Sentenced to prednisone.....forever!

[Pam]

Hi everyone,
I had posted a few weeks back about feeling exhausted and sick and having a lot of muscle pain...well, I found out what it was....PREDNISONE WITHDRAWAL!
My neph said that since I have been taking it for so long, it would probably be impossible for me to be ever completely off of pred. He tried to taper it, but I guess that didn't work. I got down to 1 mg, but I felt like a mouse after the cat has chewed on it for a couple of days.
Now, he has upped my dose and I am feeling a lot better. I was taking 6 mgs for immunosuppression, but he has it down to 4 mgs and that seems to have helped.
So, it seems I will never be free from it... It captures its victims and never lets them go. But at least I am feeling more like (myself?) again! LOL
Take care,
Pam

[JMan]

If it's done properly`I think it can be done, it really needs to take place over a long period, the for me best part of a year:)

Changes were made for me over a periods of 5 months, (a reduction every 5 months) going from , eventually reaching 1/2 tablets alternate days, (1 once day, 2 the next) then 1 tab a day, then 1 tab alternate days...

I've been pred clean for over 6 months and I feel great:) I did get the withdrawal symptoms, I think, moodyness, tiredness, a bit of aching, but once I got off them my body adjusted

My case is different tho, my transplant had more or less packed it, but there was still some risk of rejection if they were stopped. It never did.

[Cheryl in CT]

Hi, Pam -

The worst pain I have ever had in my life came from pred withdrawal! (and I've had 2 kids & have fractured my back - twice!)

I think I'm on pred forever, too - I take 5mg a day, even now, 6 1/2 years post transplant. My docs have never tried to wean me off the stuff since the reaction I had over 5 years ago. (Maybe they're just chicken? I honestly don't know...)

In any case, I'm not showing any "bad" side effects - yet, anyway. I guess we'll just have to wait & see how THAT goes...

Even tho I don't post much, I'm around here a lot... Just so you know, I think of you often, Pam!

all the best,
Cheryl

[Pam]

Thanks Cheryl! I think about you also and hope all is going well and you're taking care of yourself. We don't hear from you often enough!
I hope you don't have any problems with the pred....it's true-the pain is horrible and the exhaustion is overwhelming. I never thought I'd actually WANT to start taking Pred again! LOL One weekend I was dragging around the house and spent most of it in bed and that's so not like me.
The doctor did try and wean me off rather quickly-1 mg per week...I don't know why he did it so fast, but it didn't work!
Maybe we'll try another time, but for now, I won't try and upset the status quo.
Thanks for all your replies! Take care!
Pam

[Rik]

Hi Pam ...
like Cheryl I'm around lots but dont post as much ...
(Cheryl ... shame shame shame on you!! ... your posts are much needed here on KPG!!)
keep wanting to post ... but not sure I'm the best person to help with the medical and clinical aspects of kidney problems ... (although if anyone needs help in how to fall apart at the thought of a needle coming near them ... or how to ward off three dialysis nurses and hospital security with only a chair and a drip stand ... then I'm your man!!)
I'm not brilliant at taking meds myself ... its not the first time I've reached wednesday before realising that the last meds I took was saturday morning

I havent had any problems with any of my drugs until last summer when they started me on indapomide ... for my BP ...
alongside issues of my fistula stealing too much blood ... this drug caused me to have severe breathing difficulties and fainting spells ...
even me fainting head first into the very healthy chest of my new doc didnt suggest to her that I was having problems on it ... she suggested I was having panic attacks!! ...
I decided to take myself off of it and the problems stopped ... although I still have problems looking my Doc in the eye each time I see her!!

oh dear ... oh dear ... oh dear ...
Cheryl ...
I do hope that fracturing your back twice ... and having two children werent related!!!! ...
surely a less gymnastic approach would have been equally as productive!!
over here we have a saying of 'lie back and think of England' ...
(which if your Scottish ... can put quite a dampener on things apparently ... least ways thats what Lorna told me!!) ...
but in your case would also have been a lot less painful!!

[jenjen]

Rik: Are you sure that the fainting onto your doctor was real and not for any other reason, hmmmm??

As for Pred withdrawl, I'm currently in withdrawal now and the doc said it would take a year for me to come off. I'm on 4mg for 3 months, 3mg for 3 months, 2mg for 3 months then who knows after that?

[JMan]

Keith, coming straight off 2.5 mg is completely stupid. Having been through the process myself I can't imagine what your consultant was thinking..

My doc quite clearly explained to me that it had to be reduced over periods of 5 months. It's what 'is usually done' I'm glad I'm off the damn things now, my bones are thin enough as it is without beating them up even more. I've lost any sign of the old moonface and feel a lot better:)

[nicola]

Im just in the proceeds of slowly comming off pred, after 26yrs, the only prob i had with pred was my skin, got loads of skin tags, which dont look nice and my nurse at the GP's burns them off, nice the smell of burning flesh........!!

Anyway im 4.5 mths into my 2nd live donor txp and doing ok, but the new anti reject drugs are killing me, have had terrible shakes and diarrhoea for the last cpl of weeks, i know this is the side affect of them but at what point do you say hey how long should this be happening, im on 3mg tacrolimus and 500mg four times a day mycophenalate, tac keeps being reduced but for the 1st time the myco has been dropped to one tab twice a day, so hoping things will settle down, but they are checking for cmv infection as my white cell count badly low, they think poss that my uncle had picked up a bug and pass on to me, anyway been back clinic this morn after spending 5 hrs at a&e on sat, panic as cret jump the highest its been since txp, anyway this is the fun side of having the txp but i know once my 1st year is over i wont panic as much, like my last txp i never even thought about it till i went to clinic, take care pam and i hope all settles down

Nicky xx

[Sarah I]

Hi Pam,
I too am sentenced to pred. I have had SLE (Lupus) for 16 years (in remission now) and been on various doses, sometimes quite high with hampster face side effects. Docs tried to ween me off and like you the side effects of extreme tiredness and aches and pains meant that I am forever on a 'maintenance' dose. 2.5mg seems to keep me on an even keel.

Trouble with long term preds is that it thins your skin, have to be careful in the sun, so whats new!

Sarah I

[amanda in CA]

Rik, I'm going to get stern here and wag my finger at you . Hope that you aren't forgetting to take those anti-rejection meds from Saturday to Wednesday? Just think of all the little pricks that you had to deal with on haemo., that should re-focus you - you certainlly don't want to have to face that again do you?

[Aileen]

I'm a bit confused by this as I am cutting back on pred and have not expected, been advised of, nor suffered from any side effects at all. I'm 5 months post transplant (today, actually ) and started out with 20mg pred aka 4 tablets once daily. 6 weeks ago this was cut to 15mg. On Monday past it was further cut by 5mg to 10mg daily. According to some of the posts, this is helluva drastic! But I really haven't noticed anything! Just shows, yet again, how protocols differ. (I'm with Leicester transplant unit) I suppose I just wanted to highlight that not everybody has side effects, I'm lucky enough to be coping with half the original dose so far. Roll on being down to just the one little 5mg pill daily!

best to all
Aileen x

[Thumps]

Yeah, I started on 25mg a day 6 months ago and am now on 5, having stepped down to 20, 15 and 12.5, then 10 and 7.5. I'd like to get off it asap. Those of you who say you're getting long term withdrawal; how long have you been on it?

I was advised that assuming the tx is ok (which sadly it's not at the mo) I'd be able to step down 1mg at a time each month soon til it's at zero.

[Charlie]

Oh I started on 20mg post 14 march
then down to 15 then 12,5 and currently on 10 mg fo at least 2 month

but have suffered badly from oral thrush which lasted for 2.5 weeks (not the best dier )

Chris

[Pam]

Thumps, to answer your question, I've been on Pred for 32 years....but I don't think you have to be on it that long to experience really bad withdrawal symptoms.
It sounds like you guys are doing it right by taking it slowly....I'm hoping that my doctor will try again with me and hopefully can get me off this stuff!
Aileen, have you been taking the Pred for only 5 months? Perhaps your doctor is taking it away at a slow enough rate being that you have only been on it for 5 months....maybe your adrenal glands haven't been exposed long enough to cause symptoms....I was told that when Pred is taken away, the adrenal glands don't always do their job because all the time you've been taking pred, the glands have generally just been dormant-I guess they just get lazy. I hope you continue to have no symptoms and that you can get off the medication, but I'm sorry the tx is not doing so well....is it rejection or something that is wrong with the function? I hope everything turns around for you soon....
Take care,
Pam

[Aileen]

Hi Pam, yes, I've only been taking pred for 5 months so maybe that isn't long enough for a relatively quick 10mg cut (a month!) to have much, if any, effect. It's good because other meds are coming down now, or are getting cut out entirely and clinic visits are monthly. Which seems like a long gap between appointments, especially when you get a 'twinge' over the incision and you start thinking, woa, what was THAT??!!
Best to all, specially you Thumps, hope things improve for you PDQ

Aileen x