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Prednisone
- Thread starter crohnie2
- Start date
Nyx
Moderator
I gained weight, but I needed to. I had lost 50lbs in about 2 months so really needed it back (I'm 5'10" and weighed 126lbs at that time....scrawny!). I also got 'moon face', facial hair, and was manic (some people go the other way and get depressed). I found the side effects to vary in their appearance...the weight gain and mania came first, the facial hair and moon face came after about 2 months on the drug.
Cindy
Cindy
I've lost a little weight from Crohn's, but not that much (maybe 5 lbs). I'm only supposed to take it for a month. I am completely exhausted, but at night I somehow feel like I have all this extra energy and then cannot sleep. Then I wake up the next morning and am exhausted.... and the cycle continues. Can't wait to be done taking this!
imisspopcorn
Punctuation Impaired
The medicine made me gain weight because it caused me to have food obsession.....That's the only way I can describe knowing where every last morsel of food was in the house.....I gained weight because I stuffed my face. It was directly related to the Prednisone. I wouldn't have gained the weight If I hadn't over eaten.....I also cleaned every nook and cranny three times over<<<<I really miss that part!
I started on Oct. and so far gain weight with I don't need., insomnia, a weird neck /between shoulderblades kinda pain like i need to hunch over hard to explain,depressed,fat face,very moody , heart feels like its racing, and harder to stay focused,and my eyes are more blurry. Gook Luck ! Hopefully you won't get any of this.
Yup, the insomnia is pretty bad! But you should find you get lots done while on the high dose! 
As IMP said, it gives you a HUGE appetite, but I expect you will only gain weight if you eat far too much! I found I was obsessed with food on the higher doses and put on some much needed weight, but this reduced over time.
The mania/wired feeling can be a bit scary so keep an eye on how you are feeling. It is normal to be quite jittery and anxious. When you taper down you can get depressed so keep an eye on this as well. Good luck!
As IMP said, it gives you a HUGE appetite, but I expect you will only gain weight if you eat far too much! I found I was obsessed with food on the higher doses and put on some much needed weight, but this reduced over time.
The mania/wired feeling can be a bit scary so keep an eye on how you are feeling. It is normal to be quite jittery and anxious. When you taper down you can get depressed so keep an eye on this as well. Good luck!
Ooh, and I got the hairy face but not the moon face!
I was one of the few that slept like a baby on Pred lol
Also one of the few that did NOT gain weight. I NEEDED to gain
weight, as I was 74 pounds at the time, but just didn't happen for me.
The drug itself did nothing good for me whatesoever.
But I got moon face a month or so into the Pred
and hair in weird places.
and horrific joint pain when weaning off IV Pred.
and Acne that last almost a year even after I was done with Pred
that nothing would get rid of.
Also one of the few that did NOT gain weight. I NEEDED to gain
weight, as I was 74 pounds at the time, but just didn't happen for me.
The drug itself did nothing good for me whatesoever.
But I got moon face a month or so into the Pred
and hair in weird places.
and horrific joint pain when weaning off IV Pred.
and Acne that last almost a year even after I was done with Pred
that nothing would get rid of.
I was also one of the lucky few that slept really well while on Pred. I did gain some much needed weight, but lost it all after I tapered off No moon face or random hair, although I did notice that I had to shave much more often!! I too had the joint pain, and it still continues since being off of it. The Acne was the worst part for me and I struggled with it for awhile after tapering off as well. I was put on Entocort after the Pred and it actually had a worse effect on me than the Pred did!
No moon face or random hair, although I did notice that I had to shave much more often!! I too had the joint pain, and it still continues since being off of it. The Acne was the worst part for me and I struggled with it for awhile after tapering off as well. I was put on Entocort after the Pred and it actually had a worse effect on me than the Pred did!Yup, I am down to a really low dose now but have been tapering the past 6 months. My skin was better than it had ever been for a while but now I'm spotty like a teenager and combined with the facial hair I feel super attractive
I've been on pred for 1 and a half months now and really don't need to gain weight!! I think I have picked up a bit of weight around my middle section, but not too badly. I am manic however and have terrible insomnia. Another side effect for me is terrible indigestion, oh and I deffo think I'm developing a moon face too. How wonderful this drug makes us look and feel
Moon face, fat stomach and I used to get bad hot flushes on my cheeks in the evenings.
Oooh and food cravings for everything that was never satisfied.
On the plus side, I went back to feeling completely normal and full of energy again, on full dose, anyway.
Oooh and food cravings for everything that was never satisfied.
On the plus side, I went back to feeling completely normal and full of energy again, on full dose, anyway.
I'm a bit like Lishy in that I didn't really gain weight until the very end of my tapers usually for some reason. And many times I wouldn't gain any weight at all. It is about NOT over eating. The most hungry it ever made me was the first time I was on it and I really needed to gain weight because I was almost down to 100 pounds. But other tapers -not too bad really. When you are feeling hungry and you know you shouldn't be - try to drink water instead (I know - RIGHT - tell you body that LOL!!). I do get hyper and have insomnia on it. But I *try* to use that to my advantage when I can.
Astra
Moderator
Hi Crohnie2!
Yup its a classy drug alright!
But I am soooooooooooooooo well! No pain wotsoeva!
Start tapering off next week, been on 40mg for 4 weeks, so on for another 6 weeks then see what consultant wants to do next, he's suggested Infliximab.
I needed to gain some weight, had lost 2 stone since Aug 09, but my cravings are reducing now, but got the belly, the chipmunk look! Hey it's cool to look like Alvin!
Insomnia is the worse, but I do lots of jobs when the kids are in bed and sleep in the mornings when theyve gone to school.
Besta luck
Joan xx
Yup its a classy drug alright!
But I am soooooooooooooooo well! No pain wotsoeva!
Start tapering off next week, been on 40mg for 4 weeks, so on for another 6 weeks then see what consultant wants to do next, he's suggested Infliximab.
I needed to gain some weight, had lost 2 stone since Aug 09, but my cravings are reducing now, but got the belly, the chipmunk look! Hey it's cool to look like Alvin!
Insomnia is the worse, but I do lots of jobs when the kids are in bed and sleep in the mornings when theyve gone to school.
Besta luck
Joan xx
Yup,, I've gotten them really bad recently and I HATE it!!! tea tree stuff seems to help a little bit.
Ah....back on prednisolone after managing to avoid it for the past 3 years or so, been mostly managed with predfoam enemas or supps, and since the azathioprine started around 8 years ago it reduced my prednisolone courses ALOT, but now i am bak on them, after failed enemas and a prednisolone blast...back on a month course to start then will taper down after i see the gastro which is another HUGE story...
Just waiting for the symptoms to creep back in, the moon face, my little bitty moustache...not cool for a lassie such as myself with pale skin...i would get absouloutley exhasuted come 3pm, would have myself a wee avo nap....not so good when i am working a 12hour shift in a busy ward but cant be helped....ooh and the few times i have been on prednisolone since being on azathioprine i notice my hair thins and falls out...blocked shower drains....my hair was doing so well too...started to fall out already and only had a 5 day blast of 40mg last week. started my long course today....so more to come..
never was conscious of any mood swings or manice episodes, but to be fair maybe i didnt realise! high pressure job where everyone can have mood swings so maybes i just fit in!
dreading the weight gain and fat face tho....was just losing the chirstmas pounds with my 4 week flare up diet...
Just waiting for the symptoms to creep back in, the moon face, my little bitty moustache...not cool for a lassie such as myself with pale skin...i would get absouloutley exhasuted come 3pm, would have myself a wee avo nap....not so good when i am working a 12hour shift in a busy ward but cant be helped....ooh and the few times i have been on prednisolone since being on azathioprine i notice my hair thins and falls out...blocked shower drains....my hair was doing so well too...started to fall out already and only had a 5 day blast of 40mg last week. started my long course today....so more to come..
never was conscious of any mood swings or manice episodes, but to be fair maybe i didnt realise! high pressure job where everyone can have mood swings so maybes i just fit in!
dreading the weight gain and fat face tho....was just losing the chirstmas pounds with my 4 week flare up diet...
ameslouise
Moderator
I was wondering where my new case of zits was coming from! I didn't realize this and the hiar loss were pred side effects!
I also got hairy face (and knuckles - pretty, right?) and RAGE at higher doses.
Luckily no weight gain, but I also became vegan and gave up all processed foods so I think that combatted the weight gain.
And I sleep like a baby!
Good luck to you - Amy
I also got hairy face (and knuckles - pretty, right?) and RAGE at higher doses.
Luckily no weight gain, but I also became vegan and gave up all processed foods so I think that combatted the weight gain.
And I sleep like a baby!
Good luck to you - Amy
Yeah, I've got pretty much all of that-pred turns me into an angry, furry, moon- and acne-faced eating machine...lol!
Well I spoke too my specialist today
I've been on 50mg a day and I'm about too start a new drug trial vedolizumab but I need too get down too 30mg - we thougt was 40mg but turns out it's actually a max of 30mg
prob is I gotta be on a steady dose of 30mg max for two weeks before I can start the trial
so I hav to taper prob is If I do I won't make the trial on time
so starting tomorrow morning I'm down too 30mg from 50mg
hopefully I don't get any weird side effect withdrawls
I've been on 50mg a day and I'm about too start a new drug trial vedolizumab but I need too get down too 30mg - we thougt was 40mg but turns out it's actually a max of 30mg
prob is I gotta be on a steady dose of 30mg max for two weeks before I can start the trial
so I hav to taper prob is If I do I won't make the trial on time
so starting tomorrow morning I'm down too 30mg from 50mg
hopefully I don't get any weird side effect withdrawls
Thanks everyone for the responses. It is SUCH a hard drug for me to tolerate--I now have a terrible cold and can barely breathe.....on top of sleepless nights, night sweats, extreme irritability and overall exhaustion. I guess at least I will want to eat less now that I cannot taste from my cold!
Stuff tastes terrible when it accidently hits your tongue.
I never got facial hair from it. I did retain water and got stretch marks on my legs and hips and also got what people seem to be calling "moon face" but I hate the term.
I was very irritable and became depressed a lot but I think that was mainly because I was in high school and elementary school when I was on it and people would make fun.
I never got facial hair from it.
I did retain water and got stretch marks on my legs and hips and also got what people seem to be calling "moon face" but I hate the term.I was very irritable and became depressed a lot but I think that was mainly because I was in high school and elementary school when I was on it and people would make fun.
Wel dropping from 50-30 pretty much over nite has a few downers
i've noticed alot more frequancy today compared too the other
an man the pimples they seem worse now on lower dose than before??!!
No tank tops/ singlet tops for me til they dissapear from
my shoulders lol
I've had less energy too - allthougj I havnt had much energy for months
could be due too the increaesed d or could jus be in my head I'll see if things settle in next few days
i've noticed alot more frequancy today compared too the other
an man the pimples they seem worse now on lower dose than before??!!
No tank tops/ singlet tops for me til they dissapear from
my shoulders lol
I've had less energy too - allthougj I havnt had much energy for months
could be due too the increaesed d or could jus be in my head I'll see if things settle in next few days
My experiences with prednisone have been both good and bad. Good because it seems to work!! Bad because it makes me irritable, I don't sleep well, my tummy swells so big some days I look at least 3 months prego, my face puffed a little (not as noticable to others as it is to me) and my face breaks out. But I guess it could be a lot worse and im am thankful that it helps with my CD symptoms!
I was like that too at first, but after 10+ years of on again/off again with pred, I get way more side effects alot faster. The worst I got was hairline fractures in my hip/pelvic bones from osteoporosis, very painful. So for anyone who takes pred or Entocort with any kind of regularity I always recommend DEXA scans. It can find the osteoporosis early and the docs can get you on meds to reverse it.C-Rohns said:
i was on 40 mg but tapering down. i didnt gain any weight, but i wasnt eatting much. i have alot of energy with pred. but if i over do it, im tried for days. also i'm one of the lucky ones who can still sleep at night. one bad thing is that i find i get moments whne i get really hot and edgy. it usually passes in 30 mins.
I was on 40 a day from the week of Christmas to about the end of January. I put on 10 pounds in that time. I then did a week at 30mg, and then down to 20mg a day. I am supposed to stay at 20 a day until I see my Dr. again at the end of March. So will probably be on the Pred for close to 6 months by the time I taper all the way off.
Blah, i'm taking 40mg myself, started last thursday. It has been helping a little so far with the stomach discomfort, and a lot with the urgency/D/vomitting. I have tons of energy, but seem to be really quick to overdo it! So far though, my main living area is cleaner than it's been in ages! LOL. So far no untoward side effects....knock on wood!
- Location
- USA
I agree! Thankfully I just got to start my taper today - from 20 to 15mg. Hooray! In one of my prednisone-induced mind-racing episodes last week I though up a jingle for pred (it goes to the tune of "Frosted Lucky Charms - They're Magically Delicious!"): ahem, ahem -jonr said:
"Oral Prednisone - It's Manically Pernicious!"
ameslouise
Moderator
Has anyone else had heartburn from taking prednisone???
It sent me to the ER a few months ago (I should put this in the "You know you need a new doc" thread - my doc was like, "Oh, yeah, that's probably from the prednisone." Thanks for the warning, doc!)
I was hoping it would die down as I taper, but I am still struggling. Wondering if anyone else has had this side effect.
It sent me to the ER a few months ago (I should put this in the "You know you need a new doc" thread - my doc was like, "Oh, yeah, that's probably from the prednisone." Thanks for the warning, doc!)
I was hoping it would die down as I taper, but I am still struggling. Wondering if anyone else has had this side effect.
Crohn's 35
Inactive Account
Yes!!!!!!! Terrible heartburn that I couldn't get rid of, and went on Nexium but the damage was done and ended up with a Hiatus Hernia, and I am on 40mg of Pred now and taking the nexium is a must... It is common with Prednisone. Try to get the "purple pill" Nexium it heals ulcers too.
ameslouise
Moderator
How often do you take the Nexium?Jettalady said:
I take Prilosec. I was taking 2x day, but cut it back to 1. I may have to go back up to 2.
I find that soy products are the WORST for my heartburn. It makes being a vegetarian kind of difficult....
Crohn's 35
Inactive Account
Sorry about the soy, I am not a vegetarian but not a big meat eater. I dont like the taste of soy so I don't know about that.
I take 1 pill a day. I was told by my pharmacist that it can cancel out some other vitamins so I was directed to take one a day... when my taper of Pred goes down I will stop the nexium because I eat small meals and there is an exercise to get rid of it. My HH has not bothered me, only once cause I forgot the nexium, now I dont forget.
I take 1 pill a day. I was told by my pharmacist that it can cancel out some other vitamins so I was directed to take one a day... when my taper of Pred goes down I will stop the nexium because I eat small meals and there is an exercise to get rid of it. My HH has not bothered me, only once cause I forgot the nexium, now I dont forget.
Yup,
I had just about every symptom mentioned and they came on pretty quick. Moon face, hairy face and mustache, acne on my face, neck and back (which I've never had in my life) a huge weight gain because of a huge appetite and I became psychotic. One minute I'd be really happy and the next minute I'd want to rip someone's face off. Also, I experienced extreme joint pain. Came to find out that Prednisone sucks the calcium from your body so it might be good to stock up on some supplements. What I would suggest is to let the people around you know everything you are potentially going to experience in advance. Then remind them of it occasionally. Prednisone is a very helpful drug in that is an amazing anti-inflammatory. You may experience energy you haven't had in a long time. Do as your doctor tells you when it's time to start coming off the drug. Prednisone, I believe, works by taking the place of your adrenal glands (best to look this up because I'm not an expert). It's extremely important to taper off the drug when it's time and not go off it all at once. The best of luck to you and keep us posted! Sharon J.
I had just about every symptom mentioned and they came on pretty quick. Moon face, hairy face and mustache, acne on my face, neck and back (which I've never had in my life) a huge weight gain because of a huge appetite and I became psychotic. One minute I'd be really happy and the next minute I'd want to rip someone's face off. Also, I experienced extreme joint pain. Came to find out that Prednisone sucks the calcium from your body so it might be good to stock up on some supplements. What I would suggest is to let the people around you know everything you are potentially going to experience in advance. Then remind them of it occasionally. Prednisone is a very helpful drug in that is an amazing anti-inflammatory. You may experience energy you haven't had in a long time. Do as your doctor tells you when it's time to start coming off the drug. Prednisone, I believe, works by taking the place of your adrenal glands (best to look this up because I'm not an expert). It's extremely important to taper off the drug when it's time and not go off it all at once. The best of luck to you and keep us posted! Sharon J.
Same experience as everyone else here--weight gain, sleeplessness, insatiable appetite, mood swings and all that fun stuff.
I've put on something like 10 pounds in 3 weeks, but I really needed too. I didn't really eat the last 2 months with this flare up. I've been very happy to get my appetite back.
And Sharon, I've read the same thing about replacing adrenal gland secretions so you can't just stop taking Prednisone without tapering or else your body will freak out.
-JD
I've put on something like 10 pounds in 3 weeks, but I really needed too. I didn't really eat the last 2 months with this flare up. I've been very happy to get my appetite back.
And Sharon, I've read the same thing about replacing adrenal gland secretions so you can't just stop taking Prednisone without tapering or else your body will freak out.
-JD
Hi C2,
I understand and share your wows but don't sweat it. We’re all in this thing together.
Three weeks ago I started on 40mg a day. Now I’m tapered down to 20mg. Hopefully when the course is through I’ll be able to go without it for a good long while.
I was really horrified when my doctor told me that I need to start taking Pred. The weight gain, disproportionate bloating, food cravings, mood swings, facial hair, etcetera…etcetera, but as Joan mentioned to me, "It's a small price you have to pay to feel well."
Hope you feel better soon.
I understand and share your wows but don't sweat it. We’re all in this thing together.
Three weeks ago I started on 40mg a day. Now I’m tapered down to 20mg. Hopefully when the course is through I’ll be able to go without it for a good long while.
I was really horrified when my doctor told me that I need to start taking Pred. The weight gain, disproportionate bloating, food cravings, mood swings, facial hair, etcetera…etcetera, but as Joan mentioned to me, "It's a small price you have to pay to feel well."
Hope you feel better soon.
Astra
Moderator
Hi Nicole
Hope you're feeling much better?
Sending you an update on my Pred situation, I was on 40mg for 4 weeks and tapered down 5mg every week, now I'm on 20mg this week, and all hell has broke loose!!!
I've got all my symptoms back! pain and D, gas and bloat etc
I'm supposed to go down to 15mg tomorrow, but after a phone call to GI, it has been decided to stay on 20mg until my clinic appt on 8th April, when we are going to discuss the Remicade
Wanted you to be aware, if you taper lower than 20mg, symptoms might come back
20mg is the magic number!
lots of love to you both
Joan xx
Hope you're feeling much better?
Sending you an update on my Pred situation, I was on 40mg for 4 weeks and tapered down 5mg every week, now I'm on 20mg this week, and all hell has broke loose!!!
I've got all my symptoms back! pain and D, gas and bloat etc
I'm supposed to go down to 15mg tomorrow, but after a phone call to GI, it has been decided to stay on 20mg until my clinic appt on 8th April, when we are going to discuss the Remicade
Wanted you to be aware, if you taper lower than 20mg, symptoms might come back
20mg is the magic number!
lots of love to you both
Joan xx
Hi Joan, Good to here from you.
Girl, then I'm sticking to 20mg because I still have not really gotten much relief since I started taking it. Quite a bit of pain on the left abdomen. A matter of fact, I contracted a kidney infection during the Pred treatment and my GP has given me something called Norfloxacin to treat that. The only thing, is that, when I'm all out of Pred, I may not even get an appointment with my GI. It's so stupid with the GI situation in this country. I know that the body shuts down if an abrupt discontinuation of Pred. I have to beg my GI to see me leading up to the end of my supply.
Real sorry to hear about your recurring symptoms. Hope you feel better, Joan.
Sending our love,
Girl, then I'm sticking to 20mg because I still have not really gotten much relief since I started taking it. Quite a bit of pain on the left abdomen. A matter of fact, I contracted a kidney infection during the Pred treatment and my GP has given me something called Norfloxacin to treat that. The only thing, is that, when I'm all out of Pred, I may not even get an appointment with my GI. It's so stupid with the GI situation in this country. I know that the body shuts down if an abrupt discontinuation of Pred. I have to beg my GI to see me leading up to the end of my supply.
Real sorry to hear about your recurring symptoms. Hope you feel better, Joan.
Sending our love,
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Anyone here have terrible night sweats with Pred?
I weighed myself last night before I went to bed (15 lbs gained in 3 weeks!) and then again after I woke up this morning and ate and went to the bathroom. Even after eating (thankfully I have been able to recently, the Pred is finally starting to do something) I still lost 5 lbs in 12 hours. No joke.
I keep waking up in the middle of the night to literally towel off. It's disgusting.
I feel like an old man. I'm 20 yrs old yet, my joints hurt. I have night sweats. My face is bright red and I can't control my body temp at all. I have horrible mood swings. Get depressed (which I never had had a problem with before; not in the suicidal way or anything I just get blue for no reason) then manic and overly happy.
Ugh. Not fun. Jealous of my peer group who get to just not think about their bodies like I do until at least they get out of college and they can drink and smoke themselves silly. Call me irresponsible and vain but I would rather be causing liver damage my way :roflanim:
-JD
I weighed myself last night before I went to bed (15 lbs gained in 3 weeks!) and then again after I woke up this morning and ate and went to the bathroom. Even after eating (thankfully I have been able to recently, the Pred is finally starting to do something) I still lost 5 lbs in 12 hours. No joke.
I keep waking up in the middle of the night to literally towel off. It's disgusting.
I feel like an old man. I'm 20 yrs old yet, my joints hurt. I have night sweats. My face is bright red and I can't control my body temp at all. I have horrible mood swings. Get depressed (which I never had had a problem with before; not in the suicidal way or anything I just get blue for no reason) then manic and overly happy.
Ugh. Not fun. Jealous of my peer group who get to just not think about their bodies like I do until at least they get out of college and they can drink and smoke themselves silly. Call me irresponsible and vain but I would rather be causing liver damage my way :roflanim:
-JD
Hello JD,
I can certainly relate to what you're going through. It is awful. The unfortunate truth is that these side effects are just stumbling blocks we all must contend with until we get some resolve to our condition.
I have sudden spurs of sweats, day and night... and no, it's not menopause:ylol2: But I tell you, this drug messes with you like it's nobody's business. I've been on Pred for 3 weeks and have already gained 13lbs. And let's not talk about my gorgeous new mustache....Ewww!
I have faith that you'll be feeling well again and be back in full swing of hanging with your peers and having fun.
Rest assured that you have our support. Stay encouraged and keep us posted.
I can certainly relate to what you're going through. It is awful. The unfortunate truth is that these side effects are just stumbling blocks we all must contend with until we get some resolve to our condition.
I have sudden spurs of sweats, day and night... and no, it's not menopause:ylol2: But I tell you, this drug messes with you like it's nobody's business. I've been on Pred for 3 weeks and have already gained 13lbs. And let's not talk about my gorgeous new mustache....Ewww!
I have faith that you'll be feeling well again and be back in full swing of hanging with your peers and having fun.
Rest assured that you have our support. Stay encouraged and keep us posted.
:roflanim:Nicole said:
I'm so sorry. But I truly can't do anything but laugh at this point because the side effects of this drug are seriously comical. Any other take on it and we all might get too depressed
I, on the other hand have benefitted from that unfortunate side effect. I'm kind of digging finally having a real 5 o'clock shadow (fully present at about 9:30 am :roflanim
.Hang in there.
-JD
Astra
Moderator
Ha Ha everybody on Pred
It' s EVIL
but
It's fab!
now I'm on 20mg all the horrible symptoms have gone - no wizzing, no sweats, no moods, no munchies, no insomnia, no jitters, in fact I've lost a bit of weight this week, only cos the D came back cos I went down to 15mg, so upped it back to 20mg, I'm ok now.
These horrible side effects only seem to occur at high doses and at the beginning.
I thought they'd never cease, but they have, so bear with it til you taper, then it plateaus, and stabilises.
Joan xx
It' s EVIL
but
It's fab!
now I'm on 20mg all the horrible symptoms have gone - no wizzing, no sweats, no moods, no munchies, no insomnia, no jitters, in fact I've lost a bit of weight this week, only cos the D came back cos I went down to 15mg, so upped it back to 20mg, I'm ok now.
These horrible side effects only seem to occur at high doses and at the beginning.
I thought they'd never cease, but they have, so bear with it til you taper, then it plateaus, and stabilises.
Joan xx
Are the returning side effects more common in people who aren't started on another drug during the course of preds. I ask because my GI has suggested that I switch from mesalasine to Azathioprine after the preds and the idea is to start aza when I reach 20mg of pred. Will having something to take over stop the associated problems with withdrawal?