Joining the prednisone crew

[seaofdreams]

Just got back from the doctor with what feels like insane amounts of pills. I'm starting on 40mg and tapering over the next 8 weeks so it'll be very interesting to see how I go. I have only been on Salofalk for the last month so I'm expecting a big difference. I thought I would be nervous but I'm excited to see how it helps. I've stocked up on supplements to keep myself healthy while I'm on it and to prevent as many side effects as possible.

My mum always tells me a story about when I was really young and on prednisone for asthma and I used to get so hyped up on it, one day I was running around so fast that I hit my head on the edge of a hospital bed and needed stitches. So I'm kind of looking forward to the extra energy :ylol2:

My doctor was telling me that I possibly might have a flare up when I have tapered down to about 15mg and if that is the case, I will be prescribed Imuran, and if I don't get any flare ups, I'll be back on Salofalk. Is that progression pretty typical?

If you have any tips, tricks or words of wisdom to share with a newbie, that would be wonderful ^_^

 

[shazamataz]

Hi sea,

Love the new photo Interesting to me that you are in a similar stage to me with the meds. I was put straight on Prednisone and not had Salofalk, and tapering from 40 as well (though I was on more in the hospital). I actually just received a letter with an order for blood tests in preparation for a visit to the doc on monday and, being nosey, I looked up what the tests were for, and they are testing me for whether I can have Imuran or not. That kind of freaked me out a lot!!!

I am doing well on the pred - tapering over 3 months and about halfway there - and really hope I don;t flare when it reduces. I would also be interested in hearing of people who DIDN'T flare when going off pred. My symptoms were different in that I had C instead of D. I only have the Crohns in my Ileum, not the colon.

I'd like to think thye could try me on something milder like entocort or pentasa first (if not under control coming off pred) as opposed to messing with my immune system this early on in the process!

Enjoy the pred. My first couple of weeks were a bit 'mad' but I got lots done! Seem to have calmed down now on 30 mg.

I know you were worried about weight? It has taken me nearly 7 weeks to put on 2.5kg so no biggie - I actually am supposed to put on more as still only 51.2kg.

I don't think I have moon face though have filled out a little - an improvement actually!

I was also wondering if the moon gets worse or better when tapering - perhaps someone can tell us?

Anyway, rambling, good luck with the pred, I hope you feel better

Shaz :Flower:

 

[seaofdreams]

Hi Shaz, thanks ^_^

Our treatments might be similar because of a recent diagnosis and close-ish geographical location? Maybe we do things a bit different down under, haha.

My inflammation is in my colon but worst in my ileum too. I'm just going to be careful and resist the urge to increase my eating. I'm not too worried about "moon face" my face is rather roundish already and it'll just make me look younger, haha. I'm a little concerned about the potential for acne or redness on my face but mostly because I'm a skin care therapist and I can't very well go around telling people how to fix their skin if I can't fix my own, eep.

 

[MD24]

i have been on prednisone for about 2 weeks now since i was diagnoised
am on 60 mg\day ( i was told its the highest dose) and ll be tapering for 4 months
it really helped my guts to calm down( though am not sure its the one cuz am taking many other drugs but they say among them its the one which has immediate effect)
side effects so far:nothing execpt big increase in appetite but all for nothing as i gained no weight at all
i was very excited when first heard about how magical pred is and thought great this ll help me gain some weight and give me some mania instead of the fatigue,but after to weeks really nothing happened so far . i know moon face is a nightmare for lots of ppl but i wake up every day dreaming of it !
cmon prednisone puff me puff me why dont u
good luck

 

[katiesue1506]

From my experience the moon face and acne and such fun side effects start as you are tapering. Last time I had most of them on 20-15mg. I'm at 20 mg right now and have noticed the moon face and I've gained weight. I have a little more acne, but its tiny and being that I have freckles you can't see it.

 

[seaofdreams]

i have been on prednisone for about 2 weeks now since i was diagnoised
am on 60 mg\day ( i was told its the highest dose) and ll be tapering for 4 months
it really helped my guts to calm down( though am not sure its the one cuz am taking many other drugs but they say among them its the one which has immediate effect)
side effects so far:nothing execpt big increase in appetite but all for nothing as i gained no weight at all
i was very excited when first heard about how magical pred is and thought great this ll help me gain some weight and give me some mania instead of the fatigue,but after to weeks really nothing happened so far . i know moon face is a nightmare for lots of ppl but i wake up every day dreaming of it !
cmon prednisone puff me puff me why dont u
good luck

Thanks for the good luck and same to you
I know this is a terrible thing to say but I wish that weight loss was a major symptom for me. I have trouble keeping my weight down, not the other way like most Crohnies

 

[seaofdreams]

From my experience the moon face and acne and such fun side effects start as you are tapering. Last time I had most of them on 20-15mg. I'm at 20 mg right now and have noticed the moon face and I've gained weight. I have a little more acne, but its tiny and being that I have freckles you can't see it.

It's strange to think that your side effects showed up when your dose was lowered. Maybe it had more to do with the prolonged exposure? I think I could handle it if I only got a few spots. I'm lucky, I've never had skin problems before except for a bit of couperose, which wouldn't surprise me if that flared up again.

 

[katiesue1506]

I think it was that way because that's the point when the body FREAKS out that you are no longer feeding it the corticosteroid level you once were and its starting to have to produce it on its own... kinda like teaching a kid to ride a bike, you hold on to them until its up to them to start peddling, when they start peddling on their own they are a little shaky at first.

 

[shazamataz]

Och, so maybe I WILL get fat and moon-facey?

 

[seaofdreams]

Just an update:
I've been on the pred for 5 days now and I am noticing a difference already. Much less pain, only 1-3 BMs daily and no D at all which is great. The only negatives I have encountered so far is a cottony type feeling in my mouth so I've been drinking loads of water and a bit of C (which was a nice change, haha) and nausea but it's manageable. I didn't expect to be feeling so much better in such a short amount of time.

 

[My Butt Hurts]

I've been on the pred for 5 days now and I am noticing a difference already. Much less pain, only 1-3 BMs daily and no D at all which is great.

Yay! That's awesome!

 

[shazamataz]

That's good news

i had that funny mouth feeling too. Actually I felt kinda numb and fluffy on my whole face and my throat felt 'puffy' inside. I also had sort of tingly-numbness over most of my skin actually, especially on my back. This all went away in a couple of weeks.

I hope you are using all that extra energy that Pred gives you to get lots done!

 

[Ezio]

after yesterday's colonscopy....one month of prednisone!!