Can anyone give me their experiences of weaning off PREDNISILONE please?
I initially started on 10mg approx 2 months ago and I have slowly managed to now come down (past two days) to 1.25mg. I am pleased as so far no swelling or pain like in the beginning has come back yet but I know it's early days yet. I just want to stop them as from tomorrow as this medication is making me slowly insane! It is fantastic for the pain but it is destroying me as a wife and mother as I am freaking over the tiniest thing. It is turning me nuts! My Husband wants me off them and then I get annoyed as I feel that he can't understand the pain I was in before prednisilone kicked in and I feel he is being selfish just wanting me off pred so that my moods improve! See what I mean - the tiniest thing starts me off!!!!!
I would love to hear from anyone who has managed to do this and what happened after being free of pred. I am pregnant and can't start on any medication until after the baby - im 32 weeks now.
HOPE TO HEAR FROM YOU!
I went off pred. 3 weeks ago (May 7) and I only went as low as 2mg before I stopped. I have been on it since September of 2003. The most I was ever on was 10 mg. I have had a little swelling and some minor pain but I can live with it. I am also on MTX and enbrel and Plaquinel. I feel great. I feel like I have more energy (less napping as well.).It's important to wean off Prednisone to allow your body to slowly start remaking it on its own. If you just stop cold turkey, your body will be shocked back into trying to make enough quickly and can cause a flare up for you in the meantime. Hope this helps answer your question.
~Meg
I can't believe that you were able to take prednisone and be pregnant at the same time. I'd of been a raving lunatic.
Try taking 1mg for several days and then stop the prednisone completely. Hopefully you will not have a flare-up of symptoms. If you do flare up again, maybe you could try taking a smaller amount of prednisone, say 5mg. At least you could talk it over with your doctor if it becomes necessary again. I'll only think good thoughts for you. No pain, no pain, no pain, no pain. Take care and good luck to you. Barbchelybel thanks for starting this topic because I was wondering the
same thing. I will have to get off pred eventually and it scares me
hehe, just because it makes me feel pretty good and im afraid of what I
will be like without it. so im interested in people's responses :)
*hugs to all*
Dear Chelybel...I hope that you are feeling better and prednisone free soon. Congratulations on the impending birth of your baby! Love and gentle hugs, Juliah I was on 5mg of pred while I was pregnant. I think I was pretty tolerable this pregnancy. I was happy, more outoing, and was just about in a good mood all the time. Me and hubby actually got along great. And I never did get sick, like my first pregnancy. Iam going to have to start weening off of pred soon, I think taking it for close to 2 years is finally catching up to me. I am weaning myself off prednisone too. I was on it years ago (for a muscle disease) when they didn't know much about the dosage versus the side effects like they know now. And, I had all the side effects for years. We are so lucky now, that the doctors are aware. I now live in a different area with a new Rheumy and have been diagnosed with RA. I am taking methotrexate and he prescribed 20 mg. of prednisone. Maybe because I took so much years ago, I immediately have some of the side effects again. I keep telling myself I will never go on it again but then I get so bad that I cannot walk and I give in. So I understand what all of you are talking about. And I am so sad that any of us have to take this medicine, but it does work so I guess we have to be grateful for the relief! I am now down to 12mg. and I was wondering how many days you waited in between before you lowered each dosage as you weaned off? Thanks to all of you for your information. And I am so happy for you Kirsten, that you are off prednisone and feeling good! Susan
Susan-Lee - In answer to your question I have been reducing my dosage by half say every 5 days. My Dr has told me know that I have been down to 1.25mg for a few days now that I should start taking it every other day - so today being my first free day - dreading it. To be honest the past two days all of the morning stiffness of hands, wrists and feet and ankles have returned but have disapeared by about midday and I am so much more mellow by husband thinks! He can breathe again now without me screaming he has breathed the wrong way!!!! I am sad that the pain has come back but for me I really have to juggle things at the moment as I had got so depressed and crying all day every day for no reason BUT pain free! Its really annoying! Hopefully when the baby is born I can be put onto something else which may work just as quickly as the pred did - fingers crossed. Went for my scan yesterday at 32 weeks - because they wanted to check all ok with growth of baby etc because on the Pred - we had a surprise as the baby is HUGE!!! He is above the top growth line on scan chart, has a load of hair and is practising his breathing alredady - which they seem to think may be because of me taking Pred has matured his lungs so he is ready to go im hoping!!! This is my third son to be and I can't wait now just to get him out!!!! Anyway - il keep checking my message and will reply to anyone with any questions that i can help with ! Thanks Chelybel for your message! How exciting to have another beautiful baby on the way! I will look forward to hearing all about him after his birth! Thanks for the information. I am so happy to hear that your doctor said every 5 days. That is what I am doing. So I feel comfortable with that fact. I don't want to go too fast but I cannot wait to come off this medicine. I know you said you get a little more stiff and have some pain, but at least it seems to get better midday. To be honest, I think I could put up with that if I could get off the Prednisone. To me there is something to be said for feeling like yourself again without all the side effects. But everyone has their own feeling on the subject. And what is right for one may not be right for another. Right? So take care and I will say a prayer that the next few days (and beyond!) off prednisone go well for you! Keep in touch! I don't recall seeing anyone mention this but one of the reasons to
wean off pred is that after awhile of being on it, your adrenal glands
stop producing cortisol. If you suddenly stop pred and have no
cortisol production....then a lot of other problems can occur aside
from a major flare. At the moment I'm not quite awake enough to
look up the reference but, when I wake up, I'll post a link to what can
happen. Thanks for your information, Wayney. I was always told to come off of it slowly...but I never knew that not doing so could be life threatening. I am now at 10 mg and cannot wait to be off of it. But, I will continue to do so at a slow pace. Thanks again...Susan welp, I am weening myself off my 5mg. I just started 2.5mg the other day. And well, I feel like CRAP!!!!!! Not much pain, but lots & lots & lots of stiffnes. But it might not be from weening,BUT the RAIN & DAMPNESS!!! It has been raining here all WEEK!!!!! I got one hand (right) all stiff & swelled fingers, and the left hand some swelled fingers but no stiffness or pain only when bumped
My new best-friend is the heating pad LOL
But look at it this way, I am NOT nothing like I was Saturday when I just up and decided not to take my pred...lol. This is much easier to cope with. Welp, thouht I would give ya'll a run down of how my weening is much better then the cold turkey... Hi everyone Just an update - third day todya of no PRED and to be honest all of the old fluey symtoms are back - been throwing up quite a lot since yesterday which i used to do before PRED and also one of my fingers has got all the old pain back so I should imagine probably tomorrow i won't be able to bend it for swelling and the otehr hand will follow too soon. Really feel upset about this all as was secretly hoping I was free from it - stupid really. The thought that I will be holding my new baby soon with not being able to do anything with these figners and hands is killing me, so I shall be trying my best to get injections into my wrists and fingers that my GP has told me about - think they are steroids but instead of taking a tablet which goes through me all - the injection just treats the ill part of me. I shall type again tomorrow and let you know the progress ! Take care Hello Everyone - Welp, no more weening. He kept me on my 5mg of pred, until I come back to him in august. Which is fine with me...since I'am the prednisone junkie....Hi everyone...I am new to the message
EDIted=I found out from my rheumy i may have gone off prednisone too quickly causing adreanal failure (low blood pressure), felt like I was dying. hm.. ok I have a question. My doctor told me that after i start my
enbrel I should get off pred. But I thought that taking a med like
enbrel would be sufficient to make me feel good enough so that I wont
need pred. My biggest fear is flaring, so what do you guys think are
the chances of me flaring bad after I get off pred even tho I am on
enbrel now? Sorry if its confusing! lol
Hmmmmm, tough one to answer. It normally takes a few weeks for Enbrel to kick in, but without the Pred? Its a case of wait and see, i suppose. Not very helpful i know!! Pred, as good as it is in dealing with RA, isnt a very nice drug though. So your better off without it in the long run. Make sure you wean youself off it though, give your body a chance to start producing its own Cortisone. As for weight gain, oh yeah, Preds good at that. Even after a Cortisone injection i used to blow up like a blimp. Something to do with water retention. Be nice if the Pharma companies could produce a drug with no side effects wouldnt it?!! HI all... I know about the weight gain... I was never small by any stretch of the imagination! but i have been on 5-15 mg of pred daily for the past 3 years. Friends told me to strap myself to the fridge... not had that problem tho... just not exercising... Well i joined weightwatchers a few years ago and actually LOST 70 pounds being on Pred!!!!!!! I have since gained most of it back, but it IS possible to lose Pred weight! Exercise does not need to be painful, try free weights and use them while sitting and watching tv. get stretch bands and again use them for stretching legs in from of tv etc... as you lose the weight, things change inside...gets better I kjnow i can dish it out, but i am BAD for not exercising.. but at least i have to mow my own grass! Hope this gives some hope to those with Pred weight.. it is possible! Hmmmmm, tough one to answer. It normally takes a few
weeks for Enbrel to kick in, but without the Pred? Its a case of wait
and see, i suppose. Not very helpful i know!! Pred, as good as it is in
dealing with RA, isnt a very nice drug though. So your better off
without it in the long run. Make sure you wean youself off it though,
give your body a chance to start producing its own Cortisone. As for weight gain, oh yeah, Preds good at that. Even after a
Cortisone injection i used to blow up like a blimp. Something to do
with water retention. Be nice if the Pharma companies could produce a drug with no side effects wouldnt it?!! Unicorn-thanks for the encouragement that you were able to loose weight on prednisone
Karen, I was wondering about water pills too. I bought some over the counter ones and was going to try those. Going for my Remicade treatment today and going to ask the doctor what he thinks.... Been off a good week now and feeling not too bad to be honest. The swelling and pain that came back initally seems to have eased slightly - there most at morning time. My personality seems to be getting more laid back again which my family are grateful for!!! Im so tired though its unbelievable - but that could be the pregnancy. Hope I can stick this out another 7 weeks until baby due then they will put me on something - don't know what and to be honest I don't think they know either!!! Catch you all soon Chelybel
hugs, wayney
http://www.uklupus.co.uk/bn8.html
This is the link to the info I found on stopping pred cold turkey.
I won't type the whole article...but I'll quote a bit of it.
"Patients taking steriods must be careful not to stop taking the drugs
suddenly. The function of the adrenal gland- a glad essiential
for life because it produces key hormones that regulate salt &
water metabolism, & its the source of adrenaline, "the fight or
flight" hormone - is inhibited by large doses of corticosteroids and
"turns off" when they are administered. The gland can recover,
but needs time. Therefore, stopping the drug suddenlyresults in
no cortisone in the body. THIS CAN BE LIFE THREATENING. [I added
the caps to emphasize this.] Most patients get very ill if they
mistakenly stop their steroid therapy abruptly. When one reduces
the prednisone dosage gradually, the adrenal gland gradually returns to
full function. Once full function returns, the drug can be
completely discontinued. Some individuals who have not been on
the drug very long (usually less than one month), or who have tapered
off with sufficient care that their adrenal gland is back to normal,
can come off the drug completely. If you want to stop taking
steroids, always seek your doctor's advice before stopping the drug."
This doesn't give specifics on what can happen, just that it can be
life threatening. One person I know went into adrenal crisis and became
weak, had memory problems, extremely low BP, irregular
heartbeats, and she basically thought she was dying.
I am not saying this to scare people. Just make you aware of the danger of stopping pred fast.
hugs, wayney
Wow wayney thanks for posting that because I knew that it wasnt a good
idea to stop pred suddenly but I didnt know it was life threatening.
Sheesh. Well ill make sure to talk to my doc about all that when its
time to wean off. Thanks again :) *hugs*
My wonderful rheumy...did not warn me of it either. There's a lot
she didn't warn me of. I guess she figured I was active in
searching things out and all that and knew about various treatments so
she figured I didn't need to be told. But, I kinda would have
liked to be the potentially life threatening things. She also
didn't seem to think that despite having three meds that interact by
working together to increase the risk of seizure, that it was no big
deal. I wasn't too comfy with that.
hugs, wayney
i know quite a few people who do decide themselves to wean off
of pred. i needed to make the decision myself since i knew i was
losing my insurance and i'd just fired my doc.
also one tip i've heard to manage the last few mgs....is once you get
down to say 2.5 or even 1 mg...then go to every other day and do that
for a bit then increase to every three days and so forth... i didn't
try that. i went from 10 mgs to 7.5 for a week or so and then 5,
then 2.5 until i finished my bottle.
aww jooniper that sucks, are you taking any other meds? I want to make
sure that when I start on my Enbrel that its working before I get off
pred. Man im so scared now, I dont want to feel like that *sigh* Hope
you feel better jooniper!
board and really have been learning alot by reading
posts. I am newly RA diagnosed. I am currently
taking mtx, remicade and pred. my doctor wants to
wean me off the pred. I have started (I am taking 15
mg/day.) It's been pretty hard because I don't feel as
good or have as much energy as I did when taking
20 mg. However, I have gained alot of weight so
trying to work on that. Has anywone gained weight
with pred? Is it easier to get rid of it after you stop
pred? would be interested in hearing other's
experiences. Thanks!!
Thanks for responding, Yea I plan on weaning myself off and all that.
But of course I will be crossing my fingers the whole time. Either way
if I do flare I might suggest to my rheumy about starting mtx again.
Injections tho! The pills made me sick as hell. We'll see, if i do
flare im sure you will read my complaints on here hehe. :)
Is anyone taking some type of water pill with Prednisone? Seems like if the drug causes fluid retention, we might be able to take something like a water pill to keep from ballooning up!!
Copyright ArthritisInsight.com