tapering

[leslieliesel]

Does anyone know how to taper off of low does prednisone?? I have been taking 10mgs daily for 6 weeks...Thank You

[Crusee]

Hi leslieliesel

I too currently take 10 mg per day of prednisolone and am looking to reduce my dose over a space of time. This should not be done on your own volition it should come after at least discussing with your rheumy or GP.

I am currently housebound but what I was doing when I used to be able to leave the house I used to tweek my doses .That is on a day when i had an appointment some miles away or if we were going away for a few days ,on the days I needed a bit of extra oomph I used to take 3 tablets ( 15 mg) but then cut down to 1 tablet the following day .So in effect I never exceeded my weekly dose but just tweeked it when needed..Rheumy and GP were aware of this and agreed it was ok,to do it.

As for reducing on a permanent basis this has to be done very gradually by reducing to 9 mg per day for a while and then down to 8.If you reduce too much too quickly there are side effects .Your GP will give you guidance on how to do this safely and to the best effect.

Good luck,hope it goes well.

Crusee

XX

[leslieliesel in reply to Crusee]

Thank You Crusee...I just took 7.5 mgs this morning rather than the 10....I realize that prednisone makes life bearable ....But I am so afraid of Pred side effects...I am using it for my Rash which is all but gone...I also was upped Hydrox.. from 200 to 400.....I'll give it a go at 7.5 mgs....

leslieliesel

[Crusee in reply to leslieliesel]

Hi

So you on hydroxy too.I take both of these meds as RA is my main condition.I dont have Lupus,,I look on this site as a friend of mine has it and I want to understand more about Lupus to help support her.Hydroxy has been making my hair drop out and so I asked my rheumy if I could stop it.He said that altho I may think it doesnt do much for the condition, rheumy said if I stopped taking it then it would trigger flare ups so I have continued with it.

Alot of these drugs have some of the most awful side effects which can quite often be worse than the condition itself, but everyone reacts differently to them and what's great for one is like poison to another.

Glad youre rash has improved,and I hope your weaning off prednisolone is successful.By reading reports on the forum of others attempts to do the same thing have said it can take a long time to come off it completely,so dont get disheartened if the sme happens with you.

All the best.

Crusee

XX

[leslieliesel]

Thank You...I will take it slow...I have also read that Hydroxy can make hair fall out..or bleach it!! Not. Can even begin to guess why hydroxy would cause hair to bleach......I am rooting for the bleaching side effect...I want to keep(who doesn't) every bit of my baby fine thin-ish hair

xx

[Chapter in reply to leslieliesel]

Leslieliesel, I hope your day goes well with the drop to 7.5, but you may find you are feeling a bit rough. Taking it slow is tiny steps, not dropping 2.5 mgs in one big step. Your rash may flare again with too big a drop and then you will have to start back at 10. Weaning is a good plan, I found with every drop 1mg, there were a few rough days until body adjusts again, and then when you are feeling OK you drop another 1mg until you are done. I wish you a healthy day and good results getting off the pred.

[leslieliesel in reply to Chapter]

THANK You Chapter!! I chose 7.5 because my 5mg pill can be broken in half....I think I will add a bit more tomorrow...and I did have to take a nap this afternoon.. that hasn't happened in a while...

[whisperit]

Hello leslielisel,

As you know, your adrenals taper off their own production of cortisol when you take prednisolone as pred is a close analogue of cortisol. They don't kick back in again until you drop below about 8mg. The higher the pred dose and the longer you've been on it, the harder it is for your body to readjust to a normal cortisol level, and for your adrenals to kick in again.

So the longer you've been on a high dose, the slower the taper needs to be, especially once you hit single figures.

My rheumy's advice when I was reducing from 4 months on 20mg to 5mg was that a reduction of 5 mg each fortnight would be fine. It was brutal!

So from 10mg onwards, I went down by 1mg a fortnight to 8, then 0.5mg per fortnight. That's been bearable, and I'm now on 4mg.

Since you've been on a fairly low dose for a short time, you may tolerate a sharper taper.

Hope it goes well x

[leslieliesel in reply to whisperit]

Thank You for letting me know about your experience with tapering.....Today I took 7.5 mg..after being on 10mg daily for about 6 weeks+/-.....I did have to take a nap this afternoon...Are you staying at 4mg or do you plan /hope to get to 0 ? Were you having side effects taking it for four months??....I need to have surgery for an unrelated issue...my surgeon said he will not operate until I have been off for 2 weeks.......with or without needing my 2nd phase DIEP flap surgery, I want OFF of pednisone...even if it does make me feel good....so complicating

[Sara_A in reply to leslieliesel]

I've been on pred constantly for about 10years. I take 5 mg daily but increase to 15 or 20 for a flare. Each yr I think I'm going to try to get off the stuff I end up with a flare and have to increase! I probably increase about 3-4 times in a year.

I then take 20 for maybe 3 wks and then I reduce back down to 5. I just reduce to 15 one wk then 10 the following wk then back to 5 the wk after and I don't think I've ever had a problem really x

[leslieliesel in reply to Sara_A]

Are you having the usual side effects of prednisone?? Hopefully not since you you take "only" 5mg daily..unless a flare....

[Sara_A in reply to leslieliesel]

I have got the horrible accumulation of fat at the back of my neck which is the worst thing, I absolutely hate it and constantly try to cover it. I feel so ugly.

It is only a low maintenance dose but I've been on them non stop for about 10 yrs which still causes issues with the long term use.

[leslieliesel in reply to Sara_A]

Oh Dear, am I sorry...bad enough to have Lupus and HAVE to take medicine...then add feeling UGLY on top of it, because of the dreaded side effects...that is rough. I really feel for you xoxo

[whisperit in reply to leslieliesel]

My experience has been that reducing has not led to any flares of the auto-immune symptoms. Instead, it has caused daily episodes of nausea, sweating and shaking. My rheumy insists these are not due to the taper, but are probably secondary to a lack of sleep. However, the symptoms are pretty much exactly what you would expect if it *was* due to adrenal insufficiency, so who knows...?

Anyway, I have stuck on 4mg for a while in order to try and stabilise things. I plan to reduce again soon - using the 0.5mg a fortnight plan. x

[leslieliesel in reply to whisperit]

Interesting that your symptoms are from" lack of sleep"??? Sounds like with drawl symptoms to me......in any case, it is good that you didn't get a flare..yes? I have had drs tell me when I stopped taking medication, and I felt like I was hanging by my fingernails and had head whooshes, that the medicine I was stopping, was not addicting...so therefore no with drawls....this is why I do not like to take medication ..I will if I HAVE to..but I do not want to get trapped into taking prednisone........I hope you are successful with your plan...and yes, I do feel a bit shaky from going from 10mg to 7.5 mg xx

[leslieliesel in reply to whisperit]

I live in the US ,how many days is a fortnight???

[whisperit in reply to leslieliesel]

Fourteen days - two weeks! How funny that I didn't know you don't have that in the US! x

[leslieliesel in reply to whisperit]

Love it "Fortnight" !! ='s fourteen days

[Treetop33]

There's a good plan posted elsewhere in the forum which involves dropping a dose 1 day in 1 week, then two days the following week and so forth, until you are on the new dose. Then you go again.

I've tried dropping .5mg from 5mg not using the above method and it brought on a flare, including slight protein leaks from my kidneys. It was a complete lesson in taking things slow.

I'm now trying to come down from 7.5mg to 5mg, and then I'll see how that goes.

[leslieliesel in reply to Treetop33]

It is sound like tapering is not easy..AT ALL!! So you wee down to 5 mg daily? then because of flare, you had to go up to 7.5 mg? Geeeee..I do hope your flare is undercontrol...

[Treetop33 in reply to leslieliesel]

It isn't for me. It really depends on the person I think. Clearly with me the hydroxy hasn't fully set in yet or isn't sufficient to control my symptoms. That might not be the case for everyone. Still, most people think a slow reduction works best.

[ange726]

10 for a week, 7.5 for a week, 5 for a week then 2.5 for a week

[leslieliesel in reply to ange726]

That is exactly what my plan is/was...yet after reading others experiences with tapering, it may not be as easy as that...did you do this???

[ange726 in reply to leslieliesel]

Hi Leslie.

I was on 30mg of prednisone daily and it helped get rid of my pain for 5 weeks however my pain was starting to come back. I ended up being on them for 6 months in total so thought it would be hard to come off but I came down 5mg a week until I was at 10mg then did exactly how I told you. I had no side effects and felt fine and had no withdrawal symptoms. I have been diagnosed with lupus of the central nervous system which is quite rare. I have chronic pain down the right side of my body. The steroids just stopped working hence why I came off them (under the strict control of my dr). Good luck x

[Sara_A in reply to leslieliesel]

I'm pretty sure u will be fine as it's only been a 6 wk course, people who have asthma etc who have a course of steroids don't even wean down they just stop so I think going down to 7.5 one wk 5 the next then 2.5 the next should be ok?? And I think that's being cautious. Has the dr who put u on it said u need to taper off?

[leslieliesel in reply to Sara_A]

My Dr wants me to hold off...so I WILL pay attention to my symptoms....I just really want to get my( other issue) surgery done, and he won't do it while I have prednisone in my system......I will be careful..after all,I really do not want my Rheumy to firs me as her patient!!

Thanks Again Sara

[leslieliesel]

Thank You for the encouragement .... It is very difficult coping/dealing/living with chronic pain...I certainly understand you getting of prednisone...why add the side effects if it doesn't work for you...I do hope you will be able to find a different way to manage your pain .xx