people have the same situation so it's tough to know.

[suszannah in reply to Amber1414]

66 here anything under 5mg and I am in trouble so when I get there probably next year sometime I will be staying there... enjoying feeling normal at 15mg for now

[diana1998]

When I got to 15mg from 30mg I could only drop half a month if that without flaring. I told the rheumie and he told me to go at my own pace and wrote letter to GP. He also gave me his version of a really slow taper. Sometimes I'm on a half drop for 2 months depending how I feel. GP regards me as long term steroid user and always renews my prescriptions. I have regular bloods done and they are always normal thanks to pred.

[suszannah in reply to diana1998]

At 15mg now again ... but will be reducing by 0.5 per month after my next 2 weeks all agreed yesterday with gp

[diana1998 in reply to suszannah]

👍

[granofthewest]

I was worried about having a flare when successfully getting down to 6mg from 20mg initially. I spoke to GP on phone, she was very pleased with progress and said to continue tapering off by1mg every 4 weeks, wouldn't consider .5 taper. Said if I got symptoms back then to go up to 10mg again. I decided to follow Dorset Lady's slower taper plan instead. Bought a pill cutter and now down to 4.5 mg. I intend to stay on this plan rather than risk a flare or even worse GCA. Best of luck on your journey.

[PMRpro Ambassador in reply to granofthewest]

It didn't occur to her that going at 1/2mg and NOT getting symptoms would mean far less pred than you having to return to 10mg?

[suszannah in reply to PMRpro]

Yes I am a little confused on the 0.5mg drop per month as in fact if I went on say 14.5 for a month I would really be losing 15mg? just can't seem to fathom this out

[suszannah in reply to granofthewest]

Glad it's working for you, my body just doesn't like 1mg drops so 0.5 it is

[diana1998 in reply to granofthewest]

I've always dropped by 0.5mg. Much easier and mor successful.

[suszannah in reply to diana1998]

Do you do that everyday fir the month? That is what I was doing until gp told me to do 1mg to get off them because of covid ... never again it was a disaster

[diana1998 in reply to suszannah]

Yes. I couldn't possibly drop 1mg without disaster.

[Rugger]

Hi Susz,

If you do the DSNS taper starting with 1 day new dose, 6 days old dose, it takes 52 days to get down to the 'new' dose. If you did 0.5mg at a time, twice, it would take 104 days to drop by 1mg! That really is Dead Slow, Nearly Stopping.....!

If you start 1 day new dose, 5 days old dose, it takes 38 days. 1 day new dose, 4 days old dose takes 26 days.

Take care.

[suszannah in reply to Rugger]

Thank you I have got to the stage I don't care how long it takes after my problems with 2mg I won't be going there again lol

[sassykitty]

I know many will disagree with me although it works for me. In 2007 I was prescribed prednisone for PMR. I kept getting worse mentally and was diagnosed with "steroid psychosis" and told I could not take ever again. I was put on Plaquenil 200 mg twice a day for many years. It worked for me and now the symptoms have gotten really bad again so I will be restarting again the Plaquenil again this week. Prayerfully it will work again.

[Skysey]

I agree with others, I would remain on that dose for an additional two weeks as it is making you feel better. I tapered to 9 mg with the addition of a steroid sparing drug. However, after a flare, I have increased to 10 mg which has helped. My rheumatologist said that I can increase up to 15mg if I need to.

Can I ask what the problem is with your ankle? I have recently experienced excruciating pains in my ankle and hip. I am having an x ray soon to check for osteoarthritis.

Glad you are feeling better.

[suszannah in reply to Skysey]

Hi yes on 15mg I feel like the old me but I know I can't stay on that dose forever ... yes I have arthritis, bone spurs, tendinitis and tenovenocitis in my right ankle mostly caused from constant sprains when I was younger, have been waiting for my next ankle injection since January but can't see me having it this year sadly but the higher dose of pred has made a big difference... hope they sort out your problem and it's not as complex as mine

[artfingers]

Another thing I have found, if I push my body too hard, it sends me into a flare (as in my mountain climbing, bike riding, running -silly me in the summer)... so also pay attention to other things going on in your life and in what you are doing physically. I'm at 5mg awaiting the results of my latest blood test and may adjust up a bit. I'm sticking at 5 in general, just pushed it a tad hard when I was vacationing in Maine. I'm glad you are feeling better.

[suszannah in reply to artfingers]

Thank you I do tend to get stressed easily but this time it was definitely the 2mg pred that did it was feeling rough under 5mg I should have in hindsight stopped then but pressure was put on me to drop, from now on I will take more responsibility for the dosages