New to Crohn's

Hi Everyone!

I think this discussion forum is great! What a fantastic way to see the different ways people deal with Crohns. Myself, after living with terrible stomach cramps and weight loss over the last year I went to my GP and basically had every scan under the sun done, visited natropaths, had a gastroscopy etc. I have recently had a Colonscopy and was diagnosed with Crohn's. They couldn't complete the colonscopy as my large intestine was so ulcerated they couldn't get the camera thru! I was put straight onto Prednisone 40mg per day then gradually reduced it by 5mg per week until I was down to 0mg. Each week of reducing it I noticed my stomach pains coming back again so went back to the specialist who then put me on Azathioprine and Asacol. I have been taking these for about 3 days and have had very sleepless nights! I do realise they take up to 12 weeks to start working but my pain has been almost unbearable! My body feels weak, I have lost my appetite, feeling hot and cold etc. Has anyone else tried these new tablets which I am on? If so, did you take Prednisone aswell? Is there anything I could possibly take for the pain relief? It is so depressing!! I dont think I can possibly wait out the 12 weeks until I start feeling some relief....

hi & welcome lees. i cant really advise on the meds issue, as despite having had crohns for over 20 years, i have only recently dabbled in the prednisone and asacol fields, and at the moment am not taking either.

however, i would say that if your pain is unbearable, it may be an idea to tell your specialist. like you say, 12 weeks being in such pain and discomfort is not a nice prospect. maybe there is something else they can give you to help the pain while the meds are kicking in.

Hi Lee, welcome to the forum. I've been on pred, imuran (aka azathioprine) and a form of 5ASA, Salofalk.. which is similar to asacol. When I started imuran, my GI timed it so I was just coming off the pred as I started to ramp up the imuran. That probably helped. It does take a while for the imuran to kick in so you feel better. you may need some form of pain relief from your doctor to tide you over. If you do suffer from constipation, then just be careful of the amount of codiene you receive. It can make matters much worse. Talk with your doc. I wish you luck with the imuran.. it didn't work out for me. As for the asacol, that drug in various brand names/configurations (pentasa, asacol, salofalk) is used by a lot of folks on here. It's no miracle drug, just an antiflamatory buffered so it reaches the GI tract. Take it with plenty of fluids so it gets to where you need it most. You won't notice any great pain relief from it, it's just not designed for that. Check the manufacturers website for up to date info on the best way to take it, and how to deal with any common or potential side effects (usually very minor). It's just a "safe" drug (aspirin) intended to reduce, but not eliminate, GI inflamation. Anyway, chin up. You aren't alone. Everyone here is pretty much in the same boat. Feel free to spout off, vent, rant N rave, whatever, OK?

im on pentasa (asacol) azathioprine and prednisolone at the minute and know what you mean about the sleepless nights! i think my GI's are planning to do what happened to kev, start to decrease my preds (currently on 15mg) and beef up my azathiorpine(currently on 50mg) at the same time. ive found the pain almost unbearable when i drop below 15mg of prednisolone so hopefully the larger dosage of azathioprine will counter that as i slowly begin to decrease the preds. if you are in so much pain i would definately suggest to your GP going back onto the steroids as i know there the only thing that has stopped me being in agony most of the time.

best of luck and this forum really is great!!

Hi Lee. I've been on Asacol about 5 years now, seem to remember them mentioning side effects when I started on them but I've never had any trouble. I started Azathioprine recently though, over the summer. Can't say I've noticed any effects from it yet but I know its slow to start.

I am on 50mg of Azathioprine a day. I use to be on 100mg before I started getting Remicade. The mixture seems to be working very well.

I have been down the predinsone and pentasa root. At the time, I don't like taking either of these drugs (I didn't take these at the same time). They both actually made me feel worse. I don't know if it was the mixture of drugs or if it was the drug itself. The prednisone always made restless, hot, hungry 24/7 (which made me gain 20 lbs in two months) and the pentasa made me feel bloated all the time. After awhile, you just can't take the said effects and I asked for my doctor to try something different. And that is when I ended up getting Remicade.

People often ask this question about pain. The only thing I can suggest is that you request to be placed back on prednisone until azathioprine has a chance to kick in. I only say this because I assume the prednisone kept the pain away. Many doctors keep you off of it due to the awful side effects but if it's a temporary fix, why not!

Lees. I am also new to Crohn's disease and right now, I am taking Asacol. When I was first diagnosed about 6 months ago, they had me on prednisone, Asacol and two other drugs. They started to taper my prednisone by the week and I was soon off that, but as they tapered, They added more asacol. Asacol seems to be working for me at this point and hopefully when I visit my doctor tomorrow, they will taper the asacol a little bit.
My side effects with prednisone included restless nights and unbearable night sweats and muscle spasms. I would wake up in the middle of the night with the worst muscle spasms known to man. I think my body was starting to get used to prednisone because I was on it for 6 months before I was diagnosed. They couldn't tell what was wrong with me because all my symptoms were backwards.

Anyway, I hope this helps ... good luck

Yes I am very well aware of the sleepless nights. It is 4:30 in the morning and I just got through having to get up and make me a hamburger. Eating and staying awake and becoming very moody thats what Prednisone does to ya. But it also makes my flare ups go away, so you have to take the good with the bad. I am also on Remicade now too though, and I am down to 20 mg. on the Pred.and tapering down by 5mg. each week, so hopefully after I get off it this time the Remicade will keep me from ever having to be on Pred. again. I wish you the best of luck in your fight and like was said before, you are not alone.

Hey r_cronier... you got up at that hour of the morning, and ate red meat?? WOW
If you can survive that, you can pretty much survive anything. Or are you one of those fortunate ones who can eat pretty much anything without it killing your gut?

Even on prednisone, that's pretty impressive getting up at 4 in the morning and eating a hamburger.

I've been more than once on all these meds (Prednisone, Imuran, and Pentasa) as well as antibiotics and antiacids!!!!! I was like a walking pharmacy; and taking them together will cause lots of side effects which hopefully subside after you reduce the dose.

You have to know that Imuran (Aziath...) takes about 8 weeks to start working, so if you are in pain you should ask your doc if he will get you back on Prednisone till the Imuran kicks in.

Also don't forget to have regular blood tests while on Imuran as it can be toxic and cause liver damage.... Good Luck

Hi lees. welcome to our family world. I wish you all the best. And I hope you get ride of your pain very sson.

Kev said:

Hey r_cronier... you got up at that hour of the morning, and ate red meat?? WOW
If you can survive that, you can pretty much survive anything. Or are you one of those fortunate ones who can eat pretty much anything without it killing your gut?

Click to expand...

HAHA yeah, probably not the wisest thing to do, but when I wake up and can't go back to sleep because I am hungry, then I make whatever I am craving so I can go back to sleep.

Hello there!

I'll just start with a little history of my disease so you can get clued up. I was diagnosed in July after 5 years of mis-diagnosis with pernicious anemia and 'IBS'.

I was initially put on a 6 week elemental liquid only diet as i was only 19 and they treat my disease like a childs and didn't want to put me on steroids. I started introducing foods and by early October my colonoscopy showed no improvement in the inflammation so they put me on 50mg of azathioprine. By early November i was still in so much pain i was taken to AE.

That was now two weeks ago and they put me on IV steroids for a week and i have been on 40mg of oral prednisone ever since. They also upped my azathioprine to 100mg. I am currently feeling better then i have felt in a long time. I was so mal-nutritioned, fatigued and in pain before so the minor side effects (for me) from AZA and PRED are worth it.

I am actually starting to taper down tomorrow by 5mg per week as the doctor is wary of me being on pred for longer than 8 weeks but by the time im off it by aza should be fully working. (lets hope).

The main side effect i have experienced in constipation which is odd as i was going VERY frequently before all this medication. But i am also on a low-fibre diet (NO FRUIT OR VEG AT ALL) which doesn't help. I normally have a couple of movicol's throughout the day to help me along.

It seems the Prednisone really does keep the pain away, i would suggest going back on that and slowly tapering off until the azathioprine has a chance to work (can take up to 12 weeks). I haven't experienced many other side effects on pred other than a slight increase in appetite but i expected that as i was afraid to eat before because of the pain. I also have a little bit of back acne and a puffy face but it is 100% worth it not to be in pain!!!

I hope all goes well and you get respite from your symptoms soon.

Sadiesweeet said:

.....
It seems the Prednisone really does keep the pain away, i would suggest going back on that and slowly tapering off until the azathioprine has a chance to work (can take up to 12 weeks). I haven't experienced many other side effects on pred other than a slight increase in appetite but i expected that as i was afraid to eat before because of the pain. I also have a little bit of back acne and a puffy face but it is 100% worth it not to be in pain!!!

I hope all goes well and you get respite from your symptoms soon.

Click to expand...

Definitely want to check with your doc about bumping up the predisone dose. Tapering off Pred is not always a straight shot down, sometimes it's two steps down, one step up, two steps down again. Pred acts quickly though, so that's the good news. The pain is awful- we can all relate too and we all hate the Pred- but hate the pain more. Hope you're feeling better soon!

Wondered if anyone could shed some light. I was on 4omg of pred for two weeks and tapered down to 35 last week. I am due to taper another 5mg today but last night i was in lots of pain with stomach ache and i could feel the same type of pain i was on before the pred (but no where near as bad). I need to contact my doctor but its a weekend as i dont want to taper down again if i am getting pain, but dont want to up it without my doctors consent...

Sadiesweeet said:

Wondered if anyone could shed some light. I was on 4omg of pred for two weeks and tapered down to 35 last week. I am due to taper another 5mg today but last night i was in lots of pain with stomach ache and i could feel the same type of pain i was on before the pred (but no where near as bad). I need to contact my doctor but its a weekend as i dont want to taper down again if i am getting pain, but dont want to up it without my doctors consent...

Click to expand...

I've gone back up in dosage without my doctors consent before, and he was fine when I told him about it. It was on a weekend and the answering service is not authorized to call about medication changes, so after I was experiencing some problems the next day I went back up to the level I had just tapered down from. Felt much better. Nothing wrong with going back to that level and letting your doctor know.

Of course nobody wants to change their medication dosage without checking with their doctor first- that's their job. But I can't do that on a weekend which to me, is total B.S. If you don't do anything and the pain gets worse you'll just end up in the ER- which could easily be avoided if the doctor got back to you. I doubt the doctor will pay your ER bill, so the choice may be a clear one.

This happened to me in August. I had just tapered of Pred completely and on Saturday I was starting to feel that unholy pain again. Toughed it out all weekend and called the doctor's office on Monday. Friday and Monday are my doctor's days off and all the office could do is take a message and give it to my doctor "if" he calls in that day. They said my doctor would call on Tuesday. Tuesday came and no phone call. I called in the morning and left a message. No call back, so I tried again at just after 1pm and got voicemail saying the office is closed for lunch until 1:30pm! I gave up and went to the ER as the pain was too much.