My Story

[scoop1976]

Hi all.
Thanks god I found this forum. What great advice you have on here.
I have been off work now for 12 weeks suffering from diarrhea and stomach pains, and lost 2 1/2stone.
At first the GP put it down to gastroenteritis. After 5 weeks realized it wasn't the case and referred me off for a emergency colonoscopy. The appointment came through for 2 weeks. I was scared as this was the first time in my life I had been in hospital. They did the colonoscoy and took 12 biopsies and let me go home. The follow up appointment confirmed crohn's disease. I was told to look on the NACC website, take these tablets and come back in 6-8 weeks time.
I was put on prednisolone 20mg and pentasa 3000mg per day.
The pred was not kicking in so was put upto 30mg for 1 week and now I have been told to drop back down to 20mg. I am still going 5-6 times a day. I know this is not bad but I was 10 plus before, so something is working. My question to you all is:
When you lower the pred dose, do the symptoms come back?
Will I be on Pred forever?
Does pentasa work for you?
Why are mornings so S****
As this is my first flare up, when can I return to work?
Any advice on coping gladly excepted.
Thanks for reading.

Scoop

 

[Lydia]

Pentasa never really worked for me.

I have only need pred for a few months at the most. I just used it for acute flares. If the pentasa isnt making you feel as good as you want to feel after the 6-8 weeks then tell your doctor.

You can return work work as soon as you feel you can do a days work without your crohns interfering too much. Return too soon and you'll just be taking a bunch of sick days.

 

[Dustin]

Hi scoop, and welcome.
To try and answer some of your questions, it is quite common to experience symptoms coming back when weaning off prednisone - usually if you bump it back up to the previous level, the symptoms go away again (at least in my experience). Do not be tempted to stop cold turkey though, as that can cause liver damage.

You will not be on prednisone forever - usually I get put on it to get symptoms under control until a long term drug can take effect, then get off prednisone as soon as you can - the side effects can be horrible.

I was on pentasa for a while a long time ago, but it didn't work for me.

I have no idea why mornings are the worst... I think it's just a matter of my mind disregarding the pain over the course of the day, so it doesn't seem to bother me quite as much over the course of the day.

As for when you can return to work, take your time. If you rush back, then you won't have given your body time enough to recoup.

Good luck, and good health.

 

[Astra]

Hi scoop
and welcome

Yes I agree with the others too, Pred does it's excellent job for a few months during a serious flare but hard to get off, I started on 40mg in January and have managed to get down to 10mg this week with no D or pain, yet!
I think the secret is to taper very slowly by 5mg every 2 weeks, as regards to Pentasa, I've been taking that for 5 years but during a flare, it's no good on it's own, it needs a back up! but it's ok as a maintenance drug if you've no symptoms.
When I got my dx, this is what my gastro said to me, that when we sleep, our bowels sleep too, thats why we dont poo the bed!
So when we wake, so do the bowels, and that's why mornings are so bad! I believe that the earlier I wake up, the quicker I can get it all out of way before work! Routine is important for me, or I can't cope!
lotsa luv
Joan xxx

 

[ameslouise]

Hi Scoop and welcome!

You'll learn a lot by reading the posts on this site - there is lots of info on Prednisone, side effects, weaning, etc. And you'll find that some meds work for some people and not for others. It may take a while to find what works for you.

Hope you start to feel better soon! -Amy

 

[scoop1976]

Hi all
Thanks for the replies. You have all made me feel so welcome and much better knowing that I'm not alone with this. A lot of people don't seem to want to talk about it or have no understanding what it's like. I'm back up to 9 times today, but am back at Gps on Monday so will give him a kick up the a*** regarding the Pred, as 20mg just isn't working.
Thanks again for listening to me moan on.
Any other advice is more than welcome.(you seem to know more than my GP!!!)
Enjoy the weekend peeps
Thanks Again
Scoop

 

[scoop1976]

Hi All
Have been back to GP and he is disappointed that the Pred has not kicked in yet and has put me on budesonide. Don't know much about these drugs. Is this better than Pred? He has left the Pentasa at the same dosage and has asked to review me in 2 weeks. I have been signed off work for another 2 weeks.
How many of you are able to work/hold down a job?
How long was your first flare up?
How long does remission last?
Sorry for all the questions but am scared and confused.
Scoop

 

[Astra]

Hi scoop

I'm a bit surprised that the doctor didn't up the Pred to 50mg and then told you to taper down by 5mg after a month at this dose, thing is, GPs aren't the specialists in IBD, neither am I, but the high dose of Pred stopped my flare dead in its tracks, and now i'm on 5mg this week, its took 3 months, and I'm really well.
When I've read your earlier post, - 20mg for one week, then up to 30mg, then down to 20mg, this wont work, you need at least a month on a high dose to blitz the inflammation. Then taper down slowly, by 5mg each week, thats the secret.
You won't be on it forever, just 3 months maybe, and any side effects will be worth it, its a small price to pay for no pain!
Budesonide, whilst a steroid, it is milder than Pred, and is a glucocorticoid, rather than a corticosteroid like Pred, and not as tough on your bone density, and there's no need to taper down from it neither.
I was on Budesonide a few years back and it did diddly squat for me.
I work full time and manage, but during a flare, I'm neither use nor ornament! so I stay off, til I'm better, but I get paid SSP, and a lot of people don't, do you?
If you're flaring really bad, you need that time off to heal and rest.
Remission? now there's a question! Who knows, its so unpredictable, I think I'm in remission after 3 months of Pred, but could flare up at anytime, especially once I hit zero next week! Dunno.
My advice? Try the Budesonide, give it a time limit, say 2 weeks, if there's no improvement, ask about upping the Pred to 50mg, and start again with that, it does work, and has fantastic healing properties
Try to relax too, stress will exacerbate your Crohns, use these 2 weeks off to chill.
dont be afraid, any questions, just fire away.
xxx

 

[scoop1976]

Hi All
Thanks for all your advice, it is much appreciated. I am still taking Budesonide and it is still not having any affect. Since I stopped taking the Prednisolone I am back up to 7-12 times a day. is this normal? Does this mean that Budeoinide is not working? Should I ask to go on a higher dose of prednisolone? (I was on 30mg for a week then down to 20mg for a week and so on).
Sorry for all the rapid fire questions but am desperate now. Any advice gladly received.
Thanks for reading.
Scoop

 

[Hedgehog]

Hi Scoop,
I'm with Joan on the Pred advice. I think you need a high dose for a few weeks then a very slow taper. It sounds as if the Pred was working to some extent but you do need to get it completely under control before tapering down. I'm tapering only 2.5 mgs per week. I tried to taper in 5mgs drops and I relapsed.
Gail

 

[phillycrohns]

Hi Scoop:

Pentasa worked as well as all the other meds that I have been on for my Crohn's. As everyone has said, how meds work for one person will not necessarily be the same for the next person. Pred has worked for me, but my doc is reluctant to prescribe it.

I remember being as afraid as you are now, so I really feel for you. But you will be ok, especially here on this forum. You will learn alot about different ways to manage your disease and will get lots of support. My advice is research, research, research! Be well informed and ask lots of questions of your doctors.

Hope you feel better soon!
Chris

 

[Astra]

Thanks Gail
Yes scoop, go back and read what i wrote on 12th April
I'm off the Pred now and I think I'm in remission, I feel really well and I'm going back to work next week, been off 3 months, but I needed to, to heal.

 

[scoop1976]

Hi All
Phoned the doctors today as am still feeling no better and couldn't make it for an appointment. Asked to be put back on the Pred and asked for the dose to be increased (as per Joan's and several others good advice) only to be told to go back to 20mg for 2 weeks. I have booked an appointment for Monday and am going to plead with the doc to try a higher dose as i am still going 8+ times a day and am really sore. Did anyone else have problems with doctors prescribing high doses of pred? Will keep you all posted.
Thanks for all the replies and support, so glad I found this site.
Scoop

 

[Hedgehog]

Hi Scoop,
Do you have a gastroenterologist who is managing your care? I got my GP to ring mine when I needed to get him to prescribe the Pred. I think maybe some GPs are reluctant to prescribe it without the consultant's say so. Or maybe you could ring your consultant's secretary at the hospital and ask if she/he could write you a prescription?
You've gone a long time feeling unwell. They need to get you some relief from this.
Gail

 

[Astra]

Hi scoop

Yes I agree with Gail, cos this happened to me, so I phoned my consultants secretary and she spoke to him, she phoned me back, and I upped the dosage without the GPs say so.
The secret with Pred is higher dosage from the off to blitz the inflammation, 20mg wont touch the sides
good luck, scream if you have to, or tell em you're getting an ambulance!!

 

[scoop1976]

Thanks Gail,Joan
You both sound like you too have been through some S*** if you'll pardon the pun.
Thanks for all your advice. I am going to give the hospital a call in the morning and explain the situation to them and like you say maybe I should go to A+E via ambulance.
Sorry in advance for the personal question, How many times a day is normal for Crohn's. I know this sounds like a how longs a piece of string but just an estimate.
Thanks Again
Keep you posted
Scoop

 

[Hedgehog]

Hi Scoop,
I haven't really had terrible diarrhoea - more pain and weight loss. The most I've gone is about 3 or 4 times in one day. But that's because I have Crohn's in the small bowel. I think frequency varies depending on where the inflammation is. But you're going way too much, that's for sure! Keep on at 'em!
Gail

 

[scoop1976]

Hi all
Have been on the phone to hospital and spoke to my consultant. I explained the situation to him and he has suggested that I up the Pred to 40mg for 4 weeks. If it is no better when I see him in May he wants me to have scans/xrays done.
Fingers crossed that the Pred kicks in.
Thanks again Joan and Gail for all your advice and support.
Scoop
xx

 

[Astra]

Excellent news scoop!
Let us know how you get on, 40mg of Pred should start to work quickly, keep at it for a month tho, any questions on Pred, we're here for you! Pred experts!
good luck
xx

 

[scoop1976]

Hi all
I have received a new appointment to see my consultant next Friday as he is concerned. Should I be concerned that he is?? The Pred has kicked in and reduced me to 6 times a day with less urgency. Yesterday I felt great, full off energy, today I feel really tired,weak and spaced out. Is this normal with the Pred? Cos I feel terrible.
Sorry to rant on

Thanks
Scoop

 

[Astra]

Hi scoop

On high doses of Pred you will be wizzing and speeding, full of energy! But, as a result, you'll hit the deck too! Pred masks symptoms, so you'll think you're well enough to do all sorts! And Pred can cause insomnia, so in order for your inflammation to heal, you really need to rest.
Yes it gives you a spaced out feeling too, just give it time to do it's work, it's a bit scary at first, just chill and watch movies, TV, whatever, but rest is crucial.
Try not to get anxious why the doc is concerned, I would see that as a positive, cos it means something is going to be done sooner rather than later!
chillax! xx

 

[scoop1976]

Hi Joan,
Thanks for getting back so quick, your a star. I was a bit concerned how quickly I went from feeling full of energy to zero energy. Your reply has put me at rest as now I know its common. Have you ever suffered with depression regarding your Crohn's? As I feel really down at the moment and have been on anti depressents for 18 months, as I have quite a tough life with my son who suffers with autism and has been tube fed for the last 3 years. so this is all I need.
Thanks
Scoop.x

 

[Astra]

Oh god
that's so heartbreaking scoop
I teach kids with Autism, and whilst I love them to bits, they are hard work and very challenging!
Yes, I've had many years of depression too, dark places that I never want to visit again, and was on tablets too
If you've been on them for so long, time for a med change? go and speak to your doc about it.
hope you've got some help too for your son, some respite? The NAS are great, they could offer some respite too,
PM me if you need to talk, dont suffer in silence
xxx

 

[Hedgehog]

Oh Scoop, hope this msg finds you feeling better. You're having a hard time of it at the moment. I'm glad the gastro is going to see you quickly - if they don't hear from you they think you're hunky dory so it's good that s/he is going to get you sorted.
I felt great on the Pred. Full of energy. I'd been so poorly for yonks it was a great relief. I've been depressed too. I think it's natural when you're physically ill especially when it drags on. It's an anxious anxious time and I don't think people can understand unless they've been there. You are doing so well and you will get there in the end. You just need the proper treatment.
I haven't any experience of autism. But I can imagine that it's hard to cope at times even when you're fully well so it must be doubly hard when you're so poorly. I'm keeping everything crossed that you get fixed up and back to feeling normal again really soon. Keep us posted,
Gail
xxx

 

[ameslouise]

Hi Scoop - Jus wanted to chime in and offer my moral support. Glad you got the 40 mg of pred - it will help a lot! And the sooner appt with the doc - all good things.

Sorry to hear you're feeling down. It must be overwhelming to care for your son and also care for yourself. Bu you must try to take care of yourself so you can be there for your son! As they say on the airplane - affix your oxygen mask first, then assist others.

The pred can be tough on emotions, too, and can add to the depression. I started taking Celexa and it has helped. I find I am more depressed as I taper than I was at my full dose.

Keep us posted and please know we're all pulling for you!

-Amy

 

[Entchen]

Welcome, Scoop! No info or advice to add, but you're in good hands -- the others are true experts (I'm just getting started. :ybatty: )

 

[scoop1976]

Thanks for all your replies. I am feeling really down at the moment but all the positive replies really help.
Thank you all so much.
scoop.xx

 

[scoop1976]

Hi all
Was back to see consultant on Friday. Still going 6+ times a day (even on 40mg of pred). Had X-rays done and he has told me if the 40mg of Pred doesn't kick in by the end of next week, he wants me to go into hospital to have my medication administered via I.V. Is this normal? Am quite worried now, as have never been in hospital.
Any advice welcome
Thanks
Scoop

 

[Astra]

Hi Scoop

sorry you're still feeling rough. don't know about normal, but I got the IV steroids in hospital but it was hydrocortisone not Pred. And i felt better immediately.
Don't fret about being in hospital, you'll be in safe hands, especially if you start to feel worse
good luck, hope the Pred kicks in
xxx

 

[Nyx]

Just wanted to put my experience in here too...

When I was first diagnosed, I was put on 40mg of pred for 4 weeks, then tapering down till finished. The 40mg didn't do anything for me either. Then they upped me to 50mg for 2 weeks, and I felt a bit better. Finally, the doctor put me on 60mg for 6 weeks, with a 5mg taper every 2 weeks after that. That finally did the trick! Maybe ask your doctor to up your dose of the pred...it might help. Made me crazy manic though....lol Oh, I also started Imuran while still on the pred since it takes about 3 to 6 months to kick in.

Hope you get to feeling better soon!

 

[mspaghettio]

Hiya scoop. I'm so sorry to hear all your sad news, but I hope you can find small victories that get you through each day. I haven't had quite the same symptoms and I've never taken pred, but I can tell you some things that have helped me. I found that I felt worse when I was stressed or anxious, which I know is impossible to avoid, but try to help yourself relax when you feel tense. Some things that works for me are scented candles and deep slow breathing, herbal tea, prayer, or reading. It's not going to heal you like steroids but it's worth a shot!
I agree that you may want to watch your symptoms and see if they are better or worse when you eat certain types of foods. Everyone's different of course, but like for me I feel awful if I drink coffee or eat a lot of sweets. When I do eat something that doesn't agree with me I find a heating pad on my belly helps a great deal.
It's gonna be the hardest at the beginning when you don't know what's going on and you're scared and you don't know what medicine will work (I'm still trying to figure that one out!) but just try to be patient and keep your spirits up! It may take a little time but you'll get to feeling better.
Oh and try not to worry about being in the hospital! Just relax and know that there a ton of people around who just want to do whatever they can to make you feel better, and you don't have to worry about being alone to deal with it!
Melinda

 

[scoop1976]

Hi all,
Well have been on 40mg for 2 weeks and am now down to 35mg and am still going 5-6 times a day, I have no energy what so ever. Don't know what to do. Is that normal? I have asked to be put on an elemental diet but my consultant didn't seem very keen on this. I am desperate to stay out of hospital. My question to you all is: How many of you found that diet played a big role with your Crohn's?
If so what was your worst food/drink?
Thanks for taking time to read this.
I really am scared/lost.
Scoop

 

[Hedgehog]

Hi Scoop,
Sorry the Pred still isn't working. Is your gastro going to try anything else? Have you thought about asking your GP to prescribe the Elemental? My gastro said my GP could prescribe it for me for bad periods, though I think some don't like to allow this without the supervision of a dietician. But I know how desperate you are....might be worth a try. You can also buy the elemental on the internet but it's expensive.
Gail

 

[Astra]

Hi Scoop
thinking of you at this difficult time, don't know what more to suggest, wouldve thought the Pred would have worked, I would be inclined to phone them again and beg for help,
The only thing that plays havoc with me is curry and Chinese food, or fried stuff.
When I have a lot of D, I just go on the low residue diet for a few days to give everything a rest, works for me, and drink loads of water too. I dont drink alcohol anymore, it's not worth the hassle.
Have to agree with Melinda, try to stay calm, hard I know, but anxiety will make you go to the loo more, viscious circle,
take care
xxx

 

[scoop1976]

Hi all sorry it's been a while. Haven't been to good, I have seen my specialist and he is concerned that the Pred has not kicked in and that the Pentasa is not doing it's job. He has now taken me off Pentasa, kept me on the same dose of Pred (20mg) and am now on 100 mg of azathioprine. I was warned by specialist that it is not a nice drug and have to have blood tests every 2 weeks. Is this normal/good???
I am really confused now.
Thanks
Scoop

 

[DustyKat]

Hi Scoop,

Yes it is normal to have blood tests every 2 weeks because it works by depressing your immune system, so they need to check it doesn't depress blood cell production too much. My daughter has been on a maintenance dose since her surgery 4 years ago and initially she had blood tests weekly, then fortnightly, then monthly and now every 2 - 3 months.

Hope that helps.

 

[Astra]

Hi scoop

good to hear from you again
hope you'll be ok with aza, I was allergic to it after 3 months,
sending big hug your way
lotsa luv
Joan xxx

 

[Barbie]

Hi there scoop,

I was just reading through the thread and thinking what an awful time your having. Apparently I read somewhere your first flare up is usually the worst for most people, I think more beacuse of diagnosis times and finding treatment which works. so hopefully the only way is up for you. So sorry to hear pred hasn't worked. Ive been in hospital quite a lot over the years with bad flare ups and they have given me 2 weeks IV hydrocortisone and then put me back onto the tablets. This works really well for me as it gives my body a kick start and then the tablets do the rest. Im so sorry it hasn't had you feeling completely better. As you have probably discovered by now as you reduce the pred you can find that symptoms back and its about reducing it slowly.

I am due to start budesonide and hoping it works for me and also to restart azathiaprine. I was on azathiaprine about 6 years ago for 2 years and I didn't have any major side effects really apart from being sensitive to the sunlight. I am also on pentasa all the time whether I have symptoms or not. Everyone is different with all medication and unfortunatley it seems a game of trial and error but hopefully you will find something which works best for you.

As for work, it doesn't sound like you have found a drug for you yet and I wouldn't rush back. I know that is really easy to say but sometimes you do need to take time out and let the drugs work their magic.

Please don't be scared of the hospital if you have too maybe some intravenous drugs will give you the boost you need and then when you swap back to the tablets you will notice a difference? Like Astra said you do feel better pretty much straight away on the IVs also.

So sorry your having such a hard time but glad your finding comfort in everyone's advice and support. It's a wonderful place.

bug hugs,

xx

 

[sunflower]

Hey scoop! Hope you are doing better. If not, a stay in the hospital may help you tremendously! You rest, you get fluids, a great diet of Jello (do you have that in the UK?) and rest. The IV steroids don't give you as bad of emotional side effects as the oral Pred does, but your face may get nice and round!

Depression is a NORMAL side effect of having a serious chronic illness. That being said, you don't have to put up with it. You should take meds to help you control it. There is no reason to feel really bad when there is medicine out there to help you. It is not the blues, but a real physical reaction to the stress your body and mind have been under. You can't help it, and if you ignore it, it won't go away.

I was off for a long time at first, too. Your body really needs to heal. Lots of times we are sick for a long time before our symptoms are bad enough to seek medical care and stay home from work. It takes a long time to get better, too.

Eat lots of protein, it will help you heal. Eggs are excellent if they don't give you too much gas! LOL!!

I hope they can get you controlled soon. You will feel better. I am on Pentasa and have been for years. It works great, until it doesn't and then I need Pred.

 

[Aussie]

Hi Scoop,

It sounds like a short stay in hospital might be reasonable, IV hydrocortisone (100mg four times a day) is equivalent to around 80mg a day of prednisone. This might be enough to get on top of your Crohn's, then you can taper the oral dose down to zero over around 3 months.

It will take around 8 to 12 weeks until the azathioprine kicks in, and then you should hopefully nearly be off the steroids. Most people on azathioprine will need around 4 blood tests per year once it is stable.

Just make sure that you have been investigated for other causes of diarrhoea as well, which is much easier to do when you are an inpatient.

Also, prednisone can make you feel depressed.

 

[belle1999]

Yeah, I took aza too. I got lab tests every two weeks until my white cell count got dangerously low. They took me off aza because of that. I had labs every two weeks for a while after that. I am now going to once a month.