Prednisolone Isn't working

[jackwhiting]

Hello,

Firstly I would like to say that I am new here I was officially diagnosed with Crohn's two weeks ago after being in and out of the doctors. I have been given medication of Prednisolone (40mg) and Asacol (400mg) daily plus Calcium supplements for the steroids.

Now. I've been having a horrid time really. The pred isn't working my symptoms are not subsiding and in fact i'm also getting a few side effects from the medication. I have developed insomnia, sometimes feel as I'm having mood swings, and the toilet habbits have not changed. I also feel tight and bloated a lot and hungry all the time.

My doctor said he wanted me to stay on them and see if anything changes, but surely there is nothing good happening with them yet? Has anyone been in the same situation? I am back in hospital on Monday and have been told that I could be given different medication.

 

[xSophiexx]

Give it time.. it may work it may not but from reading on here it does work for lots of people!
I started at 40mg too and have been up to 60mg and on an iv steroids drip and back down again and again and hasn't managed to put me in remission yet but that has been over 4months or so. give it time it may start to do something for u everyone different! and the side effects omg don't even go there lol. hope it starts to work for u soon!!

 

[jackwhiting]

The side effects are horrid already ha! I am not looking forward to when they taper it I've heard it gets worse!

I'll have been on them two weeks on Monday when I go under review by the doctor and hopefully something will be helping. As it stands I've only gotten worse since the medication!

No sign of remission in the horizon! Any particular bad side effects you've received?

 

[xSophiexx]

Well Im currently tapering down from 60mg at 5mg a week Im down to 25mg now and haven't noticed any new sides.. my doc just wants to get me off it now because its really affected mw badly going to put me on budesonide a less effective steroids that has no side effects.
Now for the list of side effects ive got.. brace yourself lol hot flushes, insomnia, 2 stone weight gain, moon face (look like i have a fake face), buffalo hump, stretch marks, constantly get the shakes, hairy arms lol, swollen joints the list is endless. now don't get me wrong if it was making me well id be fine and put up with it but it just ain't doing the trick for me.

Are you on anything else alongside the pred yet? they normally start on pred as a sharp shock to the inflammation and then get you on a maintanemce drug such as azathioprine.

Im fairly new to all this myself only diagnosed in may and the main thing ive learnt is this is a marathon not a sprint there isnt a quick fix unfortunately for us! also try and learn as much as you can so you can get best treatment! the nhs can be prettt useless and ive found knowing what Im talking about a bit more helps get the treatment you need.

 

[jackwhiting]

Well Im currently tapering down from 60mg at 5mg a week Im down to 25mg now and haven't noticed any new sides.. my doc just wants to get me off it now because its really affected mw badly going to put me on budesonide a less effective steroids that has no side effects.
Now for the list of side effects ive got.. brace yourself lol hot flushes, insomnia, 2 stone weight gain, moon face (look like i have a fake face), buffalo hump, stretch marks, constantly get the shakes, hairy arms lol, swollen joints the list is endless. now don't get me wrong if it was making me well id be fine and put up with it but it just ain't doing the trick for me.

Are you on anything else alongside the pred yet? they normally start on pred as a sharp shock to the inflammation and then get you on a maintanemce drug such as azathioprine.

Im fairly new to all this myself only diagnosed in may and the main thing ive learnt is this is a marathon not a sprint there isnt a quick fix unfortunately for us! also try and learn as much as you can so you can get best treatment! the nhs can be prettt useless and ive found knowing what Im talking about a bit more helps get the treatment you need.

Oh those symptoms don't sound great at all. I can say the hairy arms isn't a problem for me. I have cramps in parts and achey joints a lot though that one really is a problem. I wouldn't mind the weight gain to be fair as I've been skinny for a long time and lost a rather large amount of weight rapidly recently.

I have been taking asacol (mesalazine) at 400mg a day to. I'm presuming it's the steroids that is making me feel the symptoms more than the Asacol.

Is there anything you can advice to ask when talking to the doctors? I have been trying to read up but there is an incredible amount to get our heads round! I'm only four weeks down the line with a diagnosis and already feeling overwhelmed!

 

[karj]

Hi jackwhiting. I can relate to you with the prednisolone. i was put on a 40 mg dose of it too after getting a high dose in hospital a few weeks ago by drip. they sent me home on a tapering dose starting from 40mg and going down 5mg every 5 days. I am also taking pentasa. when they sent me out they also had me on predfoam enema and pentasa suppositories but then stopped those when they realised symptoms were not improving. I have had an awful bad reaction to the steroids this time, worse then before. blurred vision, anxiety attacks, shaking, insomnia, numb hands, burning lips etc. The only thing i have been able to control this time is the moon face but that is by totally depriving myself of anything with salt in it, or adding any salt to my meals. i still have a touch of a moon face but no way as noticeable. i am down to 25mg now and am just counting the days until i am off this blasted drug!! but i know it works well for others. From what I have read steroids tend to work straight away but i'm not expert. but if it isn't working now it is unlikely to work when you are tapering?? I think be assertive with your doctor, if your symptoms from your crohn's are not improving they need to look at other medications. I personally started remicade (have said this in a lot of posts now lol) am doing so well on it, and thank god have had no reactions or side effects as yet. I also had tried 6-mp and flagyl before and had bad side effects to those too. Prednisolone sometimes can have too many negative side effects on people. i know it is definitely a bad drug for me but I was willing to take it this time and put up with the side effects if it was going to help - but it didn't and then it just added all the bloody side effects to make me feel 5 times as bad! also my calcium dropped while i was on it. Also my crohn's syptoms increased, i was having really bad bleeding which doubled when i started the steroids. I think talk to your doctor about trying other alternatives.

Also start looking at your diet. I only really started to look at this in the last 2 weeks but i am noticing a big improvement. What I mean is I have cut out all bad foods such as greasy foods and foods loaded in sugard additives and am just eating all fresh ingredients, fruit and veg, salmon, turkey, lamb for dinner. baked potatoes, sweet potatoes. snacks of scrambled egg, or goats yogurt with fruit. Bought myself a juicer and make this juice of spinach, carrots, apple, parsely, cucumber/celery/ every day. Just basically being nice to myself and making sure i am getting the necessary nutrients from my food. my energy is going up bit by bit day by day. i also take floradix and udos oil. Aloe vera juice has been recommended by a lot of people so i have started taking that. I am also looking at introducing probiotics into my diet , at the moment i am just using yakult but i am going to try other things. I am also including pysllium husks with my breakfast every day. I feel i have to do these things to help my medication along and get into remission faster. Hope you start to improve soon.

 

[xSophiexx]

Hi Jackwhiting hope your feeling bit better now

here is link with few questions to ask your GI

http://www.crohnsforum.com/wiki/Questions-for-Your-GI?&highlight=questions+GI

I also asked who to contact in which situation.. for example if you get a new symptom is it the GI the IBD nurse or your GP you should contact, also what sympoms indicate an emergency, and just anything else that's been playing on your mind! I went in with a list just so I didn't forget anything - they're used to it and happy to answer most of the time!

How is the Pred going.. any change?

 

[Beach Living]

I am on my 6th day of 40mg. I am tapering down 10 mg every 7 days. I started feeling better stomach-wise right away. The first day I felt hopped up on goof balls. Now I am jittery and can't sleep. I had a script for xanex and it helps but is way less effective. I am going ask for more when go to the GI doc on Thursday. I am so worried about gaining weight that I have been working out more and eating as healthy as I can. The other problem is I'm unbelievablly hungry. Which makes eating healthy so hard. I am hoping the side effects are less as the dosage goes down but I also heard it gets worse with the taper. I also take asacol hd 4800mg a day. I think it's stronger then regular asacol.

 

[Bethanywrenboyer]

Prednisone never worked for me. EVER. it did not even touch me and I was on a high IV dose. The only medication that worked for me was remicade. Good luck with the steroids. I hope that they start to kick in, but if not maybe talk to him about trying remicade. It worked wonders for me.

 

[Ainy]

Hi All!

Jack I am in the exact same situation as you. Here's my experience so far.

I have been pushed from pillar to post by the NHS for 12 years and I finally gave in and went private in August and got diagnosed with Crohn's disease within 3 days. I was initially put on Budesonide and 4000mg of Pentasa. Within 2 weeks I saw no improvment so my gastroenterologist switched me onto Pred at 40mg tapering down to 0 over 8 weeks. I'm now into week 4 and have seen absolutely no improvements! In fact, I'd say my symptoms are getting worse! The extreme pain and running to the loo 8-10 times a day is wearing me down. Not to mention the side affects; tremors, feeling addicted, weight gain, no energy, acne, swelling, dizzy spells, palpitations, bruising. I could go on forever!

I have an appointment with my specialist tomorrow to get the results of an MRI which I'm certain is going to show more than the intitial 3 diseased sections of my small bowel that were found during a colonoscopy. I feel at my wits end! I can't handle these drugs anymore. The side affects aren't outweighing the benefits. At this stage I think I'd accept having to get surgery rather than continuing down this path for any longer!

 

[Beach Living]

Sorry to hear you aren't feeling any better. Prednisone worked really quickly for me and when I went to the doctor last week she told me to cut 6 days off the taper. I only have 7 days left. The hunger and restlessness has decreased with tapering but still are a problem. I haven't gained weight but haven't lost any either. I have been eating less then 1200 calories and working out. Not a pound lost since the prednisone. Hoping that starts to change next week when I done.

 

[Earnellzwifey]

Well I am also a recent dx CD pt. I have been on remicade for a unrelated disorder for 8 months so I am afraid it might not work for my CD. I am on a low dose so they are going to kick it up a notch first. so jury still out there.

I was put on 30 mg pred at dx and then I got a little better. Dr tried to drop to 20 and got bloody poo went back to 30 mg. after scope tried to go to 20 again and ended up relapsing again went to 40 mg. ended up in the hospital so now i'm on 60 mg. i think i'm cursed to stay on pred. I have already been on it for nearly a month.

My wonderful effects have been elevated blood sugars, hunger like no bodies business, insomnia, and hot flashes especially at night.

with all the ups and downs I am not sure if it really is the pred or am i just in a really major flare right now. anyway I did want to add congrats to all who have been able to eat the healthy foods and get away with it. I am on the low fiber diet so fresh fruit and fresh vegs do a major number on me. I actually think eating peanut butter and crackers is what landed me in the hospital.

Thanks to the pred hungers I ate like 20 of those things not realizing that it was like 1 gram of fiber in each one. Started vomiting bile a few hours later.

Also Jack have you had your vitamins checked mainly potassium and magnesium, they both can cause major joint pain and when my potassium got dangerously low from the D's I had a psychotic episode and my BP bottomed out causing me to faint by the time my hubby could get me to the ER. B12 is another one that can really effect your energy levels also.

 

[Ainy]

Well that's me just back from the hospital and my specialist seems a bit flumoxed! He now thinks I might have irretable bowel syndrome on top of the Crohn's which would explain why my symptoms are so severe even when I'm taking Pred.

He has said I've to stay on the Pred and Pentasa and he has added Tramadol for the pain (great, I'll be a walking zombie!), Mebeverine half an hour before every meal and Folic Acid. I've to try these for a month and if there is no improvement I've to have surgery to remove the diseased section. This is not something I want but he said it could potentially give me 5-6 years of relief so I'll just need to bite the bullet and go for it!

 

[jackwhiting]

Hello Everyone

Sorry it has taken me a while to get back, I've been a bit away from it recently! I've got such a love hate relationship with Pred, I've become so dependant on it my body feels worse when I come off. I've been moved from drug to drug and on Methotrexate now. Unfortunately I'm not sure if it's worth the side effects I'm experiencing, we will see.

I'm being tapered off pred once again at 1mg per week over 6 weeks. I'm currently on 4mg, reducing to 3mg tomorrow. More I come off it, more my body wants it.

Hope the metho works enough, so I don't have to shoot back up on the pred!

 

[jackwhiting]

Well that's me just back from the hospital and my specialist seems a bit flumoxed! He now thinks I might have irretable bowel syndrome on top of the Crohn's which would explain why my symptoms are so severe even when I'm taking Pred.

He has said I've to stay on the Pred and Pentasa and he has added Tramadol for the pain (great, I'll be a walking zombie!), Mebeverine half an hour before every meal and Folic Acid. I've to try these for a month and if there is no improvement I've to have surgery to remove the diseased section. This is not something I want but he said it could potentially give me 5-6 years of relief so I'll just need to bite the bullet and go for it!

Sorry to hear that. I also have a slight bit of IBS, hopefully not a walking zombie! Hang in there, it can only get better right!