Prednisone fears....HELP

[Shelbylou]

:sign0085:

Hey Guys.

The lovely David guided me here because i've recently been diagnosed with Crohn's and prescribed pred.

I went into hospital on Sunday night and was given antibiotics via IV as well as a steriod shot once daily, but the GI discharged me with a whole myriad of medication. One of them being prednisone.

The doesage he's put me on is 60mg for 21 days and then start to taper it down. I will admit, that after reading a couple of experiences on here, the drug scares the bejesus out of me and truthfully, i'm not a happy bunny about having to take it.

Firstly, I take citalopram for depression which I have taken for a year and a half. I'm worried that the pred will effect that and i'll spiral down into the dumps again. The other problem I have is I suffer with PCOS (Polycysic ovarian syndrome), which means I struggle to lose weight at the best of times, and this medication will make me gain weight. I'm a big girl already, and lost over 2 stone in weight because of the Crohn's. I want to carry on losing weight the healthy way, but pred means weight gain etc and i'm not sure I want that.

Also, the facial hair. I already get that courtesy of the PCOS, along with a few pimples but a lot of people have said that it made this worse along with hot flushes and sweating...all of which I get anyway.

I'm just scared and worried and haven't taken the first dosage just yet because i'm so afraid. I guess I just want some advice because ringing my consultant was useless. He didn't listen to my fears and just told me to take the pred. I also tried to contact my IBD nursing team who I have been allocated to, but they haven't rang back at all. All in all, i'm just getting a bit down in the mouth with it all now.

Thanks for listening to me

Take care and big hugs

Michelle

PS...can someone shed some light on 'moon face'? What is it? x

 

[marjaw]

Moonface is when your face gets round and puffy from prednisone. Everyone reacts differently to the drug. It works really well on reducing inflammation so take it if it was prescribed for you. I've been on pred since March and have had little side effects, mostly insomnia plus I gained 5 lbs, but it worked so well on my Crohn's that I will deal with any side effects. The stuff people posted CAN happen to you, not WILL happen. And if they do happen it can be to varying degrees.

 

[SherryLynn]

My story is simular to yours. I just started my pred 3 days ago. By the time I took my first pill I had worked myself up into a full out panic attack. I also am overweight, so far so good on that one, other then I think ive become obsessed with checking the scale everytime I go to the bathroom. My side effects thus far are nothing. My tummy is feeling better, although its still noisey down there.
My husband gave me some great advice with this. He reminded me that when I quit smoking a few years ago, I had to change how I lived. He suggested that I may think of treating this the same. Although Ive not started it yet, Im thinking that if I start going up in weight (my appitite is not increasing yet) then I am going to also form a new healthy habbit that causes weight loss. For me it will probally be to pull out that treadmill thats collecting dust.
The more I try to turn the negitives into positives its helping. But I must admit, I was blind to any positives until I was able to get over my panic.

Hope this helps,

Sherry
:rosette2:

 

[Shelbylou]

Hi guys.

Thank you so much for getting back to me. I do need to give it a go, but i'm just being a worry wart. I started with this flare in March and it took up to a few weeks ago to diagnose crohns. I have a barium xray soon, so they'll be able to see what's affected by the disease.

I'll start to take the medication and will keep an eye on the side effects. I think it's going to be a case of trying to snack healthily to satisfy the increased appetite and if there are any side effects, discussing them with my IBD nurse to see what she says.

Thanks again. feedback and advice is always very much appreciated

Big hugs :ghug:

 

[Shelbylou]

Just a quick addition to the above post, but is it likely that i'll get moonface after 3 weeks of taking 60mg and then tapering down by 5mg every week afterwards until I finish the dosage?

 

[Shelbylou]

sorry guys, I read the dosage wrong...or at least I thought each tablet was 10mg. They're not, they're actually 5mg so the dose is 30mg a day...doh!

I spoke to my IBD nurse for the first time today and she's alleviated a lot of my fears and so, here I am day 1 of pred and pentasa. So far the only side effects is feeling stupidly hot and sweating horribly.

Thanks again for your help

Big hugs

Michelle x

 

[Justme:)]

juduging purely on my own experience with the drug, the side effects will not be too serious or too long lasting since it is your first time on them (I just got off being on them for a second time and the side effects are staying with me much longer) also, you aren't on them for too long and the dosage isn't too high so I wouldn't worry too much. when I was first prescribed the steroids I was on 40mg for 8 weeks and after tapering off the side effects went away within no time. It will be a bit crap for a while but it is VERY temporary so don't worry about it!

 

[Shelbylou]

juduging purely on my own experience with the drug, the side effects will not be too serious or too long lasting since it is your first time on them (I just got off being on them for a second time and the side effects are staying with me much longer) also, you aren't on them for too long and the dosage isn't too high so I wouldn't worry too much. when I was first prescribed the steroids I was on 40mg for 8 weeks and after tapering off the side effects went away within no time. It will be a bit crap for a while but it is VERY temporary so don't worry about it!

Thanks Just you (sorry, couldn't resist being a wee bit cheeky )

It is only a low dose for now and hopefully it'll work. I do feel a bit better about taking them, though found a card in the box that I have to put in my purse just in case to say i'm on steroid treatment.

So far so good and thanks for putting my mind at rest even further about the side effects and hope that you're soon free of any lingering side effects and the symptoms that made you need them in the first place. It's not much fun feeling poorly or sick

Take care and big hugs xx

 

[SherryLynn]

Im glad to hear that your experience is about as nothing as mine was. I swear that sometimes our own fear is the worst!

Are your sweats lasting long? I just get about a minuite of it on occassion, not too bad. My brother gets some fast heartbeats with his, I havent had that yet. He says its not bad and doesnt last long.

Sherry

 

[Shelbylou]

Im glad to hear that your experience is about as nothing as mine was. I swear that sometimes our own fear is the worst!

Are your sweats lasting long? I just get about a minuite of it on occassion, not too bad. My brother gets some fast heartbeats with his, I havent had that yet. He says its not bad and doesnt last long.

Sherry

Hi Sherry

I've been feeling hot and very sweaty pretty much all day, so it's lingering on but the palputations or fast heart beat is something I get anyway after taking certain medication. The tramadol that the GI prescribed for pain does that to me so i'm not too sure whether or not it has something to do with those, but it only last a few minutes and it's not painful.

To be honest, I get hot flushes and sweats anyway round about that time of the month because I have PCOS so it exacerbates pre-menstral symptoms. It just feels like that even though I know it's not. I think my ceiling fan will be well used tonight lol

We'll be okay now, Sherry. Now we've taken the brave first steps of starting Prednisone, i'm convinced it can only get better from here (or at least hopefully).

:ghug:

 

[Astra]

Hiya Shelbylou

It's a love hate drug, and cos I'm a weirdo, I loved it!! lol
I felt so well and energetic on it, I just went with the flow. I started on 60mg and was on it for nearly a year, 2 years ago.
I've had a few blips, went on Entocort, but now I'm in remission, Pred saved my life!
Some tips, drink loads and loads of water, this will reduce the moon face, this is cos the moon face is fluid retention, as is the weight gain.
Also, no sodium or salt.
Take the Pred very very early in the morning, I took mine at 6am. This will reduce the insomnia effects you may encounter. If you do, just don't fight it, stay up, watch crap telly and go with the flow.
Same goes for the jitters, shakes, mania, euphoria etc. Deep breathe, go with it, they do pass.
FYI I lost all the weight, side effects within 2 weeks.
Good luck
xxx

 

[Catattack]

Hi again!

I totally agree with Astra...I love Presnisolone! I thought I was a bit weird (when u hear of people having so many bad effects) im currently taking 30mg a day..Ive been on them for three weeks and start to taper by 5mg a week starting tlmmorrow and I have to say I have never felt so brilliant in my life!..even to the point that i was a bit dissapointed when my consultant said i had to taper! Ive not had any increases appetite, my skin has never been better....glowing and spot free, im fully of energy, feel super happy and chilled all the time...Ithink im addicted! No moon face..no swollen anything. Just a tiny bit of weight gain (probably down to eating a lot of naughty things because I can and im not in pain anymore!) Soooooo overall Pred can be great....hopefully it will be for you!

 

[Shelbylou]

Catattack and Astra...HUGE HUGS to the both of you!

I can only hope I get similar effects as the two of you have had. So far i'm just majorly hot and sweating profusely, but nothing I can't handle.

The pain and problems in my tummy are still there, but i'm putting it down to needing to let it bed in for a couple of days....though I will admit, i'm sitting here thinking about going to bake a cake. I just have this craving for either cupcakes, or a victoria sponge...

Thanks guys. You've made my day! xx

 

[StarGirrrrl]

I started Pred for the first time a few weeks ago, and was pretty anxious about it I have to tell you.

Yes I have had moods, some weight gain (water weight), and insomnia, but knowing this is caused by the Pred makes it easier to handle. Last night I only had about 2 hours sleep, but I just found something to do and remained relaxed about it- lying there awake fretting wasn't going to do me any good or get me to sleep any faster.

I have noticed a few more facial hairs- but all you need to do is get some facial hair removal cream- five minutes and it'll be gone, mine was!

I took 30mg for 2 weeks, then tapering 5mg less for 5 days each, I am onto 20mg tomorrow. Ever since I started tapering it's going quicker and quicker.

Once the pills have stopped the side effect will go too, remember that!

The improvements in my symptoms weren't dramatic which has been a dissapointment, but I don't have a dx other than "inflammatory disease of unknown origin"- and from what I see on the forum I am the rare case of Pred not doing much.

 

[Catattack]

No worries, glad weve put your mind at rest! Yeah give it a good week to take effect, my tummy was a bit up and down for the first three/four days. It'll work soon

Xxxxx
p.s just polished off a mahoosive piece of lemon and white chocolate cake!

 

[Shelbylou]

I started Pred for the first time a few weeks ago, and was pretty anxious about it I have to tell you.

Yes I have had moods, some weight gain (water weight), and insomnia, but knowing this is caused by the Pred makes it easier to handle. Last night I only had about 2 hours sleep, but I just found something to do and remained relaxed about it- lying there awake fretting wasn't going to do me any good or get me to sleep any faster.

I have noticed a few more facial hairs- but all you need to do is get some facial hair removal cream- five minutes and it'll be gone, mine was!

I took 30mg for 2 weeks, then tapering 5mg less for 5 days each, I am onto 20mg tomorrow. Ever since I started tapering it's going quicker and quicker.

Once the pills have stopped the side effect will go too, remember that!

The improvements in my symptoms weren't dramatic which has been a dissapointment, but I don't have a dx other than "inflammatory disease of unknown origin"- and from what I see on the forum I am the rare case of Pred not doing much.

Hiya

Oh no! You haven't had a diagnosis yet? Hopefully they'll find out soon. I hope they manage to find you a treatment plan that works for you (and one with less side effects) to help ease your pain and other symptoms. It's no fun living with something that has the potential to knock you on your backside for months on end.

It doesn't sound like they side effects aren't too bad all round and to be honest, the insomnia i can cope with by watching DVD's or taking my lappy upstairs to keep my mind occupied. The facial hair I get anyway thanks to PCOS so maybe my symptoms won't be too bad lol. so far just one big ole hot flush to report. I swear, i feel like i've been sitting in the tropics all day, only without the clear blue sea, sunshine and nice cool pool to dip into :lol:

Big hugs and thank you. Hearing your experience with it has helped :hug:

 

[Shelbylou]

No worries, glad weve put your mind at rest! Yeah give it a good week to take effect, my tummy was a bit up and down for the first three/four days. It'll work soon

Xxxxx
p.s just polished off a mahoosive piece of lemon and white chocolate cake!

Phew! that's good to know! At least I won't walk around grumbling to myself about the medication not working, all the while eating a big ole piece of cake to ease my pain lol. People will think i've gone bonkers :dance:

Ooh lemon and white chocolate cake. I can't think of anything better than that! Tasty tasty. I've just made chocolate cornflake cake, but have to wait for it to set. It was quick and easy and'll be ready for picking at tomorrow. (though, come on! Lemon and white chocolate! that's just heavenly and only just surpasses marks and spencers lemon tart...oooooooh mmmmm)

I think there has been an increase in appetite, but I managed to stave that off with a bowel of strawberry, cherry and kiwi fruit salad after a rather healthy dinner of chicken and rice. Damn, that just sounds boring lol, but right now it's easy to digest.

:hug: xxxx