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Posted 7/7/2008 3:10 AM (GMT 0)
Hi everyone, I hope all of you had a great 4th of July weekend! :)

I'm just curious, what is the highest dose of Prednisone you have all taken?  Over the long weekend I was not getting much better (still!) and went up to 60mg for 3 days. I was having some horrible side effects - felt SO nauseas in the middle of the night last night and just felt dizzy.  Went back down to 40mg today and started taking the Mesalamine enemas twice instead of once a day. Well guess what? As soon as I get home tonight I have a BM with quite a bit of blood (I knew I 'felt' it bleeding in there, I guess I was right!).  So now I"m wondering if I go back up on the Pred or just stick with 40mg and see what happens, or what.

I'm having quite a time getting any help from my doctor.  I never even get to talk to him - they always push me off on the nurse practioner or his assistant who are of no help at all.  I'm really feeling like I might need to find a new doctor or practice all together at this point.  The last advice I got from the nurse practioner was 'there is nothing else we can do'....this is with them just having me at 40mg Prednisone and one enema a night. Seems to me like they aren't trying to hard!

Nikki

Posted 7/7/2008 3:26 AM (GMT 0)
Find a new doc, and quickly. Get to a center of excellence if you are in a city.
The pred is only step one, and there are miles to go before you "sleep'. A pro-active doc would try a few other meds. Lialda, Asacol and the 6mp have worked wonders for my daughter. She was on 60 mg of the pred and has been tapering off since March. Alll thru the taper, she has been building up her levels of the 6mp, and that takes time. Even the blood tests to determine it's viability take 2 weeks---a long darn time if you are in a flare. You need to get on this right away.
Best of luck
K
Posted 7/7/2008 3:34 AM (GMT 0)
I agree. If there's nothing else your current GI can do, he's incompetent and not up to the last decade in IBD treatment. There is a whole lot more that can be done. Prednisone is okay in short bursts to bring a flare under control, but is absolutely not an appropriate maintenance drug. In the long run, it will hurt you far more than it helps.

There are oral 5-ASA's (Asacol, Colazal, Lialda, Pentasa), immunosupressants (Azathioprine, 6-MP), and other medications beyond those.

Oh, and you'll rarely see me calling a healthcare provider incompetent, but in this case I think it's the only appropriate term. Find a new GI doctor ASAP.
Posted 7/7/2008 6:39 AM (GMT 0)
Pred is basically a "bandaid" treatment, commonly (or wisely) used to help with maintenance drugs to kick in since pred works almost instantly for most of us and maintenance drugs take a while (months at best) to kick in...some docs will consider using pred as a maintenance drug for patients that cannot tolerate or respond to maintenance drugs (I'm one of them) but a good doc will thoroughly discuss this with their patients first...and you really have to weigh the risk to the benefit of going this route, my personal opinion is it would make more sence to get your colon out if it's that bad that pred would be considered by your doc as a maintenance drug then live with the terrible long term side effects pred will more than likely have on the rest of your health...besides which, pred is not always a guarantee either when it comes to continuously working for IBD symptoms, long or short term...it's affectiveness can wear off then where would you be, losing your colon anyway AND living the rest of your life with the long term affects of pred.

:)
Posted 7/7/2008 8:30 AM (GMT 0)
I was on 40mg for about 3 weeks (I've been on pred over a year ranging from 5mg-60mg) I saw improvement, and then It stopped working like I was on nothing at all. I had my dosage upped to 60mg (which is the most Ive ever taken) after a colonoscopy still showed severe pancolitis while on 40mg. I recently switched doctors because my previous GI sounds like yours. I just talked to the nurse mostly and all they could offer me was prednisone. I start Remicade this week, which if it works, the tapering will start. My new GI was suprised I was on pred for so long. My body is going crazy on this drug and I desperately need off it. The prednisone has given me gastritis so I get terrible upper stomach aches and I get very nauseas as well (more so at night). The blood is getting less on 60mg, but I could eat 24 hours a day, have a puffy face, super-cute acne and hip pain. Love this stuff!

I could tell a significant difference in bleeding after going up to 60. The 40mg just prolonged the time I got to enjoy the side effects and the bleeding continued. If i were you I would stick with the 60 to stop the bleeding then get a new GI to explore other options. I feel much more confident after switching doctors.
Posted 7/7/2008 1:14 PM (GMT 0)
Neondream, that's interesting that you say the Pred is giving you horrible upper GI cramps. I am really wondering if it is contributing to mine too. Do you take your Pred dose in the morning? I feel like by the time evening falls, the dose starts to wear off and the pain and nausea begin.  The nausea was almost unbearable at 60mg - it woke me up in the middle of the night. 

Normally 2 mesalamine enemas a day would take my bleeding away within a week (luckily).  But with these upper GI pains, I feel like the enema in the morning is almost worthless. I take one at night, which I feel helps. Get up very early, eat, have a BM and then take the other one and lie down for another hour. But when I get up I have to go to the bathroom right away. I suppose having the morning enema in for an hour is better than nothing, but I doubt its doing too much that way. I used to be able to use this flare-up regimen and keep the morning enema in most of the day.

I'm going to try to call my doc office this morning and insist that I see my GI doctor and not his 'assistants'.  If they won't help me, then I'm going to tell them I want an appt with another doc. I'm about ready to drive down to Mayo and start going there like I did 12 years ago. That is one place that will not ignore you when you are having a flare.

Nikki

---------------------

Maintenance meds:  3 Colazal, 3 x day,  1 mesalamine enema/night

Posted 7/7/2008 8:25 PM (GMT 0)
I take my dose in the morning always before 11 and I always have a full breakfast. I also take prevacid and tums before I eat then the prednisone after the meal. The stomach aches and nausea start later at night, wake me up in the middle of the night, and last until about 1pm the next day then they kind of calm down. I only woke up once last night which was amazing, I finally got some sleep. I have to sleep on my back because if i roll around too much it can trigger a stomach ache again. Its so strange. Sounds like with your doc you have to be bossy and demand treatment, it's sad that it has to be that way. I hope it works out for you :)
Posted 7/7/2008 10:52 PM (GMT 0)
Yes, if your docs aren't helping you - go to a new one. If you've been to Mayo previously, they may be able to get you in quickly.

40mg of pred is the highest oral dose I've been on. I was also on solumedral - IV pred - in the hospital. Not sure what my dose was (I know - bad me) but I was not feeling well enough to really care...

If you're still bleeding on 40mg, that's not a good sign. At that dose, I usually split it into two doses - not sure if it helped or hindered - but that much at one time made me feel pretty crazy.

Good luck!
Posted 7/8/2008 3:26 PM (GMT 0)
The highest dose of Pred I have ever taken is 60 mg, and whatever level of Pred I might currently be on, I divide it up into three times daily to balance out the "coverage".  However, this does make it very hard to sleep at night.  I don't think upping the Pred for just three days would probably have helped much; seven days might have worked better, then taper off 10 mg instead of 20 mg.  Hope you feel better!

Posted 7/8/2008 4:19 PM (GMT 0)

The bleeding is still continuing, but the stomach pains have subsided a bit (with exception of this morning after I took the Pred).  I think with the higher dose the stomach pains were just being magnified. Everyday seems to be a little different - last night I felt great and could eat whatever I wanted with no problems. Last night had bleeding again, took the enema before bed and this morning and bleeding stopped.  This morning I feel worn down and am having cramping. I'll have to see if the enemas twice a day help take away the bleeding. If they don't by the end of the week, then I might need to go up on the Pred again.

But for now I'm sticking with 40mg since the side effects really seem to be bothering me. I have to take the whole dose in the morning since I have trouble sleeping at night if I take it later (which makes work even harder in the morning).  Hopefully things will improve,  I guess everyday is a new day with its own ups and downs!

Posted 7/8/2008 5:43 PM (GMT 0)

for me w/pred it is two steps forward, one step back.  So I will get better, then I will have some blood, but it is less and less and over the course of a week or two I really notice the difference, looking back.

HTH!

Posted 7/8/2008 9:18 PM (GMT 0)
How do you normally split the Pred dose?  20 in the morning and 20 in the early evening?  I'm wondering if I should try this, but a little worried I'll feel crappy the first day I do it (since my normal 10am dose would now have dropped by 20mg all of a sudden).  Since the bleeding seems to have calmed a bit (be-hind doesn't hurt quite so much) and the pain in my gut isn't so bad, I'm wondering if I should try the split dose. Sure wish I could remember what I did 12 years ago when I took Pred before. I think I split but I just can't remember!

Posted 7/8/2008 10:16 PM (GMT 0)
The highest I was on was 60mg for a very brief time but then on 45mg for 5 months straight without taper and at that point it stopped helping at all and just gave me nasty side effects. I tapered myself off, found a new doctor (he wouldn't let me taper even when I said it stopped working and told him of the side effects) and I've been refusing to take it ever since.
Posted 7/8/2008 11:29 PM (GMT 0)
Are you increasing the prednisone on your own or are you talking with the nurse practioner or assistant at the doctor's office first?  It seems a little risky to me to up a dose of prednisone from 40mg to 60 mg on your own, especially for only 3 days.  Did the doctor's office suggest it?  Then how did they tell you to taper?  When I was on it for a flare, my taper was very specific.  

I've noticed other posts about people increasing various meds (mostly enemas) but do some increase prednisone on your own, too?  Just wondering.    

Posted 7/8/2008 11:41 PM (GMT 0)

Nurse Pracitioner pretty much told me going up to 60mg wouldn't do anything, but I could try it for 3-5 days if I wanted to.  So that's why I upped it to 60mg, but with the side effects decided to go back down to 40mg.  I actually specifically asked her, that if I did go up to 60mg for a few days, would I taper down to 50mg and then to 40mg?  She said no, go right to 40mg.  But as I've said, she doesn't seem to be very helpful and I've let me doctor's office know that I do not want any appts or advice from her in the future. 

I upped the enema dose to twice a day on my own, but I've done this in the past and my (actual) GI doctor has told me I can do this whenever I feel I need to for a flare.

Posted 7/8/2008 11:46 PM (GMT 0)
To be honest I don't think splitting it will be of any benefit...always take them first thing in the am so you can sleep at night.

I do hope you feel better soon, I know it's frustrating.

:)
Posted 7/8/2008 11:58 PM (GMT 0)

I think I'd be real skeptical of that nurse practioner, too, MN.  Upping the pred dose like that with no taper just doesn't sound right.  Maybe the doctor doesn't know what his employees are saying?     

I split my pred dose - with breakfast and about 1:00 or 2:00.  I think it helped me sleep a little better.  I also took it with food.  I take almost all meds with food now and I have less indigestion. 

Good luck seeing your actual doctor!

Posted 7/9/2008 6:22 AM (GMT 0)
I had 100mg per day solumedrol (similar to prednisone) intravenously when I was in the hospital near the beginning of this flare, had extreme anxiety and tensions, maybe steroid psychosis. Then I took 80mg per day oral pills (split in 4 doses - couldn't sleep at all) for awhile. I think te 100mg solumedrol then the 80 mg prednisone were unusually high doses - I was bleeding quite a lot. Then I tapered down to 60mg. Then 40mg. Then 30. Then 25. Now I am at 20mg and supposed to stay at this level for a month til my next appt with my GI doctor. My doctor says at the really high doses it was ok to drop alot to next level (100 to 80 to 60 to 40) but then you start to make the increments smaller (40 to 30 to 25 to 20) and that later we will make the increments even smaller when we get to 10mg and less. I have plenty of unpleasant prednisone side effects, counting down to whenever I will be fully off of it...
Posted 7/10/2008 1:47 AM (GMT 0)

So apparently 3 tsp of Mylanta, 2 pieces of toast with peanut butter - then the 40mg pred - then a can of ensure and another tsp of Mylanta - means no stomach pains and cramping for me after taking the pred.  Whew!  Quite a 'routine' but if that's what it takes to not be doubled over in pain at my desk, then I'm all for it! :)

Besides some major bloating and gas (and quite a bit of gurgling!), and about 5 (and counting) BMs today that are not formed at all, I'm not seeing anymore blood (or pain when I go) and seem to be able to eat a much wider variety of food.  I hope that means I can reduce the Pred this weekend to 30mg!  I'm not sure what the reduction in symptoms is that constitutes a reduction in the Pred normally?  I'm going to call the doc on Friday and hopefully get some decent advice on the next steps. 

Nikki

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