Prednisone? Should I refuse?

[Chrispm]

Hi, I'm new to the forum. Brief history:

Diagnosed in June 2005 (age 20). Pentasa was unsuccessful so I was put on 40 mg of prednisone (August) after dropping to 108 lbs. In December I was down to 5mg, legs and ankles swelled up, couldn't walk, ER, pred increased to 20 mg. 5 weeks later, couldn't eat ANYTHING, or even a sip of water without throwing up. After 4 days, spent a night in the hospital, increased pred to 30 mg. I spent 2 YEARS on pred instead of 6 months....

2008, had a fistula removed. It was outside, not a major surgery.

Flared in 2012, entocort, imuran....

Now to today... I've been off meds for about 1.5 years (I know, not good). Just heard today that iron level is 15. CRP is 51. Stomach cramps for past 2 weeks. Vomited Friday and today. Constant diarrhea. Had a random fever of 103.5 last week for just a day. So, what do you guys think? The cramps suck, but they are nothing compared to 2005. I don't understand why the want to try 40mg of prednisone as a first resort. I asked about the Entocort and the nurse said 'oh, we are way past that.' Why??? Just based on the CRP? I'm afraid of being on prednisone again. I didn't have any side affects that bothered my (other than weight gain, which I wasn't complaining about at 108), it's just the failure to successfully taper. Does this approach sound too aggressive? Or is it best that I listen to the dr?

 

[ryansbronco]

I sounds logical to me. My docs will start a higher level and taper slowly. If you have improvement then they can look at maintenance drugs. My BFF is on prednsione for other medical issues (IMOP more jacked up than Crohns) she have been on about 2mg of prednisone for over a year now. It seems to be working for her

 

[Chrispm]

Well, I understand it's logical. Prednisone works well... Too we'll, lol. I just thought pred was more of a last resort. I went in fully expecting Entocort. And my history of having problems tapering makes me nervous and reluctant to try it again. I mean, is the CRP really bad enough to justify pred over Entocort?

I have a CT scan on July 7, and colonoscopy on July 11. I figured they would at least want those results before putting me on anything like pred. In 2012 I felt worse than this and they made me wait a month to prescribe anything until I had my scope done. Why is it so different? I guess I just want to be sure before jumping into something that turned into a 2 year process the last time...

 

[Johnnysmom]

Maybe if you get on Prednisone now instead of waiting until you are as bad as you were last time you won't be on it for 2 years. The worse things are, the less likely Prednisone is to work. And until you get on regular medication, this is the cycle you can expect.

I hope your CT and colonoscopy go well and you get things cleared up quickly. (((Hugs)))

 

[Chrispm]

I did just move to the city where my GI is located, so I do plan to stick with things better now (I was 3 hrs away from the nearest GI before).

Is tapering off prednisone a common problem. Should I be this worried about it? Or was I just unlucky? Lol.

And thanks. I'm kinda concerned about the CT scan. They are doing that because of the fever I believe. To look for a possible abscess or fistula. I've never had a fistula inside on my intestines, so that has my mind racing too... Lol.

 

[Magnolia24]

I don't think prednisone is considered a last resort, but a way to quickly get a flare under control, so you can make decisions about what you want to do for maintenance.

I was on Prednisone for 3 months after Entocort stopped working and tapered successfully. I did have some withdrawal - I had an awful headache and some stomach upset when I went from 10 mg to 5. But was fine from there. I also started Imuran while on pred, and made some pretty severe dietary changes (SCD).

I have really mixed feelings about prednisone. It made me feel emotionally wonky, and just felt gross to me...But it did the trick, and got me to a point where I could introduce some other changes to help me maintain remission.

Maybe a milder flare would mean an easier taper?

I understand your hesitation, though. Your experience sounds awful, and I would worry about just not being able to tolerate this particular drug well (or rather becoming too physically dependent on it). Did you ask if there are other options they would consider?

 

[Clash]

Prednisone is a rescue med so it is generally given to dampen inflammation in the immediacy while also starting a maintenance med that can have time to build up and take over as the pred is weaned/tapered. Since you have already had a fistula your disease is probably deemed fistulizing and is a more severe form.

Also pred tends to work very quickly whereas entocort can take some time and that may be time your GI is unwilling to bargain with since you have fistulizing CD.

I would write down all of your questions and concerns regarding his instructions and go over them with the GI nurse or even better the GI. Even though it is important to get the flare under control it is equally important that you understand and feel comfortable with the treatment process. If you understand the reasons behind the GIs choices it will possibly ease your mind and relieve some stress which can adversely affect your health.

Hope your CT and colonoscopy goes well.

 

[Johnnysmom]

My son's Sed and CRP were normal 6 days after starting Prednisone. He was on the full dose for 4 weeks and then tapered. I think his was about as quick as things go, he started 10/12 and was done 12/31, so 2 1/2 months. He just responded very well to the drug.

If you aren't seeing results this time you can ask about IV Prednisone. Some people can't absorb well and so the oral Prednisone goes right thru them. IV is much more effective.

It was not a last resort, he was put on it 2 days after he was diagnosed. The idea is to hit the disease hard and quick. If things continue to worsen they are just harder to get under control. GI's found they would start out with lesser drugs that for most people just wasted time, and they ended up doing Prednisone anyways but later down the road and then it didn't end up working as well.

I hope your taper goes better this time. You could ask about a biologic like remicade or Humira at the same time. My son was put on a "maintenance med" at the same time as Prednisone so that when he tapered off there was another med working to keep things under control. If you don't have a maintenance med I would think it would be harder to wean off the Prednisone.

 

[Roy1989]

I'm always hesitant to start a course of Prednisone and I hate it. It really throws me around in every way, mood disturbances, extreme hunger, slight moon face. However, I certainly haven't experienced the symptoms that you've noted.

The Pred is great for reigning in the inflammation quickly and kicking it in the arse before it gets any worse. An even quicker way is IV hydrocortisone.

You have every right to be concerned about starting the pred, and discuss this with your doctor's if you can. But stress to them your previous problems with the drug and they'll put you on a very slow weaning dosage.

As I said, I hate the Prednisone. However, It truly is the only thing that actually brings my Crohn's under control. It's just a shame that steroids are not a long term solution.

 

[Chrispm]

So, I decided to bite the bullet, started taking the Prednisone on Monday, and just hope this time works better than last. Don't get me wrong, it worked wonders last time! Within a week of starting it in 2005 I felt amazing. I still remember the first meal that I realized I was really better (about a week in), I was at Perkins and had a 3 egg omelette, 3 pancakes, and breakfast potatoes.... I was in heaven! haha.

It's just the taper that scares me. Well, the taper and the possibility of spending another 2 years on it (if that happens, that would be 4 years total out of 13). The long term side effects worry me. And hopefully my hopes of it turning me around quickly aren't overblown.

Thanks for all the advice. Now to wait for Monday to see what the CT scan shows and next Friday for the colonoscopy. The C diff came back negative, so I don't know if that means it's even more likely that the fever was caused by another fistula.

 

[Patricia56]

You could ask for an endocrinology consult when it comes time to wean off the prednisone. They are really the experts in the use of steroids and might be able to supervise your wean as safely and rapidly as possible.

However, there may be no endocrinologist near you so that might take some travel on your part. You could ask your GI to consult directly with an endo when it's time for you to wean and they could do it by phone or skype, etc. I imagine the docs in your part of the country are doing that a lot these days.

 

[Chrispm]

Thanks for the tip, I will remember to check into it in a few months! I think they have started the skype type things now, but I'm assuming there's one here. I was just moved to the city where my GI is located, so I do have better access now. It's the biggest city in South Dakota, roughly 170,000 people (225,000 counting the surrounding towns), so I should be able to find somebody locally.

Thanks again, I definitely will be more proactive about this taper. I looked at the prescription and they actually had a more aggressive taper then last time! 40,35....20,15,10,5, done (2 weeks each). 4 months start to finish. Last time once I hit 20mg, they slowed it down to 17.5, 15, 12.5, 10, 7.5, then alternate 7.5 and 5 every other day (one week into that is where I first had issues). This time they didn't even have the 2.5 drops.

Since I didn't have problems until 5 mg before, I may stick with their taper down to 10 or 15 (at least skip the 2 weeks at 17.5), but I definitely think I want to slow it down around 10. From what I've read, 10mg seems to be where most people start running into problems? Obviously 2 weeks at 10 and 7.5 weren't enough to prepare me for alternating days between 7.5 and 5.

 

[Patricia56]

That definitely sounds like too fast a taper.

Your body makes about 20 mg/day and once you've been on pred for a while there's a chance your body will stop making it's own. So once you get down to 20 and below if your own body doesn't kick in at the normal level you have problems with weaning symptoms. The best way to avoid this (it can be life threatening sometimes) is to do a gradual wean once you reach 20 mg.

Having a renewal of CD symptoms while weaning is separate from this issue.