Tapering off prednisone and not feeling good and advice about pain killers

[Tim]

So I'm coming off my first round off prednisone after my first major flare that resulted in my diagnosis of crohns only just this year. I was put on 50mg for a few weeks and started feeling a little better and regained my appetite and put back on some weight after losing13 kg (28-30 pounds for those in US). Anyway I've recently gone from 25mg to 12.5mg a day and in the last few days having started sleeping alot more and become way less hungry. So i spoke to my GI and he said to go back up to 25mg. My only problem with that is i dont like the side effects and don't wanna go back up to higher doses of pred unless absolutely necessary I also take sulfasalazine daily as my planned maintenance med once pred is fully tapered. My main concern is the pain i been feeling not necessarily abdominal pain as it has been only mild-moderate its more the constant headaches and joint pain and just some annoying and frustrating general feelinf of malaise. I haven't taken any pain killers for about the last week as i ran out and don't see my doctor for a couple of days. My main question is does anyone a good medicine to help with the pain. Panadol (Tylenol to those in US) doesn't seem to do much and I now know not to take advil. I was thinking of somekind of Slow release pain killer like Tramadol or Oxycontin for the days were i'm just sore all over with bad headaches and tummy pains and that way i can take it in the morning all with my sulfasalazine and prednisone (whilst on it) and the just go about my day with no need to worry about any major symptoms upsetting my day. Has anyone else had a similiar experience with setting up a SAFE medication plan that is effective and has given back that quality of life we all seem to be chasing after. I'm just sick of having the pains (tummy and head, etc) and being tired and not being able to think straight because of it and just want sort a nice contingency plan for my life and dealing with the crohns, that way i can go back to University and work and achieve all my goals without being bogged down all the time. Any tips would be so appreciated. Thanks guys - Tim

 

[ekay03]

My opinion is your taper is going to fast. It took me like 6 months to taper off of pred. Every time I went down on the pred the pain came back. What worked for me was going down 5 mg at a time. When I finally got down to 10 mg I started to taper even slower. 1mg less ever 3 days. Pred can be very hard to get of. good luck!!

 

[Tim]

Interesting ekay03, If that's the case i might have to definetly reverse taper the pred and go back up to 20-25mg i don't want things to backfire if my GI is tapering me too fast. I think it's because in the colonoscopy he did a couple of weeks ago my condition had gone from moderate to mild so i think he is thinking the pred has done its job and that i was in remission and is just trying to get me off them as quick as possible (which might not be the best idea). Did you ever get really weird joint pains and headaches. I'm not really too sure if it's from crohns or the meds or what. It's so frustrating. Thanks for the tip though

 

[ekay03]

I agree, pred has done its job but really getting off of it is the hard part. Symptoms I had were joint pain weight gain and mania. And now I have low bone mass, most likely caused by the pred I took. Now, on the upside, pred works really fast and really well. If you feeling bad on your taper please call the doctor and explain the problem and ask to try tapering slower. Pred does come in 1 mg tabs. I hope you feel better soon,

 

[Tim]

Thanks mate. Looks like i'm gonna have to taper way slower then. I didnt know how hard it was to get off and hope to god it doesnt affect my bones. I'm going to see my physician in a few days, hopefully he can sort out a safe 'crohns friendly' pain med to ease the upsets and stuff. I can't wait to get off the pred. That'll be one less drug i have to take which will be great. Thanks for your opinion/advice. I appreciate it. Seeya - Tim

 

[allieinwonder]

I don't have any advice on the crohn's meds, but I have been on tramadol since September of 2010 since my pain is so high and they don't know what is exactly wrong. It works, for 8 hours, and it not as mind altering as other narcotic pain medications (but it does alter it somewhat). It does have the side effect of constipation, which I have not have found a good remedy for except for not taking more than one a day and using tricks to help flush me out (like hot coffee in the morning after I take one to get my bowels moving). My GI is now trying to get me off of the med, even though I am not diagnosed and usually in severe pain. They don't like you on narcotics for long periods of time, but I don't take it that often, and tramadol is used more often for chronic pain.

Sorry if that was so long, just wanted to be as detailed as I can. I really recommend talking to your GI about the pain and seeing what he recommends!

 

[Tim]

No that really helps, I just want to know what meds people are on and how they deal with their pain symptoms. I was recently given some strong pain meds on discharge from hospital but don't like the way it made me feel (very drowsy and a little dopey). I'll be back at university and work soon and just want to make sure i have something on hand if needed that will help me get through the day without any side effects. It is hard to accept that this is a new situation i'm going to need to get used to. My GI did the same with the pain meds because of the dependence issues and he thinks it can cause an erratic bowel when you constantly take them. but to be honest im more worried about the side effects the steriods cause. Thanks - Tim

 

[farm]

25mg of Pred to me, is very low; but I agree you seemed to have tapered too fast. Normally I taper by dropping only 5mg a week until completely weened off. The highest dose I ever had was 120mg a day for 7 days, then dropped 10mg a week until I was down to 90mg; then dropped 5mg a week until I was off the stuff. (I almost went insane that go round.)

As far as pain killers, most GI's don't like to give them out because narcotics slow or disrupt the gasto-system. (Like slowing it down is a problem for us lol ) Anyway, once I finally got across to my GI that I was in intense pain, he gave me 30mg Morphine extended release and I could take 1 every 8 hours. (Of course he started at Tramadol and Vicodin, then moved to Percocet and Opana first).
It helps the pain, but I have very odd bowel movements now and still have extreme pain with a few of them.

 

[Zootini]

Hey I had the same probs & am still on 10mg daily (I started them november 2010) & I am also on Sulfasalazine, I find that the best thing for the headaches (although doesnt completely get rid of them) is co-codamol. The headaches can also be a side-effect of the sulfasalazine

good luck!

 

[Tim]

Thanks guys I apprecitate your stories and advice it's reassuring to know that I'm not the only one who has had these symptoms before and its not just in my head. I visited my local ER this evening because I slept through and missed an appointment with my physician, but this wasn't entirely my fault as the power went out to my house and my alarm clock did not go off. which i wasn't too pleased about. Whilst is was at the ER this evening they ran some tests, checked my bloods for elevated white cell count and any other signs of inflammation or anemia etc,etc. And seem to think I'm fine and within normal range (even though i'm still real tired and aching all over). Mind you this was the hospital who sent me home during a flare up once before dismissing it as a gastro virus. Anyway today they sent me home with some meds to relieve any of the pain/discomfort and to take along with my pred and sulfasalizine and i just have to wait until i can get into my physician or GI to sort out a newer plan because this one obviously isn't working. Thanks for your support guys and gals as this is all new to me and sometimes i don't know whether i'm over-reacting or not or just being cautious - Tim