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Advice on Prednisone Tapering

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Posted 6/11/2011 4:56 PM (GMT 0)
Hey all,

I was wondering if anyone had any issues tapering off of pred? More specifically I went down from 50 mgs to 25 mgs this week and within a day I've had 7 bright red and watery bm's. My diets been very clean. And very bland. I was on 50 mgs for a week and it seemed to "sort of" work. But as I said, as soon as I tapered down to 25 mgs it was like clockwork. Smaller bm, then even smaller, then loose with some blood, then bright red. As it seems that the brighter the blood the closer to the exit, I'm going to try for the third time to convince my doc to give me rectal meds and hope to stop this in a hurry.

I was in a pretty bad flare 3 weeks ago and ended up in the hospital (lost 17 lbs in 3 days and was told I was anemic).

Thank god this happened this week as my wedding was last weekend. Any suggestions or solutions? Thanks

*Changed the subject so you get more responses*

Post Edited By Moderator (notsosicklygirl) : 6/11/2011 2:02:13 PM (GMT-6)

Posted 6/11/2011 5:41 PM (GMT 0)
Hi zoolander,

I've only once seen a taper like yours, and that was overseas years back, and that was the whole taper in 1 (one) week.

My "usual" tapering off goes more or less: (100) 60, 50, 40, 35, 30, 25, 20, 15, (12,5) 10, 7.5, 5, 2,5 ...

Jumping from 50 to 25 sounds like a huge drop, in my humble opinion. Maybe things have changed and fast tapers are the new thing.

Congratulations, btw.

Hopefully you and your GI doc find a solution fast for you that works.

All the best.
Posted 6/11/2011 6:02 PM (GMT 0)
thanks for the reply.

The thing is I have had this for 4 months and still have yet to get in to see a gi. My appt is for June 28th. So right now I'm dealing with walk-in docs who seem to be opinionated but unfortunately lacking knowledge, I said the taper was too sudden and they reassured me everything would go fine......turns out it didn't.
Anyways. What I'm thinking of doing is asking for a course (like the one you usually do -100-60-50 etc) and also the enemas so that I can beat it from both sides. In the four months since I've been dx'd I haven't felt "normal" or in remission so, I don't know. As frustrating as it is with sides and so on, pred does work in a higher dose for me (50 or more).

Its official. I hate UC. The most annoying thing I've ever dealt with for sure.
Posted 6/11/2011 6:22 PM (GMT 0)
Zoolander,

It's tough, I know.

Why you are not able to see a I GI doc faster is beyond me.

If I got it right, you're hospitalized and the docs there decided for the tapering? Where was the GI doc then?

My individual experience is that only the prednisone in high initial doses works for me. In hospital it's always 100 IV and at home 60 mg. We are all different and require individual care, but your taper sounds 'ridiculous.'

But, hang in there.. Once you find a good GI doc life gets better. UC is not the greatest invention since the wheel, but one can live a comfortable life with the right doc, meds and diet - not to mention attitude. The less you worry the better.

I wish you all the best. June 28th is not so far away.
Posted 6/11/2011 7:01 PM (GMT 0)
I'm not sure why the wait is so long, when I was in the hospital I asked to see a specialist and they told me that he wasn't answering his phone.....sounded like a bs excuse to me but that's how it goes I guess. Hopefully I will get this under control with the help of a good gi as regular physicians have been, well, not so helpful.

Looking forward to that normal life :). The one where its fine to not want to use public washrooms again.
Posted 6/11/2011 8:07 PM (GMT 0)
zoolander, I agree with Kiwi 100%, that is way too big of a jump from 50mg to 25mg. I would try tapering much slower. It is a shame that you're having so much trouble getting in to see a specialist. You should really start looking for a reliable GI who is available to see you when you need an appointment, you can't wait months when you're in a severe flare up. You also can't depend on the advice provided by clinic doctors, they are not as informed about your history or UC.

My last taper, which was successful for me (after a failed taper), was 40mg until symptoms were gone, tapered 5mg every 10 days or until I felt stable enough to taper. At 15mg, I was very unstable and unable to taper for a couple weeks, I waited until I was stable and went down 2.5mg a week. After 10mg, I went a 1mg a week! I know it sounds ridiculously slow but it worked!
Posted 6/11/2011 8:30 PM (GMT 0)
I just got out of the clinic now, and saw a new doctor. He was a general physician but although he admitted he didn't know a whole bunch about UC, sat down and pulled out his books and actually researched the stuff I was showing interest in he said my taper was also ridiculous and gave me 100 mgs for 3 days to stop flare quickly and then gave me the taper I suggested.

Also he was very willing to supply me with rectal meds, the first doctor there that would. Although no enema (small town pharmacy didn't have) I got pentasa supps.

I think its crazy that I'm this excited to have a doctor who listens and understands what your trying to say and replies accordingly.

Oh, and he told me upon reading the scope findings that it was pancolitis I had, not proctitis, which is what I was originally told.....oy. Lol

Thanks kiwi and notsosickly I will definetly be tapering smarter due to your input
Posted 6/11/2011 8:41 PM (GMT 0)
zoolander, I am so happy that you found a doctor who is willing to do some research and listen. I think the pentasa supps will be helpful, they don't treat as much of the rectum as enemas but it's much better than nothing! I hope you can taper successfully. Keep me updated. If you have any questions, I am here.
Posted 6/12/2011 3:15 AM (GMT 0)
After reading this thread...I'm curious myself about my own taper plan. My doc started me off on 40mg (Apr. 20) and had me tapering down 5mg every 2 wks. Well, the pred has not positively affected my bleeding, but it has given me stomach and throat ulcers (diagnosed by my family doctor). Of course, she prescribed a higher dose of prednisone for the ulcers! So, back up to 60mg I went today, and she has me tapering down 10mg every week. I know most of us on here are not pharmacists, but I'm wondering why there is a such a difference in prescriptions for tapering. I guess the higher dose can be a blessing in disguise, because I just made some dietary and supplement changes that are helping, so now maybe the pred can actually do its job!
Posted 6/13/2011 4:06 AM (GMT 0)

zoolander said...
I just got out of the clinic now, and saw a new doctor. He was a general physician but although he admitted he didn't know a whole bunch about UC, sat down and pulled out his books and actually researched the stuff I was showing interest in he said my taper was also ridiculous and gave me 100 mgs for 3 days to stop flare quickly and then gave me the taper I suggested.

Also he was very willing to supply me with rectal meds, the first doctor there that would. Although no enema (small town pharmacy didn't have) I got pentasa supps.

I think its crazy that I'm this excited to have a doctor who listens and understands what your trying to say and replies accordingly.

Oh, and he told me upon reading the scope findings that it was pancolitis I had, not proctitis, which is what I was originally told.....oy. Lol

Thanks kiwi and notsosickly I will definetly be tapering smarter due to your input

Great news, zoolander. tongue

I'm so happy for you.

All the best.

(keep us posted, please)
Posted 6/13/2011 6:24 PM (GMT 0)
I'm sorry to hear about your troubles rinnie but glad that you seem to be on the upswing.

I'm on my second day of three at 100 mgs and so far so good. The salofalk supps and pred are doing there job pretty good, down to 2 washroom breaks a day with no urgency. Had my first salad in 2 months today (....hopefully I didn't get too greedy lol) and it tasted like heaven.

Looks like everything is getting better and the countdown to seeing the specialist has started, just over two weeks now.
I don't like being on the pred but for now I think its necessary to get this annoyance under control.

A question though, what does everyone consider a flare? Blood? Diarrhea? Cramping/bloating? Cause it seems some people never get rid of the blood. My symptoms are usually gradual over 2 days then on the third if I haven't stopped it, I end up 20 times to the restroom all blood. Sorry for being graphic, still new to the scene I guess lol.
Posted 6/13/2011 6:30 PM (GMT 0)
I think it's a flare if any symptoms persist for more than a few days and cause discomfort or activity out of the "norm".
Posted 6/13/2011 6:49 PM (GMT 0)
Zoolander,

Great news!!!

Interesting question about defining a flare. I pretty much know the sequence that leads to an appointment with my GI doc and medication, and eventually to a remission.

The first indication for me is always excessive gas, followed by abnormal BMs and blood, mucus, etc. I hardly ever have diarrhea while flaring. My problem is constipation.

http://es.wikipedia.org/wiki/Archivo:Bristol_Stool_Chart.png

So, to answer your question, I'd say that in my individual case a flareup starts with excessive gas. In reality I'd say that it's a combination of your individual symptoms. For example, diarrhea, blood, gas, cramping, etc. - the opposite of remission, where you don't experience any of the symptoms.

We're all different with diverse symptoms and flare ups.

I'm happy you're doing so much better.
Posted 6/16/2011 4:15 PM (GMT 0)
Haha the bristol chart! I started using that a few weeks ago after one of my coworkers accidentally read my "porcelain throne journal". Suffice to say the descriptions weren't the most pleasant.

Yah I started these pentasa enemas at night, and although they definitely aren't the easiest or most convenient medication to take......err administer I guess? They seem to work pretty good. I know there supposed to be for distal colitis but I guess why not attack the issue from as many angles as possible. They make the morning trips murky but I'm down to only 2 a day. A far and happy cry from 20 something. Starting to gain the weight back and incorporating spaghetti and salads into my diet.....which seem to do nothing but help, even with delicious fat free italian dressing! Although I'm still tapering pred from 100 to 75 to 50 as of today things are looking good. The most normal and pain free since diagnosis.

Anybody try vitamin E enemas? I keep finding documentation of this fellow who cured himself by using 20 capsules a day. Just wondering if there was any legitimacy to that?

Oh and Kiwi and notsosickly, do you find that the earlier you catch a flare up the faster you can stop it or do they pretty much run a set course regardless?

Thanks
Posted 6/16/2011 7:21 PM (GMT 0)
Hi Zoolander,

I'm so happy you're doing better every day.

Yes, it's good to use both oral and rectal meds.

My experience is that the earlier you catch the flare up coming, the easier it's to treat it.

At the present, I caught the most early individual indication that remission is going to end: excessive gas, and I responded like the professional UCer I'm. In addition to seeing my GI doc and making an appointment for colonoscopy, I made the changes to my diet, life and supplements the situation required.

The gas has decreased, as has the blood. I've had only one BM a day (3/4 in the Bristol scale). I most probably will not need prednisone to get back to remission this time.

It is a very good idea to keep a UC diary. The faster you get to know yourself UC wise the better.

I'm certain that every veteran knows a mile ahead when the S will hit the fan.

Keep up the good work and keep us posted.
Posted 6/16/2011 8:57 PM (GMT 0)
Kiwi, so glad to hear your skill fullness in detecting, and meeting your oncoming flare head on! That's awesome and gives me hope!

Its also good that you didn't need the dreaded pred to help you!
If I can ask, what type of lifestyle/diet/supplement changes work for you? Do you go low res or?

I'm still a newbie when it comes to this but I like to think of myself as a sort of sponge, just soaking up everything I can lol
Posted 6/16/2011 9:58 PM (GMT 0)
Zoolander,

Stress is the number one trigger of my UC, followed by food.

When I detect any indications that life may change dramatically, I must take care of any additional stress in my life and do exercises that decrease it.

I doubled my VSL#3DS probiotics in addition to Chia seeds and Quinoa, etc.

I quit eating certain vegetarian foods that may add pressure to the GI system, which contain beans or lentils or certain spices.

I've made no changes to my meds (for some odd reason I don't see my sig line listing my meds anymore?).

Why this works, I don't know - thank God it works.

Keep on perusing this site, read the old posts, search whatever interests you.

Take care of yourself.
Posted 6/16/2011 10:16 PM (GMT 0)
Awesome. Will do. Thanks for the tips!
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