Prednisone Taper and Side Effects

[Mattannika]

I am currently taking Prednisone and Apriso.
I just started tapering off of Prednisone. I started with 2 weeks at 40mg, now am half a week on 30mg, friday I am supposed to go down to 30mg then 20mg then 10mg and 5mg at the end.
I might be a bit naive, I assumed that the side effects that everyone talks about on Prednisone ( weight gain, moon face etc.)either appear in the first 2-3 weeks of taking the meds or you might not get them at all?

I have noticed on the 40mg that my cramps and all other Crohn's symptoms improved significantly. However, unlike I was told to expect to be alert and full of energy after taking the pills, I just crash. I got so tired, I literally had to take a nap. But now that that I had to go back to work, that's not possible anymore. At the same time as the Pred makes me sleepy and lightheaded all day, I can not sleep at night! I am exhausted and my eyes just want to shut, but I can't fall asleep! It's frustrating. I have little appetite, am tired, sometimes dizzy and feel my blood pressure must be really low as I am lightheaded. :ywow:Anyone else know what I am talking about? I assume this is the prednisone. Since I went down to 30mg, I've gotten more dizzy and lightheaded during the day, sleeplesness is still present but maybe not as bad. Do these side effects go away with lower dosage? Should I be expecting other side effects to appear? So far I figured it's all worth it, I can deal with it....but if this is just the beginning, I'd like to know? I really didn't expect there to be new ones once I taper off of the Prednisone....

 

[Rachel]

Hi Mattanika,

I am tapering off prednisone as well. I went from 40 mg and now down to 15 mg. I am extremely tired, my heart rate is crazy just sitting here, i constantly feel dizzy, and my chest feels tight sometimes. I hate this feeling. But I'm glad that I am not the only one feeling it.

 

[Mr. Blue]

To my understanding, the side effects you mentioned at first, such as weight gain and moon face, are common reactions to Prednisone. In my experience, I gained a slow, steady amount of weight during my steroid usage and developed a noticeable moon face over a month and a half into the treatment, though I suspect it would have occurred faster if I hadn't started the treatment after losing a lot of weight.

Prednisone is a very powerful drug, which is apparent in how quickly and effectively it improves symptoms. Also consequent of its potency are its nasty side effects. Steroids commonly interfere with sleep, and I know I've maintained some awful sleeping habits while on the drug. I imagine that your extreme tiredness is a result of your sleep, or lack thereof.

Because Prednisone is often responsible for artificially-high energy levels, it makes sense to me that, in lowering your dosage, your energy level dipped. As long as it continues to interfere with your sleep, I don't see any way to improve the fatigue, unfortunately.

Prednisone almost always increases appetite, so I'm surprised to see you've little appetite. I would hazard a guess that your lack of appetite is a result of Crohn's, though, and as your Crohn's symptoms improve, your appetite will, as well.

Going forward, as you reduce your dosage, you shouldn't anticipate new symptoms, though I would wait a couple weeks before I'd decide whether or not I'm gaining weight or developing acne. Do keep an eye, however, on your Crohn's symptoms. If they start to return as you taper off the pred, you're still contending with a flareup and should talk to your doctor.

I'm no expert, in fact almost all of the above is a result of personal experience, and I'd invite anyone reading this to correct me if I've misspoken.

 

[Thermo]

These sound like normal side effects, make sure to check with your doctor if they worry you. Everyone is different and some don't have the same problems but expect the side effects to get worse as you taper. You added a high dosage of steroids and your body will need to adjust to each new level

 

[KMoose]

The Pred is giving me some weird side effects too. I'm on my second week @ 40mg, and it makes me literally ravenous, and never full, which anyone around me is actually grateful for since the Crohn's symptoms were causing me to disintegrate.

I also get light headed, but had a weird, hard to explain symptom, which I'm not even sure is a symptom? It seems when I take the pred. my heart rate becomes stronger? It doesn't increase or decrease significantly, but the strength of it makes me feel like I was just running a race and am in cool down mode. I feel weird trying to explain it, but I guess that's what it feels like.

Didn't know that it effects your sleep schedules - which explains a lot for me, thank you!

 

[Niklovely]

I'm tapering off pred, currently at 20mg and I've only experienced moon face, acne and weird sleep patterns as side effects, which all seem to be getting better as I taper down.

 

[Mattannika]

To my understanding, the side effects you mentioned at first, such as weight gain and moon face, are common reactions to Prednisone. In my experience, I gained a slow, steady amount of weight during my steroid usage and developed a noticeable moon face over a month and a half into the treatment, though I suspect it would have occurred faster if I hadn't started the treatment after losing a lot of weight.

Prednisone is a very powerful drug, which is apparent in how quickly and effectively it improves symptoms. Also consequent of its potency are its nasty side effects. Steroids commonly interfere with sleep, and I know I've maintained some awful sleeping habits while on the drug. I imagine that your extreme tiredness is a result of your sleep, or lack thereof.

Because Prednisone is often responsible for artificially-high energy levels, it makes sense to me that, in lowering your dosage, your energy level dipped. As long as it continues to interfere with your sleep, I don't see any way to improve the fatigue, unfortunately.

Prednisone almost always increases appetite, so I'm surprised to see you've little appetite. I would hazard a guess that your lack of appetite is a result of Crohn's, though, and as your Crohn's symptoms improve, your appetite will, as well.

Going forward, as you reduce your dosage, you shouldn't anticipate new symptoms, though I would wait a couple weeks before I'd decide whether or not I'm gaining weight or developing acne. Do keep an eye, however, on your Crohn's symptoms. If they start to return as you taper off the pred, you're still contending with a flareup and should talk to your doctor.

I'm no expert, in fact almost all of the above is a result of personal experience, and I'd invite anyone reading this to correct me if I've misspoken.

Thank you Mr.Blue. Seems like I had the opposite reaction to the Prednisone, since the day I started I never had high energy, instead I had/have my best hour of sleep right after taking it!...I have my next check up today and am curious to see if the inflammation has gone down or even disappeared...I will ask them lots of question now that I am learning so much much more with everyone's help here!

 

[Mattannika]

The Pred is giving me some weird side effects too. I'm on my second week @ 40mg, and it makes me literally ravenous, and never full, which anyone around me is actually grateful for since the Crohn's symptoms were causing me to disintegrate.

I also get light headed, but had a weird, hard to explain symptom, which I'm not even sure is a symptom? It seems when I take the pred. my heart rate becomes stronger? It doesn't increase or decrease significantly, but the strength of it makes me feel like I was just running a race and am in cool down mode. I feel weird trying to explain it, but I guess that's what it feels like.

Didn't know that it effects your sleep schedules - which explains a lot for me, thank you!

The sleeping problems started the day I started on Prednisone, that's the only thing I experienced or noticed right away and it sucks to be honest. I do know what you are talking about with the heart rate, I have these moements where I feel nervous all of a sudden and its difficult to calm down...but then it passes eventually. All the other side effects I either didn't connect to the Prednisone right away, or thought was due to the lack of sleep. Hope you will feel better soon too

 

[Mattannika]

I'm tapering off pred, currently at 20mg and I've only experienced moon face, acne and weird sleep patterns as side effects, which all seem to be getting better as I taper down.

Did you have those side effects right away or did they appear when you tapered off? I was hoping and thinking that the side effects that I currently have would get better as I taper down as well. So I am hoping

 

[hainman]

hi mattannika,i was on and off the preds for 3-4 years as it would help with the inflamation and my lack of appetite and weight loss but as i started to taper down the lower i got ie 5-10 mark my symptoms stated to kick in again and make me ill si would then go back on them then after a while try the tapering again,i never really got the tiredness of racing heart but did want to eat everything in sight,the downside eventually was i ended up with osteopenia due to the pred usage,

 

[Niklovely]

Did you have those side effects right away or did they appear when you tapered off? I was hoping and thinking that the side effects that I currently have would get better as I taper down as well. So I am hoping

The acne and moon face came about days after starting the pred. I started at 60mg. The weird sleep patterns are a little more difficult to pinpoint exactly when they came about because I was dealing with a flare up and just got released from the hospital before starting the pred, but I noticed my symptoms improving at 30mg.

 

[Mattannika]

As of today I am down to 20mg! I'll be curious to see how I feel in the next few days. I defintely noticed some changes from 40mg to 30mg. The last few days on the 30mg I got the worst heartburn!! It's aweful, but I also have been starting to sleep an hour or so more at night, which makes a big difference. Now just figuring out what to eat or not...started the SCD diet because for one thing it gave me some ideas on what to eat, and because the thought behind it makes sense, and then realized all the food they recommend to eat at the beginning is stuff that helps if you have D., not so much if you are C...now rethinking what would help in my case, since I never really had a problem with D., but have always been rather constipated, which started all my problems and ended in this whole flare...any suggestions are appreciated...

 

[StarGirrrrl]

When I was on Pred, my side effects certainly spiked upwards as I started to taper down. But once I was a week or two into the taper they went away.

I am not qualified to comment on actual symptoms because Pred didn't work for me.

 

[akduck]

I had to taper in 2 weeks from 20mg to off, in prep for surgery. When i hit 15, I went to 12.5 (used a pill splitter), for a few days, then 10mg, then 7.5, then 5, then 2.5 - it was really easy to do, didn't notice the side effects at all, but had them bad when I was dropping 5 mg at a time. Might work for you, too! Good luck with it.

 

[Thermo]

The last few days on the 30mg I got the worst heartburn!!

Steroids have been known to strip stomach lining, if you get too much of this I would recommend asking your doctor for a PPI like Nexium, you need to protect your stomaching lining and this is the number one thing doctors don't tell you about steroids.

 

[Mattannika]

By accident, I figured out that drinking everything ice cold did the trick, no heart burn since. Go figure, strange but it works. My doc did prescribe me something for the heartburn, wasn't nexium, but I actually haven't needed it, which is even better I think. Down to 20mg now and I actullay feel a bit more normal. Don't feel as numb physically or emotionally.

 

[Laura Dawn]

I, too, was tired and light headed on prednisone. I gained10 pounds in a short period of time. My symptoms did get better, but the side effects aren't worth it to me. the moodiness, no sleep....I was on it for 6 months before officially being DX. Now, I research all meds before taking them.

I hope you feel better.

 

[mcmelly]

I am currently taking Prednisone and Apriso.
I just started tapering off of Prednisone. I started with 2 weeks at 40mg, now am half a week on 30mg, friday I am supposed to go down to 30mg then 20mg then 10mg and 5mg at the end.
I might be a bit naive, I assumed that the side effects that everyone talks about on Prednisone ( weight gain, moon face etc.)either appear in the first 2-3 weeks of taking the meds or you might not get them at all?

I have noticed on the 40mg that my cramps and all other Crohn's symptoms improved significantly. However, unlike I was told to expect to be alert and full of energy after taking the pills, I just crash. I got so tired, I literally had to take a nap. But now that that I had to go back to work, that's not possible anymore. At the same time as the Pred makes me sleepy and lightheaded all day, I can not sleep at night! I am exhausted and my eyes just want to shut, but I can't fall asleep! It's frustrating. I have little appetite, am tired, sometimes dizzy and feel my blood pressure must be really low as I am lightheaded. :ywow:Anyone else know what I am talking about? I assume this is the prednisone. Since I went down to 30mg, I've gotten more dizzy and lightheaded during the day, sleeplesness is still present but maybe not as bad. Do these side effects go away with lower dosage? Should I be expecting other side effects to appear? So far I figured it's all worth it, I can deal with it....but if this is just the beginning, I'd like to know? I really didn't expect there to be new ones once I taper off of the Prednisone....

wondering the same thing ! I also get sever shakes that i cant control!

 

[Mattannika]

An update on where I am and a need to vent a bit...So since friday I am now down to 10mg a day. And unfortunately I don't feel so good anymore...well, Crohn's-symptom wise. Lost my brains yesterday, lol. Husband was not too happy about that and concerned. Washed my ipod and couldn't remeber if I took my medication. Oops! I am not happy, wondering and waiting to hear if the tapering might be a bit too fast. Waiting to hear back tomorrow from my GI, but waiting is tough when in pain. Hoping things will improve in the meanwhile though. I was so careful not to be too positive at the beginning but then when I started feeling better the last few weeks I guess I did get a bit excited, now I'm bummed. Had just let go of remembering those aweful pains all the time and here I am feeling them all over again...not quite as bad but there are sure there reminding me that this Crohn's thing (the diagnosis) is really there. Just feel a bit sad really, disappointed. Also started eating really beginning stuff from the SCD diet and frst thought maybe theres a food I ate taht I just can't handle, but I don't think that's it. Must be the prednisone. I know, "patience", I know I'll get there and it's really just a minor setback where the meds need to be adjusted, but still. Patience is a tough one...Thanks for letting me vent here...

 

[karj]

Its good to vent! Prednisolone is definitely just a quick fix i think. and it works for the first few times. for me this time taking it had no effect, so i am still on a tapering dose. but i have started remicade and so far doing very well. i think maybe you need a medication for long term remission as opposed to just a stop gap.

 

[Mattannika]

Karj, I am still so new to this. My diagnose was barely a month ago and while I have heard the names of many drugs here, I don't really know any of them yet. I am not a good pill-taker or really any sort of drugs taker, I hate drugs. And at this point really not ready to accept the fact that I might always need to be on drugs from now on. Everything is still sinking in....right now I am just dealing with the fact that it looks like I will be on prednisone longer than I hoped and adjustments to drug dosage etc. are just part of figuring out what works for me I guess.

 

[Scaryman]

Does anybody else have quite a bit acne on their face and chest etc? Dr. says it's a side effect of prednisone. Since I'm on high doses since June.

 

[kmole]

Does anybody else have quite a bit acne on their face and chest etc? Dr. says it's a side effect of prednisone. Since I'm on high doses since June.

Before taking prednisone I had fairly normal skin. Every time I take it my face gets oilier and I get pimples on my face, back, chest, and scalp. Tapering is the worst though. I've taken prednisone twice, the first time I had quite a bit of pimples and it took about 5 months for my skin to clear up. The last time I took it was recently and it gave me horrible cystic acne that I am still waiting to heal. I have read a lot about how prednisone messes with your hormones. I have heard acupuncture can help with hormonal imbalances and you could ask your doctor for tests to see how your hormone levels have been affected. I'm not sure what you can do while you are taking it however except make sure you don't mess with it too much because that can make it worse. Good luck!

 

[Scaryman]

Before taking prednisone I had fairly normal skin. Every time I take it my face gets oilier and I get pimples on my face, back, chest, and scalp. Tapering is the worst though. I've taken prednisone twice, the first time I had quite a bit of pimples and it took about 5 months for my skin to clear up. The last time I took it was recently and it gave me horrible cystic acne that I am still waiting to heal. I have read a lot about how prednisone messes with your hormones. I have heard acupuncture can help with hormonal imbalances and you could ask your doctor for tests to see how your hormone levels have been affected. I'm not sure what you can do while you are taking it however except make sure you don't mess with it too much because that can make it worse. Good luck!

Thanks, I will ask about it. But also just read MTX can cause dermatitis. Not sure if the two are related.

 

[Mattannika]

Its' been a while, but I thought its time for a new update. I am still on Prednisone!! Since working woth my Naturopath, (who herself has IBD, so I really trust that she knows qwhat she is talking about and that she understands what I am going through) I have been tapering down 1mg/week. When I went to down to 6mg my symptoms came back and my Naturopath put me back to 8mg to catch it before it got too bad again. So I had to taper back down and the second time around I successfully got to 6mg. Went on vacation and that trelaly helped my stress level etc. But back at home and a week later, 3 days into my 5mg milestone, here are my symptoms all over again, each day getting a bit stronger. Arghhh!!! I am so angry!! And in pain :-( I'm hitting a point where I am really realizing that this "Crohn's -thing" is a lot more enduring than I had ever been able to imagine. It is impossible to comprehend the impact that this diagnosis will have on each and every part of your life. All I want is for the pain to stop!! And figure out what I can eat...

 

[GirlwithChrons]

I was diagnosed with Crohn's about a year and a half ago after struggling a lot with it, i finally got on some medication that helped my symptoms by starting Prednisone. I was 18 and I was really happy i could go back to being normal again, but the medication brought a whole new list of problems that my doctor never mentioned would happen to me. He said i may get cramps and notice a little weight gain but it was very unlikely. I became really depressed, I had uncontrollable stomach pains that woke me up at night, i wasn't sleeping, i put on 10 kilograms, and i now have thick purple stretch marks all over my body. I'm finally cutting down the dosage on these meds now but i'm honestly wondering if the damage is done and i'll never go back to normal even when i'm off the steroids. I'm also wondering if having Crohn's disease and the symptoms that came from that was better than the side effects of these awful steroids in the first place. I'm stuck.

 

[Dramadoc]

Girl, I know where you're coming from. Diagnosed about a month ago and the Preds never really helped...was at 30mg when I started went up to 40 for about a week then tapered down to 10...no weight gain but sleep issues and the joint soreness that seems to be abating now. Seeing the GI next Tuesday with my second Remicade treatment but expect him to pull me off the Preds since they didn't work...happy to be rid of them after a couple of emotional outbursts at my family. They are too.