Members' experience of minimum prednisolone levels

[pwc51]

How do members determine what the lowest dose of pred they can get down to?

I have now had 3 reduction exercises. The first 2 were very slow reductions, probably getting to 5 / 2.5mg before I flared (whether the pred reduction was the cause of the flares is an open question). The latest I would class as a ‘crash reduction’ – 10mg to zero in 2 months – following fantastic results from RTX.

I have to say that sitting at zero I don’t feel entirely comfortable. I don’t think it is psychosomatic. I have been at zero for about 3 weeks so suspect all the pred is not out of the system yet, so am being patient! There are niggling symptoms and I certainly don’t feel as good as I did 2 months back although there is nothing solid I can put my finger on.

If I need some pred I would prefer now to work up to the minimum value rather than wait until there is something serious to treat and have to start on a big dose, with the subsequent reduction.

I would be interested in the experience of others in reaching equilibrium. I expect as many different answers as there are responders but there may be a common theme! Also, what level of ‘discomfort’ / symptoms is tolerated, if that makes sense?!

Thank you, Peter

[Pete]

Hi Peter,

I was on a long, slow taper from July 2012 - April 2013. I began tapering from 60 mg/day at the rate of 5 mg/ 2 weeks down to 20 mg/day. From there, it was 1 mg/2 weeks until I got to zero. I felt fine until mid-July ( about three months after reaching zero) when I started having roaming joint pain, joint stiffness, and my feet would burn for about 30 minutes after getting out of bed. I ascribed these symptoms to aging (I'm 67). They were actually the first symptoms of a flare that went untreated until September.

My goal during this taper was to get off pred altogether. My goal going forward is to find the minimum dose that keeps me asymptomatic.

Knowing what I know now, I'm following the same taper schedule down to 10 mg/day. From there, I think I'll do 1 mg/month reduction and pay close attention to odd symptoms. If/when they materialize, I'll go back up to the last dose and see how it goes.

good luck with your taper.

[Alysia]

Hi. I am trying to get down from 5mg to 4mg couple of months. Each time I have more coughing, joints pains, ears fluids and pains, more productions from nose and diarhea (because of my colon involvement). So it seems that 5mg is my dose :sad:

[rif]

My son seems to be stuck on 5mg daily dose which enables him to function along with Cellcept. His last Ritux infusion was just over two years ago which is the longest he has gone between flares so not going to 'rock the boat':smile1:

Rif

[Widthofacircle]

My son seems to be stuck on 5mg daily dose which enables him to function along with Cellcept. His last Ritux infusion was just over two years ago which is the longest he has gone between flares so not going to 'rock the boat':smile1:

Rif
Hi Rif
That is the same dose as me. I take 3,000 mg Cellcept and 5mg pred. This seems to keep me stable. I have been on this dose for 18 months now having gone through the horror story that began in 2009. What age is your bson and what symptoms did he have up to being diagnosed?
Brendan

[pberggren1]

Well Peter, maybe you are one of those that do better on a baby dose of pred like 10 or 5mg.

[DJS]

My wife dropped to zero in March of 2013, and then dropped that kidney rejection drug in August when her white count hit zero. She said she felt great with no drugs. Then in October she developed hip pain that the chiro couldn't fix so her primary doc put her on pred for about three weeks. She has been off that for about two weeks but her hip is bothering her now. I'm thinking that keeping her on a low dose of pred may not be a bad idea. I'll suggest that to her to discuss with her rheumie next week.

[drz]

I too have been at 5 mg pred daily for past two years and aza from 150-200 mg daily too. That was dosage my doctors recommended for long term maintenance for me. So it seems to be mostly working fine, with no big flares but minor increases in residual symptoms, especially when I get an infection or high level of stress.

[mishb]

I have been at 3mg for about 5 months now.
I really think that 5mg is a good number for me and a number that doesn't make me feel achey.

I am sticking with 3mg because going down to 2.5 or 2mg just bought too much pain to my knees and hands - but I only tried it for a week (that was enough).

At 3mg, I have niggling aches but they are tolerable. I have more nose bleeds, but they are also tolerable.
Sometimes, things just feel a little uncomfortable and then I take 4mg, which takes the edge off.

My rheumy said that I would never get below 3mg and would alternate between 3, 4 and 5 for the rest of my life........I think I am fine with these figures.


Peter, I hope you can manage to get to zero and stay there, without a flare :thumbsup:

[Dirty Don]

After my first relapse, 3mg of pred seems to be just fine for me. I think about moving it to 4 or 5 just to feel even better...hmmm, don't do that Dirty...LOL!

[pwc51]

Thank you all for your comments - so far I have managed three weeks of no pred ..... how long will it last?!

As Pete suggests it is 'easy' to keep thinking that a particular symptom is age related rather than WG - I was doing that at the start and keep falling into the 'trap' now! If this is WG what does aging feel like?!!!

[Pete]

If this is WG what does aging feel like?!!!

You don't look old enough to be worried about aging!! :)

[pwc51]

Sadly I will be 62 next Monday so it is catching up with me from time to time. I keep thinking I should be able to do the same things I did when I was 20 but somehow I can't and the WG just makes the frustration worse!!

[JeanMarie]

I'm currently going down 1mg every 2 mo--now at 8mg. My Rheumy agreed to wait until after the holidays for any further reduction. Last time around my blood work got a little funny when I hit 7mg, but I was asymptomatic, so we continued to taper. I got down to 4mg & started to show kidney involvement so they upped the pred. to 20 & started to make arrangements for RTX--The doc repeated the tests waiting for the RTX to come & the kidneys looked fine & still do--so I am back on this slow taper. I have other things wrong so we are trying to use as little RTX/CTX etc as possible & I hope I'll be able to get down to at least 5mg pred. Aren't we having fun:flapper:

[annekat]

It is interesting how such small reductions in pred can cause such changes in how we feel. I'd had pred before dx, in short-run tapers, but had no idea about this facet of long term use until I read it on the forum. My doc doesn't talk about any of this.... maybe he knows I read the forum, maybe he's reading it on the sly! Who knows. All I know is I'd be totally in the dark without this forum. I would like to get down to 5mg. and would probably be fine with that for awhile.

[Debbie C]

I've been at at 5 mg for a couple of years now and the dr. said I can start tapering to 0. but unlike most of you I am not taking any other drug to fall back on so I am still waiting. As much as I want to get off this stuff, I don't want to suffer the consequences of a flare.Still under to much stress to chance it.
Happy Birthday on Monday pwc51, you do look very good and 62 is not old. I remember when I was younger how 30 seemed old. Hope you stay feeling well and have many,many more. Good Luck with the pred.

[annekat]

Sadly I will be 62 next Monday so it is catching up with me from time to time. I keep thinking I should be able to do the same things I did when I was 20 but somehow I can't and the WG just makes the frustration worse!! Happy Birthday, pcw51! I am only about 9 months behind you, age wise. I think you look great, and there are still many things we can both do!

[Alysia]

Happy Birthday, peter :hug3:

may your birthday present will be ever-lasting med-free remision :)

[Pete]

Sadly I will be 62 next Monday so it is catching up with me from time to time. I keep thinking I should be able to do the same things I did when I was 20 but somehow I can't and the WG just makes the frustration worse!!

Happy birthday, Kid!!!