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Prednisone questions

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Posted 1/29/2012 4:52 AM (GMT 0)
I have been put on prednisone for my newly diagnosed CD that my GI described as mild and limited...Is it strange to be put on Pred? And I am on a tapering schedule for the next few months and was wondering if anyone has any experience with tapering and if it is a terrible feeling along the way.

Thank you

Posted 1/29/2012 5:16 AM (GMT 0)
I'm sure almost everyone on this forum has been put on Prednisone. Most people have a love hate relationship with it. It can make you feel like your old self, gives you a lot of hunger(a lot of people gain a load of weight on it), and ultimately can bring inflammation down. It also has bad side effects long term and just annoying ones short term. I'm not going to scare you so you can google them. A lot of the serious side effects are rare.

I was put on 40 mg of Prednisone in October then in November I got worse and was put on 60 mg IV Prednisone. I'll be down to 10 mg in a few days and should be completely off it by Valentine's day! When tapering I get weak muscles, euphoric, jittery, head aches, mood swings and some abdominal pain but that's normal. Be aware that the steroids may not work for you. I have malabsorption issues and steroids don't have much of a affect on me so I haven't gained any weight but I have had eye issues, muscle problems, moon face, and bad acne on my face and back. That didn't happen until about 2 months of being on Prednisone. If you are steroid refractory like myself, don't worry! Many other medications are out there.

Welcome to the forum & get well soon! Members here are great!
Posted 1/29/2012 4:26 PM (GMT 0)
Yes, it is typical to start treating Crohn's with steroids, but if your disease is really mild and limited you might be able to taper quickly and get yourself on a more reasonable medication. What dose did you start on and where are you now in your tapering? How are your symptoms?

My first GI started me on 5-ASA meds, not steroids. I eventually had to use prednisone about 4 years after my initial diagnosis because my illness started to cause terrible joint pain. Since that one time on steroids (started at 60 mg and tapered to zero in 3 months) I have not had to go back. I have stayed with 5-ASA meds the whole time of my illness.

Your DR should have you on a 5-ASA right now so that you can taper the prednisone. Depending on where your inflammation is, you can choose among many different 5-ASA meds, some more expensive than others.
Posted 1/29/2012 4:36 PM (GMT 0)
I second Kazbern and think that you have to be on 5-ASAs while tapering pred. Try to make the tapering quick. The side effects of pred surface after long use. Avoid a lot of salt in your food in order to avoid water retention and eventually weight gain.
Take care!
Posted 1/30/2012 2:33 AM (GMT 0)
The thing is I had started on 40 mg of pred and am now doing 30mg for two weeks then I will decrease by 5 mg every two weeks till I am off. The  GI ..who has been in practice for 38 years..tried to say that when I go back in April...when my Pred will be done then he will go off of my symptoms and may not need to do anything or see me again for a year. Does this sound right? He said in 80% of young healthy females the pred could help and i may not have anymore problems. I guess reading all the posts I have never heard that happening at all. So I am very curious as to if he knows what he is talking about...He is highly talked about as far as being a very good doc.

Thanks

Posted 1/30/2012 3:30 AM (GMT 0)
No that does not sound right. find yourself another DR. A lot of GIs do really well at other things and don't know squat about IBD.
Posted 1/30/2012 3:54 AM (GMT 0)
I took pred when I was first diagnosed with Crohn's in 2006. We weren't sure of the severity of my Crohn's at that point and I was also put on a similar taper plan. Prednisone is great for getting you back to your 'old self' quickly and supressing symptoms, definitely the best quick fix out there but the side effects do kind of suck. The puffy-ness is a little irritating but a fair trade off for not feeling sick every day. If you taper correctly the exact way your doctor says to your side effects should be very minimal. As soon as you're off try and get on a good "entry" level maintainer like Cipro or 6MP, maybe even a diet. Good luck with every thing!
Posted 1/30/2012 6:04 AM (GMT 0)
Thanks for the replies.:).. Blue are you on a maintinance med now? I just found it odd that he would sya that when I go back in April that I will may just go off of my symptoms and see what it brings. The thing for me is that I nvere really have been sick...I had a pain in my left side for months that led to a small bowel barium test and boom it shows CD...never have had more than one bm a day..ya its usually alway loose but no blood or anything. I guess I am just confused I have not read anyones.."MILD: stories and makes me feel bad for being here.
Posted 1/30/2012 6:17 AM (GMT 0)
I'm on a 6 week Remicade infusion now after going through Cipro, 6mp and methotrexate (oral and injection) treatments. The Remicade works very well for me and affords me the most 'normal' lifestyle but as I understand it Remicade is for the more severe cases. I mean I'll level with ya; I doubt I'm the most severe case on this website but I am worse off than some of the other people I know. The ultimate plan for me I think is to get to a place where I can get off a maintainer and onto a diet and it appears as though your doctor feels comfortable doing that as soon as you taper off. If you can manage to get it under control with Prednisone and then monitor your diet closely and stay away from 'trigger' foods you should be all good. Your next best bet is probably and entry level maintainer like 6mp or Cipro. My experience is that you try the mildest maintainer treatment and stay on it until it fails you or doesn't help you at all. I also don't know your age or lifestyle but I'm only 18 and am a very active college student so I may not have even hit the worst of it yet and my lifestyle may help regulate differently than say a business man or woman who has all day sitting at a desk to feel their stomach hurt. I generally tend to play through any type of pain unless it's actually debilitating. Hope this rant helped.
Posted 1/30/2012 4:31 PM (GMT 0)
Blue and Malshay, most of us here will tell you that getting off maintenance meds is an invitation to disaster with Crohn's. As you've seen, Malshay, you can be "not very sick" and still have inflammation in your bowel. The pain you felt that brought you to the DR could have become an obstruction or even a bowel perforation - you definitely don't want that, I am sure. If you go without meds the likelihood is that you will continue to have inflammation and your condition will require even stronger meds or higher steroid doses later on to reduce that and get you healthy again.

Also, Crohn's can be mild but still leave you with poor nutritional absorption. Low vitamin D, low iron... both of these are pretty common in Crohn's patients. Taking maintenance meds is how you can keep your bowel healthy and the rest of your body working well.

There are plenty of dietary choices you can make that will help you feel better (although if you're not feeling bad, Malshay, that may be hard to figure out). Some diets claim to induce remission - the science is weak on that. But to be honest, the science on most of the meds we are on is not that great either. The biologic meds like Remicade and Humira have the best scientific evidence behind them for inducing remission and maintaining remission, but as Blue said these meds are usually used in cases where there is fistulizing disease and other serious Crohn's inflammation.
Posted 1/30/2012 8:58 PM (GMT 0)
I was told that I had a "mild" case. I suppose compared to a lot here it is mild. But I was told it was mild right after almost bleeding to death from it (deep ulceration). I flare every few years it seems. I left the hospital when diagnosed with Asacol (a maintenance med). Since then every few years I have to go on Prednisone because of bad flares. Once I wean off the pred, I believe the Asacol is what keeps me in remission for those years in between.

The problem with Crohn's is that it can be silent, yet be doing lots of damage on the inside. I've heard many stories of people who said they feel fine, and go off all medications. Only to have a really bad flare with lots of damage already done in the inside. A lot of the time requiring surgery. So I'm a firm believer in maintenance medication.
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