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Questions about Prednisone

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Ulcerative Colitis
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Posted 9/19/2011 2:03 PM (GMT 0)
I have always been able to control my symptoms with Lialda and Rowasa, but I think it's time to step it up a notch because these are no longer working as well as they usually do. I have never been on Pred and am very nervous to start it after reading up on the side effects. I just have a few questions...

1.) I'm breastfeeding so obviously worried about it affecting my baby. Anyone breastfeed while on it?

2.) Are the weight gain/ facial hair/acne immediate side effects or do they develop over time? I'm hoping I won't need too much to pull me out of this mini flare.

3.) Once you start Pred, are you more likely to become dependent on it and need it in the future?

4.) I am open to trying homeopathic remedies as well. What has worked for you?

Thank you for your input. 

 

Posted 9/19/2011 5:09 PM (GMT 0)
i would not start prednisone. i'd skip to 6mp. the prednisone side effects TOTALLY outweigh the side effects of 6mp, which i haven't really had any side effects.

i gained 35 lbs in 2 days from the prednisone. it was so painful that i couldn't walk and someone had to lift me out of bed for every 20x i had to go to the bathroom. i couldn't bathe myself so i had to have my mom or dad give me baths- mainly because i couldn't lift my body parts because they retained so much water. the prednisone didn't really affect my symptoms either- i still had a lot of bleeding, urgency, and cramping.

granted, my experience with pred has been horrible but it might help some people. i'm still tapering on it now and i can't wait to be off of it for good. i am never starting it again.
Posted 9/19/2011 6:17 PM (GMT 0)
You sound like you've flared and then increased your meds and responded to that increase before.

Did you go without the enemas and Lialda between flares?

Can you add Canasa suppositories? You can use that twice a day. Can you switch to a steroid foam enema? Or try increasing the Rowasa enemas to twice a day.

Are you taking the maximum dose of Lialda?

Can you take psyllium husk caps or powder to bulk up any diarrhea. Commercial form is metamucil.

How long have you been on the nightly enemas?

I would try to avoid prednisone, and only use it to stop a severe flare. I think you have to be very bad off to start on prednisone. And I'm not sure you've exhausted all your less toxic options before going to 6mp.

Just suggestions...
Posted 9/19/2011 6:26 PM (GMT 0)
As far as pred side effects, they settle in down the road. However, I believe many people think they are on a short course of prednisone, but it ends up being a long time before they are finally off.

An immediate problem with pred is lots of energy and difficulty sleeping, so you need sleeping pills. I don't know how all this goes with breastfeeding. You'll be incredibly hungry and ultimately pack on pounds that don't necessarily come off when you get off the drug.

You won't necessarily become pred dependent.

I think 6mp is a major decision and I wouldn't jump to that.
Posted 9/19/2011 6:48 PM (GMT 0)
@journey2health...i agree with what you say about the 6mp being a major decision. I was on Imuran for about 3 months and it gave me pancreatitis so that didn't work. But, I have taken prednisone for many reasons throughout my life and especially since being diagnosed with UC last year, the only side effect I have had from it, after currently being on it for 3 months, is an occasional mood swing and maybe have gained 10 pounds so overall i am pretty lucky i guess. but you need to do what you think is best for you!!
Posted 9/19/2011 7:48 PM (GMT 0)
Personally I think prednisone is a great choice to get a flare under control quickly. And it is safe to take while breastfeeding. You and your DR should make a plan that includes the timing of your taper, and what the criteria should be for starting the taper and continuing it.

You might have a hard time sleeping at some point, but you have a newborn at home so - hey - having more energy than usual is going to be a blessing.

The one time I went on oral pred for an IBD flare I started at 60 mg, stayed there for 3 weeks and then tapered down. My total time on pred was about 3 months.

My rheumatologist was the one who prescribed this - my flare happened to be all in my joints and not so much in my gut. He did a bone density scan before I started the pred just to get a good data point. I was about 44 when this all happened and I'm glad to have that bone density data.
Posted 9/19/2011 9:23 PM (GMT 0)
You sound like you've flared and then increased your meds and responded to that increase before.

Yes, I've always been on Lialda max dose, but when I feel a flare coming on I start taking the enemas.

Did you go without the enemas and Lialda between flares?

I only go without the enemas between flares.

Can you add Canasa suppositories? You can use that twice a day. Can you switch to a steroid foam enema? Or try increasing the Rowasa enemas to twice a day.

My doctor never mentioned Canasa suppositories. Are they more mild than pred?

Are you taking the maximum dose of Lialda?

Yes

Can you take psyllium husk caps or powder to bulk up any diarrhea. Commercial form is metamucil.

Will this help with the urgency? That is my main concern right now as I go everywhere with my kids and it's difficult to get to a bathroom in 30 seconds!

How long have you been on the nightly enemas?

about a month

I would try to avoid prednisone, and only use it to stop a severe flare. I think you have to be very bad off to start on prednisone. And I'm not sure you've exhausted all your less toxic options before going to 6mp.

Just suggestions...

Thank you for giving me some options to think about. I really want to just stick to the mild drugs since I'm only in a mild flare. I was thinking about getting some aloe vera juice, activated charcoal and now some psyllium husk to try. I will ask my doctor about Canasa.

Posted 9/20/2011 12:48 AM (GMT 0)
My experience is the 5-ASA drug eventually stop working..timing is different for everyone. Could also be the release type. Have you tried all the 5-ASA?

I'm on Pred now and didn't have any noticeable side effects..but that's different for everyone. I went haywire on Hydrocortisone enema and was told side effects were rear as it's local!

6MP has worst side effects than Pred. as you go from 5-ASA to Steroid to immunosuppressant...it just gets worst.

I'm surprised you're breastfeeding while taking 5-ASA.

The safest way to take steroids is to follow Mck. Jefferies protocol. He used small frequent doses compare to the Pharmaceutics dose. I only know of one doctor who know this protocol as Mck. Jeffereies has passed on. The doc is in Stamford CT and I have an appt to see him in Oct. Hopefully he can switch me from Pred to Hydrocortisone oral. I got down to 5mg of Pred and had to go back up to 20mg. Seem to be a 50/50 change that Pred works and a 50/50 chance you get dependent on it. The odds are not good!
Posted 9/20/2011 2:10 AM (GMT 0)
I know you are not in remission, but when you are it's important to be on some type of schedule and continue the enemas with your orals. I take some form of mesalamine every 24 hours -- a Canasa suppository or Rowasa enema (when I forget the enema I use the suppository)

Canasa is a 5ASA suppository that melts and coats the lower rectal area.

What I've learned on this board is that a flare starts in the rectum and whips up the colon (however high your disease is-- mine is pancolitis) and then it is the last part to heal. So focusing on the stubborn inflammation in the rectum while taking your orals is a good idea. Your orals don't reach far down enough apparently.

Psyllium husk helps regulate you and bulk up your stool. I take the caps because it's more pleasant than mixing it in liquid and then chug a lug.

Your urgency is a result of an inflammed rectum. The inflamed rectum senses the presence of minimal stool and wants to eliminate immediately. Then there are times where you think you have to go and you can't. That's the inflammation. And also the passing of stool can really hurt.

Urgency is just mortifying. I really hope you get this one under control, and stick with rectal enemas/suppositories even if you are in remission. You might only have to do them two or three times a week and increase when you see symptoms coming on.
Posted 9/20/2011 2:31 AM (GMT 0)
Dx'd in Dec 1999...was really messed up back then, did pred for awhile, don't remember the dosage, just that I was taking 9 per day for awhile and started getting boils on the backs of my arms, tapered and never went back until a month ago for a 5 day regimen>25, 20, 15, 10, 5, 0. I asked for this because I was starting such a terrible painful flare! I historically have just toughed it out because I don't want to tamper with any meds. I take Asacol X3 twice daily. So a month ago the 5 day regimen worked WONDERS immediately, but this past week I started declining again, and my Gi put me on another 5 day, after I talked to the nurse on the phone and said i would try to avoid long term pred for as long I could. I have to go see the GI Dr. wed, I see him once a year. The past 5 years have been, not without valleys, but 98% in remission. It just so happens that in my class today (Advanced Chronic Nursing) we covered Addisons and Cushings, the effects of Prednisone and what not. The weight gain and such are what follow the hormonal changes that take place. The pituitary/hypothalamus, aldosterone, acth regulation. It is said that prednisone does not cause any of the bad side effects if taken less than 7 days. After that the pituitary secretion is effected and the side effects ensue. This is also why it is DANGEROUS and maybe even FATAL to stop abruptly. I work out and run, so my avoidance of pred is somewhat rooted in vanity, I do not want to get fat and look bad, but the side effects are have more involved than bad looks. Good Luck
Disclaimer: I got interrupted while writing this so i lost my train of thought, hope it all goes together :-)
-dB
Posted 9/20/2011 3:27 AM (GMT 0)
I just came out of a mild flare and used pred to top it. I was only on it and enema for 2 weeks . started at 4omg for a week 20 mg for 5 days and 10 mg for 2 days. i barely slept lol but it did the job. immodium will help with the urgency. i actually got very constipated while on the meds and didnt need anything to stop urgency. it has been a week since returning to daily maintenance meds and im finally starting to use the bathroom again! its very uncomfortable to be stopped up hen you are used to being empty
lol
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