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Just started pred

just started pred

i have just started pred today 8 5mg pills for a week, i have read all the side effects, can anyone tell me their experiences of this drug. I have to continue with asacol alongside and am hoping the pred helps without me becoming a manic lol, my kids read side effects and keep asking how i feel lol like i will burst into a raving loon at any min, any info would be appreciated
 
You're likely to experience an increase in energy, and increase in appetite (only when I'm really sick does this not happen) and perhaps a bit of insomnia or trouble sleeping.

Other problems that can happen, and sometimes happen to me include increase in acne (which should sort itself out once you start tapering), and moon-face if you're on a high-dose for an extended period of time.

If you do a search, I'm sure you can find a link to a post of the various side effects that board members have experienced whilst taking pred.
 
when I was on it I had crazy night sweats alongside with a warm tingling feeling throughout my body. Good luck! I hope you get better and get off pred soon
 
I was on a high dose pred for 10 days for an infection unrelated to Crohn's. Side effects I had were increased hunger, night sweats and horrible nightmares (could have wrote some wicked scary movies lol).
 
I've had a renewal of my hot flashes, and increased energy until I started tapering. Now I'm tired again. I waited for the mood swings, but they really were not that bad. Of course, I'm 64 now, and have had other reasons for many mood swings in my long life....LOL
Presently on 15 mg of Pred
Pentasa 4000
 
I usually get moon face, insomnia, acne and my brain works really slowly......take a long time to process anything.
But I've never gotten hungry or any of the manic symptoms.
It's kinda crazy how differently these drugs impact everyone.
 
Prednisone feels like a wonder drug to me. Increased appetite, increased energy, feels great.

However you need to make sure you take a calcium/vitamin d supplement for your bones, especially if you plan to be on steroids a long time. Start early and prevent any bone loss.

Also, when you eventually get off the prednisone, you will need to come off very slowly. You may experience feeling bad while coming off and many doctors will try to taper your dose too low too quickly.

So, my advice: Calcium/Vitamin D (Do not underestimate this. I am not kidding. I can show you x-rays of my spine with 7 compression fractures due to prednisone. I wasnt taking any calcium.) - and make sure to go off it slooowly and remember your dose every day, at the same time, or you will feel withdrawal symptoms.
 
When I started Pred at 40 mg I got pretty hyper (especially in the afternoons) and had some insomnia, but losing sleep didn't matter because I had extra energy. Well that lasted for a week and then I crashed and felt just as exhausted as usual. I had some increased acne on my back, but not terrible. Sometimes when I stepped down my joints would become inflamed in protest (joint pain was a symptom I had before I started Pred though). All in all I felt the side effects were pretty minimal, especially after hearing the horror stories. I guess I was lucky in that regard. I don't *think* I had any of the horrible emotional side effects, but it's possible I am not aware of it.
 
I just got out of the hospital last night, and they started me on IV solumedrol, amongst other things. I was very, very sick when I came in, and I had C-diff, which I didn't know about. I won't get into everything on here because it was quite a ridiculous week, but they started me on 40mgs of prednisone tablets, and I have not felt this good in MONTHS. While in the hospital, they were giving me 90mgs of solumedrol, which is basically prednisone. I cried alot, and was very emotional. I noticed an icrease in my appetite before I got really sick again. Now I am on vancomycin, pred, imuran, t3's, percocet and gravol. I am also taking a vitamin D supplememt and calcium. Two days ago I thought I was going to die. I woke up this morning, on no painkillers or nausea meds, and I felt absolutely amazing. I took some pain and nausea meds anyways, just to be on the safe side, but I think I would have very minimal pain without them. I do feel very hyper, very happy and almost manic. I feel like I need to be doing something. I have no joint pain, no stomach pain, no diarrhea, nothing. I had one bowel movement this morning. It wasn't as formed as it should be, but it wasn't pure liquid either. I'm not experiencing any cramping or anything. My appetite is back, which is great because I am down to 130 pounds from 170, and I don't like being this skinny. All in all, I would suggest prednisone to anyone. Sure, some people are bound to have bad side effects. But don't be like me and not take it just because you're scared. I should have started it a long time ago, but now that I'm on it, I feel 100% better, and like I have my life back. Good luck with your crohns, and I really hope the prednisone works for both of us!
 

Ian

Location
London, UK
Glad to hear you're doing so well Samantha :) If the Pred continues to work are you holding off surgery for a while? Is Remicade still happening?
 
thanks for all the replys i really appreciate it, is prednisone he same as Prednisolone? This is my second day on them now and the tiredness and wiped out feeling is leaving me and i feel better than i have in a long time. I have been diagnosed with pancolitis and have to go back in 6 weeks time, in meantime i have to taper down 1 pred per week and am currently on 40mg. I think the next stage in 6 weeks is to move onto azathioprine. And thanks all for the advice on vit d i will be sure to take muti vits
 
I just got out of the hospital last night, and they started me on IV solumedrol, amongst other things. I was very, very sick when I came in, and I had C-diff, which I didn't know about. I won't get into everything on here because it was quite a ridiculous week, but they started me on 40mgs of prednisone tablets, and I have not felt this good in MONTHS. While in the hospital, they were giving me 90mgs of solumedrol, which is basically prednisone. I cried alot, and was very emotional. I noticed an icrease in my appetite before I got really sick again. Now I am on vancomycin, pred, imuran, t3's, percocet and gravol. I am also taking a vitamin D supplememt and calcium. Two days ago I thought I was going to die. I woke up this morning, on no painkillers or nausea meds, and I felt absolutely amazing. I took some pain and nausea meds anyways, just to be on the safe side, but I think I would have very minimal pain without them. I do feel very hyper, very happy and almost manic. I feel like I need to be doing something. I have no joint pain, no stomach pain, no diarrhea, nothing. I had one bowel movement this morning. It wasn't as formed as it should be, but it wasn't pure liquid either. I'm not experiencing any cramping or anything. My appetite is back, which is great because I am down to 130 pounds from 170, and I don't like being this skinny. All in all, I would suggest prednisone to anyone. Sure, some people are bound to have bad side effects. But don't be like me and not take it just because you're scared. I should have started it a long time ago, but now that I'm on it, I feel 100% better, and like I have my life back. Good luck with your crohns, and I really hope the prednisone works for both of us!
The way you are talking makes it sound like you might not be aware of the short term use that steroids (prednisone) are generally used for. Im glad you are feeling great, but you need to be aware that you can not be on steroids for a long term, as side effects do develop. Your doctor will likely want you to decrease your steroids and start a taper in the near future. More long term medications like Imuran, 6mp, Remicade, Humira, etc. are used for maintenance and are more long term solutions. Prednisone is used usually as an "emergency bandaid" of sorts.

Im glad you are feeling better, but I dont want you to have false hope that you are cured. You will have to face up to your underlying disease and eventually deal with it. One way or the other - 40mg is a high dose to be on (especially if you take it multiple times a day) and just isnt a viable option long term. You need to use this time wisely while you feel well in order to plan for the future. You need to try to save your steroid use and use it only when absolutely necessary. The side effects are progressive and get worse over time - you wont feel it in the beginning.

Glad you are feeling well and I hope you continue to feel well :)
 

Ian

Location
London, UK
Splasher, I think Prednisone converts to Prednisolone in the body (via the liver or something?). They tend to use that in the US etc, whereas in the UK Prednisolone is used. So essentially, they're no different. I'm not really sure why there are two kinds? I think I've also heard Prednisolone is less harsh on the body, so I don't know why it's not more widely used.

Anyway, glad you're feeling better :) It can be like a miracle. Pred used to put me into perfect remission in about 3 days while it worked for me. Wish it hadn't stopped!
 
thanks Ian and am sorry to hear it stopped working for you. I know steroids cant be a long term fix due to the damage they can cause but i am thankful for every day i feel better and even a couple of weeks of feeling normal is great, now i see why everyone likes it so much
 

Ian

Location
London, UK
Lol yeah, and if you're lucky like me and don't get anything other than superficial side effects (moon-face, acne, a bit of weight gain), it really isn't hard to sing it's praises. As far as I know it's never done anything serious like affect my bone density, glucose levels or mental state, so I dodged a few bullets there.

Unfortunately some people either seem to build up an immunity to it, or their disease progresses to a point where it's just not enough. Hopefully in your case it will work if and when you need it in the future, every time.
 
The way you are talking makes it sound like you might not be aware of the short term use that steroids (prednisone) are generally used for. Im glad you are feeling great, but you need to be aware that you can not be on steroids for a long term, as side effects do develop. Your doctor will likely want you to decrease your steroids and start a taper in the near future. More long term medications like Imuran, 6mp, Remicade, Humira, etc. are used for maintenance and are more long term solutions. Prednisone is used usually as an "emergency bandaid" of sorts.

Im glad you are feeling better, but I dont want you to have false hope that you are cured. You will have to face up to your underlying disease and eventually deal with it. One way or the other - 40mg is a high dose to be on (especially if you take it multiple times a day) and just isnt a viable option long term. You need to use this time wisely while you feel well in order to plan for the future. You need to try to save your steroid use and use it only when absolutely necessary. The side effects are progressive and get worse over time - you wont feel it in the beginning.

Glad you are feeling well and I hope you continue to feel well :)
Actually, I'm only going to be on the prednisone for about a month. At the end of this month I will be starting remicade. I can't take the remicade right now because I have a C-diff infection. They started me on the vancomycin in the hospital as soon as I tested positive. Once I had been on that for about 4 days, they started the 40mgs of pred. They couldn't just do nothing about the crohns for a month, because I have alot of inflammation all through my intestines. This was really the only option, since they don't wanna do surgery yet. Since I'm only 20, they want to hold off on any resections for as long as possible. Although I'm doing really well on the steroids, I know I can't be on them for too long. My dr has a very good long term plan for me, and he really thinks it's going to work. When I said that I would suggest prednisone to anyone in a flare, I didn't mean as a long term fix. I've been in this flare for so long, so I was really shocked at how fast the prednisone worked. And I haven't experienced very many side effects. The pills taste like shit though lol
 
Actually, I'm only going to be on the prednisone for about a month. At the end of this month I will be starting remicade. I can't take the remicade right now because I have a C-diff infection. They started me on the vancomycin in the hospital as soon as I tested positive. Once I had been on that for about 4 days, they started the 40mgs of pred. They couldn't just do nothing about the crohns for a month, because I have alot of inflammation all through my intestines. This was really the only option, since they don't wanna do surgery yet. Since I'm only 20, they want to hold off on any resections for as long as possible. Although I'm doing really well on the steroids, I know I can't be on them for too long. My dr has a very good long term plan for me, and he really thinks it's going to work. When I said that I would suggest prednisone to anyone in a flare, I didn't mean as a long term fix. I've been in this flare for so long, so I was really shocked at how fast the prednisone worked. And I haven't experienced very many side effects. The pills taste like shit though lol
Ah, I see. Hopefully the Remicade will work for you and you can start to taper down your dose. Also, I didnt notice any probiotics in your medication list. Many people (including myself) will tell you that probiotics can be important, especially in C-Diff. Probiotics actually have been shown clinically to have a protective effect against infection like C-Diff. The vancomycin will have probably destroyed all your gut flora, so you should definitely take a good probiotic once you are finished, or even before then as well. My personal recommendation is Acidophilus Pearls, (or some other acidophilus using the same protective encapsulation method, there are many generics). These can help you not only with Crohn's symptoms, but also may help protect against C-Diff coming back. Its quite common to have a recurrence of C-Diff, so lowering your risk is important. (the pearls are really cheap as well, maybe $20 for 3 month supply on amazon. They also contain Bifidobacterium Longum as well, another related protective strain).

The little pearls are neat because unlike other probiotics such as the ones found in yogurt, they are protected until they reach the intestines, like a time release capsule. The probiotics are often destroyed when they reach the acid rich environment in your stomach, but the pearls have been shown to have significant survival rates. The lactobacillus strain has shown particular protective effects, including C-Diff.

Also, I know what you mean about the prednisone pills tasting horrible. When I used to take high doses, my nausea and gag reflex was so bad I couldnt take the pills because of the taste. I ended up coating them in hersheys chocolate and then taking them, but that sometimes made them actually harder to swallow, so eventually I used bakers chocolate, coated the tablets with a thin layer, let the chocolate dry, and then took them :tongue:
 
Ah, I see. Hopefully the Remicade will work for you and you can start to taper down your dose. Also, I didnt notice any probiotics in your medication list. Many people (including myself) will tell you that probiotics can be important, especially in C-Diff. Probiotics actually have been shown clinically to have a protective effect against infection like C-Diff. The vancomycin will have probably destroyed all your gut flora, so you should definitely take a good probiotic once you are finished, or even before then as well. My personal recommendation is Acidophilus Pearls, (or some other acidophilus using the same protective encapsulation method, there are many generics). These can help you not only with Crohn's symptoms, but also may help protect against C-Diff coming back. Its quite common to have a recurrence of C-Diff, so lowering your risk is important. (the pearls are really cheap as well, maybe $20 for 3 month supply on amazon. They also contain Bifidobacterium Longum as well, another related protective strain).

The little pearls are neat because unlike other probiotics such as the ones found in yogurt, they are protected until they reach the intestines, like a time release capsule. The probiotics are often destroyed when they reach the acid rich environment in your stomach, but the pearls have been shown to have significant survival rates. The lactobacillus strain has shown particular protective effects, including C-Diff.

Also, I know what you mean about the prednisone pills tasting horrible. When I used to take high doses, my nausea and gag reflex was so bad I couldnt take the pills because of the taste. I ended up coating them in hersheys chocolate and then taking them, but that sometimes made them actually harder to swallow, so eventually I used bakers chocolate, coated the tablets with a thin layer, let the chocolate dry, and then took them :tongue:
Yes! I've been meaning to start a probiotic supplement. Right now, money is pretty much non-existent, but I completely agree about the importance of good bacteria. I actually know alot about that kind of stuff, and I studied nutrition when I was 18. I definitely plan on starting probiotics as soon as possible. While I was in the hospital, I specifically asked for a good probiotic yogurt, just to replace some of the good bacteria that the vancomycin wiped out. I'm going to be very, very careful about re-infection with c-diff. I have some old probiotics but they haven't been refrigerated and are probably useless by now, so I'm not even gonna bother. I'll just pick up some new stuff when my disability starts coming in.

That's such a good idea, with the chocolate coating. Again, I have no money for chocolate haha, but I've got a pretty good technique down. I make homemade lemonade (also to take the vanco in) and I take like, 3 pills at once and swallow them as fast as I can. I still get a bit of an aftertaste, but it's a seriously small price to pay to feel as good as I do. I'm done being whiny and scared of my medications. I know my doctor is monitering me like crazy to make sure I don't have too many side effects. My list of prescriptions that I haven't gotten yet, is wild. He prescribed me ANYTHING that I might need to combat any side effects, which I haven't noticed too many of to begin with. I'm just literally thanking the universe for every day that I feel good.
 
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