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Prednisone newbie - what to expect when starting?

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Posted 5/1/2013 3:37 AM (GMT 0)
Hello! I'm new to this forum, and relatively "new" to UC. Much to my surprise (and chagrin) I was prescribed prednisone on Monday and will be starting 40mg for 3 weeks until I see my GI again. I've read a bit about the troubles of weaning off pred, but haven't found much about what to expect when starting it and during the first couple weeks.

As a bit of background... I'm a 25-yr-old female, started experiencing symptoms last July and was diagnosed with UC in October. Have been in a flare up ever since. Prescribed Asacol 800mg, 3 pills twice daily. Didn't notice much reduction in symptoms, and in fact they have gotten worse since January. Although my symptoms are gradually worsening, I am "lucky" in that I experience no pain from UC and my feelings of "urgency" have never been overly worrisome.

I guess I have been less educated about UC than I thought, because being prescribed prednisone (and salofolk enemas) was a huge shock to me. And go figure, just recently I have started trying to lose a few pounds before summer and also wean off anti-depressants (Cipralex). Perfect timing for taking a steriod that will likely cause me to gain weight, and which certainly doesn't help with the depression!

Anyways, long story short... I am worried about starting prednisone, being on it for (at least) a few weeks, and then the weeks-long process of weaning off it. However, I'm going to try and take it one step at a time and focus on the next couple weeks.

Those of you that have taken pred -- please give me your insight/advice on starting out! Will it affect my mood right away? Will I have the energy to work out when I come home from the office? How quickly will I experience weight gain - and what on earth can I do to avoid that?! And of course, how soon would my symptoms lessen if pred is actually working for me?
Posted 5/1/2013 5:32 AM (GMT 0)
maybe
maybe
hard to say - eat less
possibly very soon
Posted 5/1/2013 8:37 AM (GMT 0)
1. It might. How it affect you is different for everyone.
2. Working out is good to counteract some of the preds side effects (bone density, blood sugar) but I always work out very light until I feel that the pred has reduced most of the inflammation.
3. You will get some weight gain from holding more water. That one is tricky to avoid. The rest will come from increased apetite so if you want to avoid gaining weight you need to be really careful what you eat.
4. Pred can work almost instantly, a day or two, or it can take slightly longer. It is difficult to say.
Posted 5/1/2013 10:37 AM (GMT 0)
I have been called a freak of nature because my body loves prednisone! It Works within a day or so for me. I do gain weight but that is because I can finally eat food again. I manage portions to keep within 5-10 pounds of my preferred weight. I am female 5'10" and like to be at 125, but pre UC I was 130. Most recent flare I dropped below 118, but 2 weeks on Pred and I am back to 128, but again I have eaten everything. The most I've weighed during all this was hitting 140, but I was getting no exercise and work was consuming me.

I am not a "rager" on Pred. In fact I get real clear, focused and can multitask like mad! My outlet (or mania) is a bizarre desire to bake. Cakes cookies pies you name it and at weird times. I've been known to come home on my lunch hour and make muffins or cookies all from scratch just because I had time.

My face has gotten fat(Moonface), but it goes away after you taper.
Pred is a hard drug on your body so unless you have IBS, get as much dairy as possible for your bones. Listen to your body and it will tell you when and how to taper. Good luck!
Posted 5/1/2013 11:23 AM (GMT 0)
Expect to feel better! I have so much energy when I first start prednisone! Tapering a short course is not that bad. It gets harder the longer you're on it. The side effects are cumulative for me - the longer I'm on it, the more it bothers me.
Posted 5/1/2013 12:20 PM (GMT 0)
Cdnk,

Welcome to the forum.

Prednisone - it works for some, and for others it doesn't work at all.

It didn't help me at all. So you'll have to find out by taking it. And I do hope it brings you some relief.

Just wanted to ask about:

Prescribed Asacol 800mg, 3 pills twice daily. Didn't notice much reduction in symptoms, and in fact they have gotten worse since January. Although my symptoms are gradually worsening,

Are you saying that since starting asacol, your symptoms have worsened? The reason I am asking is because if you look up asacol side effects, it says it can also make UC symptoms worse - in other words it may not agree with you. You may not be allergic to it, but you may be intolerant of it. And I wanted to make you aware of that.

You may want to speak with your doc, and see about trying another medication (non-5ASA) or even stopping the asacol for a few days to see if your symptoms improve at all.

By the way, when was your vitamin d3 last tested?

Low vitamin d3 is correlated with both UC and depression.

Also, there are other things you can do to help your symptoms: slippery elm bark powder, l-glutamine powder for long term colonic repair (can be taken also for diarrhea). If you are interested in these natural alternatives, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 5/1/2013 12:41 PM (GMT 0)
oh, and welcome k8 !
Posted 5/1/2013 12:42 PM (GMT 0)
What you are going to find is pred has a bunch of annoying side effects that seem to randomly hit different people with different things. None of those side effects are all that disconcerting (no lymphoma or anything), rather they are just nuisances.

Don't worry as not everyone gains weight while on pred (some do some don't). What pred does is it increases your appetite and if you indulge and eat more than you would normally then yes you will gain weight. Just eat as you would normally, resist the urge to overeat, and you will do just fine on it.

Some heal very quickly on pred, and they feel better within a few days of being prescribed it, others a week. However for me, it seemed to take me multiple weeks before I noticed even the slightest difference from pred, and a couple more weeks to heal further enough to make a difference (my body seems to heal very slowly on pred). So it varies for each person.

Pred never effected my mood.

Pred never effected my energy levels (I also started at 40mgs). I think you need a dose of more than 40mgs to really get an energy surge, probably those in the 50 to 60mg camp have it.

Most pred side effects go away as soon as you start to decrease your dosage, and disappear completely once you are off of pred (with the exception of weight gain which can be avoided).
Posted 5/1/2013 1:31 PM (GMT 0)
I just finished my first course of pred 2.5 weeks ago. Don't listen to all the horror stories; you may not have any side effects at all. I was scared because I had read all the terrible experiences here about it but I had almost NO side effects at all. The only side effect I had was my hands would "fall asleep" if I raised them above my heart level for a little while and that only started after I had been on it for over a month. It's going away now. No moodiness or insomnia or weight gain or anything else for me. I was on 40 mg for two weeks, 30 for two, 20 for two, 10 for two, then off. I didn't have any problems tapering. You should ask about trying Rowasa enemas. You're likely going to need to be on another medicine in addition to your Asacol to keep you in remission since you say that never helped you much. Good luck!
Posted 5/1/2013 2:05 PM (GMT 0)
he does need to "listen" to the horror stories - they are real and he needs to understand that !

nobody told me what to expect - i sure wish they would have - it's called being prepared -

Posted 5/1/2013 6:07 PM (GMT 0)
No point in worrying over something that hasn't happened yet and may never happen. Also keep in mind, most of the folks posting here are the worst-case scenarios. Most of the UCers who are doing well are out living their lives, not posting on a forum.
Posted 5/1/2013 11:17 PM (GMT 0)
Thank you all so much for the responses! I had been reading a lot of "horror stories" or worst-case scenarios about prednisone, which have worried me. It's good to know that for some people, pred can be helpful without having anything more than a few annoying or mild side effects. Your responses made it a bit easier for me to be more hopeful about pred and a bit less worried, although I'm still trying to be realistic with myself about the possible effects.
Posted 5/1/2013 11:27 PM (GMT 0)
InSoFla, thanks for your response. I would say yes, overall my symptoms have worsened since taking Asacol. I didn't know that bit of info about Asacol, that it can actually make UC worse. I don't know if it has that effect on me, but it certainly hasn't done anything to help. As of this week I am off Asacol, my GI prescribed Mezavant instead, which he says tends to be more tolerable (haven't done much of my own research on it yet). Already doing a bit better over the last couple days, though I'm not sure if that's the Mezavant or the Salofolk enemas...

Also thanks for the tip about Vitamin D3. Getting my blood tested soon, so I will make sure to ask about that. My doctor did recommend taking Vit D while taking pred, so I've started taking 1000IU daily.

Interesting that you eat Paleo, I've heard a few stories of how it's helped with UC. I've been back and forth about it for a while, never committed for more than a few days. I'm planning to -try- and eat more primal while I'm on pred, but I think it might be even harder to fight my huge sweet-tooth and carb cravings!!
Posted 5/1/2013 11:37 PM (GMT 0)
Cdnk,

My pleasure.
Yes, I wouldn't be surprised at all if you are feeling an improvements simply by eliminating asacol, as it sounds to me like you were intolerant of it.

Paleo, yes I like it, because it's anti-inflammatory.
If you have a sweet tooth, email me. There are Paleo desserts, ha!
Posted 5/1/2013 11:59 PM (GMT 0)
I think every person is different and possibly every time you are on it, it is different.  The first couple of times I was on it I was fine (relative) I had manic episodes of laughing to crying within seconds but no rage.  The most recent time I was on it though I turned into a raging ***** and my poor family paid for it.  Aside from the fact it wasn't working, I told the doctor I refused to take it anymore and weaned off it because my 6 year old didn't deserve how I was acting towards her for just being a kid.  Pretty sad when you have to sit them down and explain that mommy is acting crazy because of medication she is taking and it is not her fault.  She was wonderful though, because she kept saying it's the medication mom, don't worry.

I was told to watch my salt intake because that will make you retain the water more d/t the pred.  Yes you will want to eat all the time, and i mean ALL THE TIME.  Even after you have finished dinner, 5 min later your head will be back in the fridge again.  Lots of urinations, increased thirst, moonface but usually that is on a slightly longer dose.  I didn't sleep.  I had to get sleeping pills because I would sleep 1 hour a night and be "fine" .  My hands shook a lot from being "wired"  You should take calcium/mag supplements too b/c pred leaches the calcium from your bones.  Regardless of time on the meds you should still take them.  Also wash your hands a lot as it will suppress your immune system too.

And you will feel more energy because of the pred, so if your house needs cleaning..... turn

Posted 5/2/2013 12:23 AM (GMT 0)
Prednisone side effects effect the huge majority of patients. It's very rare that they don't. You should be aware of them ahead of time because the knowledge can be very useful in helping you deal with those side effects when they surface. The higher dose you are on and the longer you are on it make the side effects worse.
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