Off pred 10 days and feel terrible. Is this normal?

[Kerry]

I was diagnosed with crohnes in August and have been on prednisone since then. I started on 8 a day for a week then 7 a day, 6 a day etc down to 4 a day (20mg) and i stayed on that for 2.5 months. Then recently ive just tapered down 3 a day for a week, 2 a day for a week then 1 a day. Ive been off them for 10 days. The last few weeks on them i felt horribly bloated and uncomfortable, i never had the massive appetite that people said you get but i did feel the crohnes symptoms had finally gone.

But since ive been off them, especially since day 5, ive felt terrible. Ive spent the last 3 days in bed. Ive got sweats, full on diareah, i think there was blood once but im not sure, ive got no apetite at all so im dizzy, i feel nauseous.

I dont know if it the crohnes coming back or still the affects of coming off pred. The consultant said it would take 10 days to work out my system and im on day 10 now. Ive read elsewhere it can take alot longer to feel normal.

Im not on any other drugs. Im doing IVF late January and the idea was id be crohnes drug free to do that. Also im 37 and the flare up in August was the first.

Im feeling so down, xmas has been a waste of time as i havent been able to do much and i have to go back to work Tuesday. I just hate this waiting. If i go back to my consultant will she put me back on pred as i really dont want that?

Or maybe i should go on an immune suppresent. I hear some are OK with IVF.

Just seems like such a long road, a few years from now hopefully ill understand it and have drugs that control it but at the moment all i can think is i cant manage as it is.

Do you think the crohnes is back or thats its still tapering?

 

[SarahAnne]

It's really hard to say, I had a lot of the same symptoms when I was coming off the pred. Sometimes a really slow taper is needed to avoid some of the really awful side effects. I would ask the doctor if you continue to feel this way even after being off the pred.

 

[Kerry]

thanks SarahAnne.

How long do you think i should leave it before i see the consultant. I was thinking another week if i can stay sane that long?

 

[tiloah]

Prednisone is generally intended to treat acute inflammation. When you go off of it without taking anything else, there's nothing to keep it from just coming right back. This seems like an especially violent reaction to tapering off, I would talk to your doctor about it as soon as you can.

I hope you feel better. I feel like you should be on some sort of maintenance regimen, but that's between you and your doctor. I hope whatever you decide to do it works well for you.

 

[Pipergirl]

you may have to go back on it. when i was tapering off, i noticed my symptoms coming back and i was feeling miserable. my doctor put me back on it because he said i still needed it then. i dont know why your doctor said it takes time for it to get out of your system, i havent heard of that. hope you get it all sorted out!

 

[lynx]

I have read that people should taper off pred very very slowly it will decrease the withdraw effects. It also allows your own body to start producing the hormone to its full amount too. You may have to go back on it and then slowly decrease the dosage again. You will also have to take some other form of medication to help control the inflammation like Mesalamine or something else like was mentioned in an above post by diesanduhr.
When I was tapering off I originally was on IV steroids at the hospital then oral at around 80mg per day then tapered off to eventually 5mg per day and that took five months. A couple of times I had to increase the dose and then start to taper down again after the symptoms settled down.

 

[Kerry]

Well I came off prednisone Dec 21st so that makes it nearly 2 weeks. Alot of the symptoms have gone or nearly gone - the red sore face, dizziness, nausea, sweats, stomach pain, faint but im still left with no apetite. Ive tried to eat but when i do i have Diarea. Im not sure how its possible to have D when you eat so little but one of natures miracles i guess. I didnt even want to drink before but now i do so thats fine.

I feel a little bit light headed and not really with it but i assume thats because im not eating. Im back at work today and really want to go home and crawl into bed but need to make it to 5pm.

I tried calling my consultant but she is away until next week so im not sure if i should see someone else? Also i have a nutritionist booked for thursday and was thinking if he could give me a few cartons of this complete meal thing - its an alternative to the LOFFLEX elemental diet you might have heard of. I was hoping that would keep me going nutritionally whilst i give my stomach time to recover and get rid of the diarea.

Has anyone else any experience of either the LOFFLEX or being left with no apetite and D 2 weeks after coming off pred?

I really dont want to go back on steroids if i can help it. I know they work and i cant keep going like i am (i had to go lay in the loo for a few minutes in the office earlier at work) so i might be fighting a losing battle.

thanks

 

[tiloah]

I'm glad to hear you are dealing with less side effects. When I tapered off of Prednisone it lowered my (naturally low) blood pressure, which caused me quite a bit of dizziness. Certainly not eating could also be a cause.

I hope you get the rest straightened out. I have never tried elemental diets (other than having to live on Ensure when I couldn't eat solid food) so I can't comment on it. I believe research shows it to be a viable alternative though. I hope it works well for you.

 

[aboarna]

I've started with 50mg Prednisone/day and every week I taper off 5 mg of Prednisone. This is what my GI specialist advised me to do.
Now, I'm at 30mg Prednisone /day and I have good days when nothing happens and not such a good days when I have D. I'm wondering if the D is because of tapering Prednisone or just cause I'm introducing new things in my diet (like raw apples and pasta). I don't know, when I thought that everything will come back to normal, I have D from nowhere. it's not fair

I'm still accommodating myself with the Crohn idea, it's a battle everyday. I truly hope that soon, someone, somewhere will find something to fight this Crohn, and give us our life back.

 

[NICKYWORSLEY]

hi kerry, just reading ur story, i feel for anyone who has crohns especially when ur just diagnosed, uv not a clue whats goin on but u start to read the signs and start to understand ur body more... i still dont know what sets my flare ups of properly, for me it does seem be stress related but dont know for sure..its all trail and error for a while, anyway regardin ur problem, to me it seems ur avin signs of another flare up unfortunately..when i was first diagnosed i think i was on preds for about a yr till i started feelin better ....hopefully im wrong and ur just avin few bad side effects from comin off them. im on a liquid diet at min from avin a stressful crimbo, its set me off.. its first time ive done this but i get really depressed on steroids so im trying to avoid them and it seems be working, fingers crossed....anyway hope ur start to feel better soon kerry x

 

[Kerry]

Thanks Nicky. Im coming to the conclusion the crohnes is back. I did feel better the last 2 weeks on pred before the taper but as soon as i tapered i started to feel worse and worse but i was excited to be getting off them.

So after you were on prenisolone for a year have you been on it again?

When you have the drinks do they settle the flare up?

So many questions

I am a bit of a stressy type too so that could well be it. Im in the process of simplifying my life as much as possible. We were going to move but have decided to stay where we are. Keep the mortgage smaller and avoid the stress - our buyer pulled out last year just as i got sick with my first ever flare up ( i didnt realise it was that at the time). I also have 2 horses i dont ride. Ones sold and the other is about to be. My big problem is im supposed to start IVF in 3 weeks. Im already 37 and we made the appointment to start last year then i got sick and we couldnt so weve delayed now 8 months already and every month i delay the chances of success go down. And that is stressing me out and theres nothing i can do to stop that. I have told the IVF clinic i wont start now until February but i feel im holding my breathe for whether im ok for then and im so worried how ill cope with th whole IVF procedure and pregnancy. Ive lost all trust in my body. Not sure what i can do to remove that stress except give up on IVF but i dont want to do that. This crohns really sucks

 

[NICKYWORSLEY]

aww, its crap aint it, ive been on preds a few times, this yr was on from march to sept which is when i suffered a slight nervous breakdown, no one told me how these preds really affect ur body until i came on ere and read the storys...when i told my consultant how id been he just said,"oh, yes, they can cause u to av psychotic episodes after long term use", i could nt believe it, they didnt even warn me.

i dont know if ur from the uk kerry but i watched a program called Food Hospital and there was a girl on there with crohns and they put her on a liguid diet instead of taking steroids and it seemed work so ive tried it and its definately working...i started with some pain on the 30th of dec, straight away my hubs went out and bourght some complan drinks and some smooth soups, im gettin a bit fed up now but its definately worked, i ve no symptoms at all now .

Just realised i ve prob scared u off steroids but everybodys different with medication and obviously with the way i was last time i wanted to avoid them this time and im glad i did.

This site is great kerry...u try and explain to friends and family how u feel and its hard, even though they try they dont quite understand so its great to talk to people who know how u feel plus ive ad many times when ive needed to know something and theres been nobody to ask because of easter, christmas etc, u can come on ere and ask .

But try some sort of meal replacement drink, it cant do any harm cause its giving ur intestine a break and theres nothing irritating ur ulcers cause its just a drink.

Chin up..and keep in touch x

 

[Kerry]

well ive just been to my GP (im in Basingstoke uK) as i feel so terrible and my consultant is away until next week. She has given me 5 days of prednisone and some electrolites. Im seeing the nutritionist tomorrow for the drinks so i need to hold out til then to get the elemental drinks ( i saw them on th food hospital programme too). Hubby just got me complan and ive drank one. Maybe ill feel a bit better soon? im not taking the pred.

I think the pred could be dangerous for me because ive taken getting crohns very hard. im a real strong tough type who other people rely on and i never thought i would get sick. when im at my worst i want a one way trip to that clinic in switzerland. Maybe if i tell the consultant that she wont push the pred on me.

so ill wait for elemental stuff tomorrow - assuming he thinks it will help me - and go from there. just got to get through to tomorrow.

thanks Nicky. i hope it works for me like it is for you.

 

[NICKYWORSLEY]

i know exactly how u feel, since bein diagnosed ive been on and off anti depressants like a yo yo. Like i said before keep comin on ere kerry, knowing other people r goin through the same thing and can talk to u really helps....let me know how u go on tomorrow x

 

[Crohn'sFor Life]

You need a maintenance drug. I was on Asacol, Entocort, Imuran and Humira. In the end, I found that I was steroid dependent. Only the Prednisone stopped the flare-up.