Low dose of Pred. What should I expect?

Hi,
Saw my GI today and although I am still without a diagnosis he is going to try me on pred. He's giving me 20mg for 7 days then tapering it by 5mg each week so I will be on it for a month.
From reading many posts I know that many of you start on a much higher dose so was wondering if I should expect to see improvment on a low dose? The doc said that I'm unlikely to get side effects as it's not a high enough does.
How long does it take to see improvments?
Any other advice greatly received!
Cheers
Sam

Hmmm, that is a pretty low dose. You shouldn't see much in the way of side effects; hopefully it is a strong enough dose to give you some relief. You should notice an improvement in the first week. How bad are your symptoms?

Hi Sam, I just posted a similar response in your other thread but thought I'd give more detail here - I'm currently on 20 mg of pred, and will be going up to 40 soon if 20 goes well, and then I will taper down from 40 over the span of a couple of months. I had been on 10 mg of pred last month, just to see if it affected me since I am also still undiagnosed. It did work, even at such a low dosage I felt some relief and more energy and less symptoms. So I was on 10 mg for just 5 days as a test to see if it worked, and as soon as the 5 days were over, my flare came roaring back to life. So the pred definitely helped me even at such a low dosage and the effects were fairly immediate, I started feeling relief within a couple of days of starting it.

So my GI put me on 20 mg of pred starting last week and he is monitoring me to see how it affects me (so far so good, the only side effect is some insomnia, and my symptoms have been greatly reduced - still a little bit of d, but nothing like it was before - and I have more energy and generally feel happier and have an appetite again). I'm a little nervous about going up to 40 mg, but I'm glad to finally be on meds that are working for me. I hope the pred works well for you - good luck and let us know how it goes!

Hi Sharon. It's difficult to say how bad my symptoms are but I have been off work since January! The Asacol has stopped me having d but my bms are still not right. I am plagued with fatigue and insomnia. I have stomach pain every day though it is on and off and I've started to get lower back pain when sitting and in bed now too.
Cat - we meet again! Thanks for ther info. I have started the pred today after picking the meds up from the GP. Fingers crossed. I am glad to hear that you have got some relief from it. Long may that continue.

Sam,
I can't say that I've ever been prescribed Pred for purposes of treating Crohns but back in January I was having symptoms but at that time they said I just had IBS and I caught bronchitis and they prescribed me steriods for only seven days. I can't recall the exact mg amount but I know that it tapered down each day until the pills were gone and even in just that short amount of time I had such tremendous relief from my symptoms during that time. This was the first clue that I had something more than just IBS because I had a really big improvement with just a small amount of meds. Hopefully it will provide you at least SOME relief I hope you feel better soon!

I've been dropped from 40mg to 20mg with a stopgap of 30mg inbetween.
I've started to notice my symptoms beginning to return, so, yeah.
20mg is not a dose that's worked for me, but hopefully it'll work for you!
Good luck

Good luck Sam!

I personally don't think 20mg will touch the sides but I hope it works for you! but if it doesn't, you can always up the dose. It works wonders at high doses, when I tapered down to 20mg, my symptoms came back so I upped it again for a few weeks then tapered again!
everyone reacts different tho!
xxx

I had my first taste of a bad flare just this year in march. Lost 25 lbs and was in bad shape with a lot of fatigue and joint pain. I was treated with 20 mg of pred for a week, then tapered by 5 each week until I took just 5 for two weeks. ALmost the same as you just an extra week at 5. It worked great and I felt the effects within two days, the joint pain was first to go. I had many comments about the low dose but it worked for me. I am now on Lialda and I am doing good. Good luck!

I want to add that I had D pretty much through the taper but it was getting better, the Lialda is finally stopped it.

Thanks for all your advice.
Crohnicaly - I'm glad to here that a low dose worked for you. It's positive to hear!
Well yesterday was my second day on Pred and I didn't feel great. I'd only managed 4 hours sleep and was just so tired and feeling crappy (no pun intended!). But then today...
Today I feel almost normal for the first time in 7 months!!!! I've not experienced any stomach pain so far, my bms have been good to firm and I have so much more energy. We have been for a day trip out and I managed to be out for 4 hours with plenty of walking. I am just so happy. It's hard to explain but I know many of you will understand. Plus my backache has subsided greatly.
I just hope it continues.
Huzzah!

You sound like a horse racing commentator 'the going is good to firm' lol! Glad to hear you're feeling better!

Ha! Yes I did think of that when I typed it but thought it was such a great way to describe it!
I feel dead happy. Yay!

bushydougie said:

Thanks for all your advice.
Crohnicaly - I'm glad to here that a low dose worked for you. It's positive to hear!
Well yesterday was my second day on Pred and I didn't feel great. I'd only managed 4 hours sleep and was just so tired and feeling crappy (no pun intended!). But then today...
Today I feel almost normal for the first time in 7 months!!!! I've not experienced any stomach pain so far, my bms have been good to firm and I have so much more energy. We have been for a day trip out and I managed to be out for 4 hours with plenty of walking. I am just so happy. It's hard to explain but I know many of you will understand. Plus my backache has subsided greatly.
I just hope it continues.
Huzzah!

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Hey that's great news! I'm so glad you're feeling better. I think it's better if you can get by on a small dose because as good as Pred. makes you feel, it's pretty nasty on your system.

Don't be surprised if you get sort of loopy. Your short term memory might get really bad and you may get real moody, short tempered or even emotional. I hate admitting in public but a sappy movie gets me tearing pretty easily, but on the pred, my gosh, I was getting choked up watching comedies. lol! These sort of side effects usually aren't real severe, don't be too alarmed about it, but don't be surprised either.

Thanks for the warning Crohnicaly. It's good to know about any possible side effects then I wont feel like I'm going mad!!
Can I ask about how you felt after you tapered and then came off the Pred? I'm still on 20mg and feel pretty good. I hope that it continues but would like to hear about your experience to be fully aware as I know so others on higher doses had their symptoms return after they tapered.
Cheers
Sam

Sam,

I started taking Lialda the week I went to 5 mg and actually I was going to go just one week at 5 like you but my new GI (I switched docs in the middle of the pred. treatment) said to take 5 for an extra week as he started me on the Lialda.

Lialda is a form of mesalamine, it also is sold as Pentasa and Asacol.

Ok I remember now that actually I cheated and stayed at 10 for an extra three days too. I had some occasional abdominal pain when I got down to 10 mg, but it was nothing really, but that pain is why I stole and extra few days on it. Also the D was starting to go away but was still there until I started the Lialda.

So overall it was a very smooth to transition off the pred. onto Lialda. I hope it's the same for you!

Scott

im up at the hosp next tue and more or less going to tell them to put me back on pred, after the humira finally got me off it after 8 year, but i just cant put up with this joint pains and aches, and not being able to walk properly any more, wen i was tapering off pred when statring humira at the low doses, 10 mg a day till up to a month off it things were great, so might just be back on it again hopefully, and get back to errr kinda normal lol

Hiya Sam

so glad you're feeling so much better hun
I tapered from 40mg successfully after 4 months. but then I suffered with severe tendonitis and joint pain which apparantly is a withdrawal side effect. I'm ok now tho
xxxx

Thanks for all the advice.
Scott - I am already on Asacol, have been since I first saw the GI in March so hopefully I'll be ok!
Am still doing really well. Can't quite believe it! I even went into school for an hour and a hald the other day to get me back into work (slowly). Had to rest when I got home but was really proud of myself!
My symptoms are still pretty much gone. Have gone down to 15mg today. The only pron is the insomnia which is, naturally, making me feel quite weary yet my mind races...
And I can walk normally again. No going slow for me now.
Long may it continue!!!
Huzzah

bushydougie said:

Thanks for all the advice.
Scott - I am already on Asacol, have been since I first saw the GI in March so hopefully I'll be ok!
Am still doing really well. Can't quite believe it! I even went into school for an hour and a hald the other day to get me back into work (slowly). Had to rest when I got home but was really proud of myself!
My symptoms are still pretty much gone. Have gone down to 15mg today. The only pron is the insomnia which is, naturally, making me feel quite weary yet my mind races...
And I can walk normally again. No going slow for me now.
Long may it continue!!!
Huzzah

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Excellent! Yes let the good times last! You know there is something very funny about the name Asacol for a Chronies drug. I guess if it helps your ass then may as well have that in the name right? But really I think it's a good nickname for Jack Daniels. Because that has alcohol and if you drink enough you become an ass, Asacol! lol! sorry I'm in a mood today. Glad you're doing better! edit: Huzzah!

Sam,

Ironically, I just started 20mg of Prednisone yesterday and was wondering if that would be a high enough dosage to reduce my inflammation and symptons??? So far, I haven't noticed a difference yet, but then again, I haven't even been on it two days yet.

I do know that when I was first diagnosed with Crohn's ten years ago, 40mg of Pred worked wonders for me at that time. And I could taper off all the way down to about 5-10mg before I would start to flare up again...Eventually, only Remicade was able to get me off it entirely. Now I'm finally back on it again after nearly 9 years!

BTW, insomnia is a direct side effect that I had to deal with as well. I also became somewhat irritable and developed bad steroid acne after a while, which went away once I got off the stuff.

Best of luck to you and I hope that you and your GI doc can find a better treatment to replace it soon,

Mike

Scott -:wink: You're right about the drug name! Hadn't actually thought of it like that duh! We've got a cream in the UK for piles called Anusol!! That always cracks me up. Hope you're not in a mood anymore?

Mike - I hope the pred is helping you now? I'm down to 15mg and it is still helping though have a little stomach pain but not much. Still have insomnia though last night I managed 7 hours sleep. Whoop!

Hi, I'm writing to let you know about my husband with ulcerative colitis. He started a flare about 4 months ago and it kept getting worse and worse until he ended up in the hospital 16 days ago. They have him on 60mg of prednisone and it just started helping him feel better about 5 days ago. We though it would kick in quickly but it took a very long time (at least according to us) but again he had severe symptoms. His hands, feet, and face got very swollen and fat but now they have all gone back to normal looking. He also had high white blood cell count which they thought might be an infection but now they think it is due to the steroids.

I hope that you find relief soon without too many side effects!

bushydougie said:

Scott -:wink: You're right about the drug name! Hadn't actually thought of it like that duh! We've got a cream in the UK for piles called Anusol!! That always cracks me up. Hope you're not in a mood anymore?

Mike - I hope the pred is helping you now? I'm down to 15mg and it is still helping though have a little stomach pain but not much. Still have insomnia though last night I managed 7 hours sleep. Whoop!

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Unfortunately, the 20mg didn't help at all over the 3+ days I was on it, so my GI doc upped the total to 40mg a day and a half ago and still no change in my symptoms. If this higher dosage doesn't work, then I'm not even going to bother to have it upped again...I'll just ween off while trying either Remicade or Humira sometime next week...

mike i found that upping the dose of pred didnt really kick in till about 10 -14 days, give it time and if it works youll be really gratefull you waited

I was on 40mg, went to 35 as I don't like the taste, then my doctor told me off, so I had to go back to 40.

Mike - sorry that the pred isn't working yet for you. It would seem that most people on here start off at 40mg so I do hope it kicks in soon and you get some relief. As gmm says give it a little time to make sure.

Hi Sam,

Just saw this post, and I'm glad the Pred helped you. How are you feeling now?

I read that you have trouble with insomnia, and just wanted to tell you that Prednisone is not really helping with insomnia, unfortunately. At least that was the case for me. I just couldn't sleep when I was on Prednisone (especially the high doses). Got really alert and restless, and almost felt like I was shaking inside (sounds weird, I know), so sleeping was really difficult. It is heavenly to be off the Pred again, but obviously it does help for our inflammations.

Good luck with everything, sweety!

xoxo

Hi Sophia,

I know exactly what you mean by the shaky but I also had this before I was on pred. Sometimes its all over my body and sometimes it just feels like all my stomach is vibrating away.
I managed 7 hours sleep the other night and was overjoyed but am back to insomnia again. Still it's a small price to pay for the other great benifits I'm getting. So on the whole I'm doing so much better than 2 weeks ago. Long may it continue.
I hope that you are doing well?

Sam

I'm sorry to hear you still have trouble sleeping. It is so frustrating not to be able to sleep! When it happens to me, I just feel like I've wasted so much time lying there waiting to go to sleep... Annoying!

I'm sure you've already tried this, but I know there are certain teas that are supposed to be calming and that will help you sleep. I've never tried it, so I don't know if it works, but having a cup of tea is always nice, right? Also, I just remembered that I could NOT sleep while on Pred, and someone told me it could be better to take the Pred in the morning rather than at night, as it can make you a bit too energetic. Have you tried that?

What I noticed was that I was tired in the morning, and during the day, and would be able to doze off in the middle of the day, but only when I went to a relaxation/meditation thing at work. It only lasted 15 minutes each time, but we turned off the lights, listened to relaxing music and this physiotherapist told us to focus our thoughts on different body parts, and we were supposed to feel how heavy the body was. (I know it sounds wacko!) So I would actually be able to fall asleep during that, but not at night in my own bed for some reason. So I guess the lesson for me was that some kind of meditative relaxation may help. You should try it if you have the chance. I'm sure they have some good relaxing music on Spotify.

Hmm, I'm supposed to be working, so off I go! Good luck with everything!

xoxo

Certainly hope you feel drowsy and sleepy asap!
Glad to hear the Pred has other benefits though!

I am on my third round of pred this year -- start at 50 first week, then down to 25 next week, 20, 15, 10, then 5. So far after my 1st day it has done it's magic. I want off this darn stuff though!! Doc says Imuran if this doesn't work, I don't want to go on Imuran, anyone use it?

Hi BK, :bigwave:

Imuran, like all other treatments, work for some and not others. My daughter is on a maintenance dose of Imuran and she has had no problems with it. Scared me S***less when she first went on it but it has kept her in remission for 4 years post surgery.

Dusty.

I've tried Imuran; it didn't work for me, but it works for some. If Imuran doesn't work, they may then try you on 6MP, which is very similar to Imuran and can be better tolerated in some people. Unfortunately, both Imuran and 6MP did not agree with me.

Me too Sharon, the immunosuppressors go straight to my liver, and cause pain and nausea.

Being on Low dose pred now 15mg and both my current Gi and GP want me off it, but go to what? I will wait til my appt next Thursday and if no word on a a future gi yet, then try Entocort and or Pentasa... ugh.