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What's the taper, what's the prednisone?

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Posted 12/18/2009 8:07 AM (GMT 0)
What symptoms of prednisone use are derived from the taper, and what symptoms are just from being on prednisone for say, 3 months. Can we distinguish? I have lost a lot of hair and it's popping up on my face. (white, thank goodness). On a 2.5 mg taper every 6 days, now at 12.5.

Oh, what's this I hear about 10? Every time I've hit 10 on fast tapers (twice) I've failed and had to go back up. I'm doing well at 12.5 but I heard that 10 is the scary number. Why and does it have to be necessarily?
Posted 12/18/2009 10:04 AM (GMT 0)
Hey Ellen


When I was tapering too fast I couldn't get down past 20mg... So now that I'm only going down 2.5mg per week, I'm now at 7.5mg and haven't had any trouble.. Maybe it has always been the going down on the dose too fast that was the problem.. Look at it this way.. when you are at 10mg and drop down to 5... that's a 50 percent drop... not as bad as if you were at 40 and dropping to 20, but still a big jump to the system I think...



when I get down to 2.5.. I'll probably do that for a week, I don't know how to break my pills up any smaller than 2.5 unless they make doses lower than that... Maybe take a teeny piece off with my teeth for a week? LOL.. I'm almost done and so far so good!!!
Posted 12/18/2009 11:32 AM (GMT 0)
How can you go down to 7.5? My pills are 10 mgm with a divider in the middle, so I can go down to 5, but 7.5 and 2.5??? Right now I am on 10 mgm. My blood glucose is starting to go whacko again. It was down to within normal limits too . Last night my 3 hr pp was 157. It should be below 140. Could have been the two cookies I ate . Can't wait to get off the prednisone completely. I receive my third Remicade infusion on the 31st. It has helped me tremendously .
Posted 12/18/2009 12:04 PM (GMT 0)
For the taper its a throbbing HEADACHE for me. Total dropoff in energy till body picks itself backup and adrenal glands get back in the game.
Posted 12/18/2009 1:26 PM (GMT 0)
I've been tapering 5mg per week. Hit 20mg and starting having flare up symptoms. My doctor prescribed me more pred, but I have to go in this morning for a blood test to see if I can take 6MP.
Woo, lol :/
Posted 12/18/2009 6:48 PM (GMT 0)

journey2health said...

What symptoms of prednisone use are derived from the taper, and what symptoms are just from being on prednisone for say, 3 months. Can we distinguish? I have lost a lot of hair and it's popping up on my face. (white, thank goodness). On a 2.5 mg taper every 6 days, now at 12.5.

Oh, what's this I hear about 10? Every time I've hit 10 on fast tapers (twice) I've failed and had to go back up. I'm doing well at 12.5 but I heard that 10 is the scary number. Why and does it have to be necessarily?


When people hit 10 pills/day of pred that's when typically their symptoms really start to re-appear. Pred is ust a band-aid med/booster, used until maintenance meds kick in or for a short break from a long and/or severe flare. That's why when you start to taper and hit about 10 pills a day most people will notice symtpoms comming back.



:)
Posted 12/18/2009 6:51 PM (GMT 0)
Yes, I believe most people are taking the 10mg strength pills when they go on pred...going down to 7.5, means in accordance to amount of pills per day not mg of pills per day, know what I mean?

:)
Posted 12/18/2009 6:55 PM (GMT 0)
I took it to mean 10 mg not pills..... You ask for smaller mg pills with a slow taper and it makes it easier to divide. Or you just quarter the 10 mg pills which isn't too hard with right knife.
Posted 12/18/2009 7:31 PM (GMT 0)
Id di not have any side effects from my tapers. I did try to taper too fast and started have UC symtpms. I had to go back up to 30mg and start the taper all over again. I tapered more slowly the second time and had no problems and no side effects from going off the pred.
Posted 12/18/2009 7:47 PM (GMT 0)

Prednisone comes in a 1mg, 2.5mg, 5mg and 10 mg tablets. To the best of my knowledge if your tapering off this med the physician would be decreasing the number of mg you use per day. 

Do check with your pharmacist re dosage strengths available.  Take care and good luck with your taper. 

Kitt

Posted 12/18/2009 8:12 PM (GMT 0)
I didn't have trouble with the pred taper in terms of failing and having to go back up, BUT I was on Humira and at that time, the Humira was working perfectly (it no longer does, though it still keeps things pretty good). I did a very slow taper as well-I went down 5mg/week until I got to 20mg and from there on out, it was 2.5mg/week. It seemed like it took forever. I don't remember about the pills and if they were 10mg each or what, but I know I was cutting pills all the time.

Anyway, I will try and remember what symptoms I had from the pred use and which were from the taper:

From pred use:
-moon face
-weight gain (50 pounds in a 2 months period!)
-severe acne
-facial hair growth
-back hump
-complete lack of menses
-sleeplessness
-thinning skin/easy bruising
-muscle weakness (mostly in my legs)

From pred taper:
-hair loss-about 1/2 my hair volume
-severe paranoia and emotional problems
-Severe joint pain
-severe exhaustion

The other symptoms mostly went away as they had appeared. But I have been left with a couple-the back hump and weight gain have not resolved, and while I have not been trying as hard as I could to lose, I have been trying and the scale just isn't moving. Also, while my cycles came back, they have been a mess ever since and I have been trying supplements and such to no avail. I am not sure how to resolve the menstrual issue-I am going to have to see a doctor about that one.

I still have some bouts of paranoia that I didn't use to have either, but most of that has resolved as well too. (as well it should-I have been off of pred for over a year) I will have to have no other choice but death to go back on pred again. I know it works for some, but it is absolutely not worth the side effects for me personally.
Posted 12/18/2009 8:46 PM (GMT 0)
Laura....you are a prime example of what my GI doctor explained to me about prednisone use via Remicade. He said the list of side effects from prednisone is waaaaaaay long but side effects from Remicade are short. Took me awhile, but I finally believe him. I have the hump plus.....osteoporosis, high blood pressure and now I have to watch my glucose like a hawk as my 2 hr pp skyrockets...all due to prednisone. Hopefully, I will be able to get off it soon. Now down to 5 mgm.
Posted 12/18/2009 8:49 PM (GMT 0)
Hey Christine :)

The way I go down to 7.5 is to take ONE 10mg pill and cut in half.. then I take one of those halves and cut IT in half.. therefore I can take 7.5mg... So I'm taking only 3/4 of a 10mg pil = 7.5mg Then down to half a 10mg pill for 5mg, then down to 1/4 of a 10mg pill for 2.5mg. THen I was even thinking of just taking a SMIDGE of the 1/4 pill for another week or so.. just to make it as slow as possible before stopping altogether. That's how I do it.. :)
Posted 12/19/2009 2:46 AM (GMT 0)
Christine-I hope you can get off of it soon as well. It really is awful stuff-at least for me. And I feel like I don't even know what else may have been affected that is beneath the surface and I just don't about it!

And I was one of those people who had practically every possible side effect. They didn't even believe me that the issue of my menstrual cycles was caused by the pred because they had never had anyone have that as a symptom. And now I really have no idea how to fix that-we want more children, and I am not even sure that I will be able to now, given how off everything still is...we'll see what happens.

Anyway, prayers that you can get off of it completely.
Posted 12/19/2009 2:51 PM (GMT 0)
Lookingforthecure......I hear ya! Yesterday I tapered to 5mgm....today diarrhea . Guess I better chop those little suckers up. UGH I hate prednisone.
Posted 12/20/2009 9:50 PM (GMT 0)
I'll go to 10 mg tomorrow from 12.5. I'm trying to forrtify myself with two packs VSL-3 per day plus two tabs. pysllium husk, plus the assortment of things below....

Not sure if I should go 10, 8, 6, 4, 2
or 10. 7.5 5 2.5 0

and how long these tapers should last....

lAny advice. My doctor is the type that wants a 10 to 5 to 3 to 5 to 3 to 3 then off.

That taper makes me nervous to the 10 to 5 part..

ellen
Posted 12/20/2009 11:35 PM (GMT 0)
Lookingforthecure hit on it. Prednisone suppresses your adrenal glands that produce corticosteroid naturally. Once you get down to a certain level they have to start making it again and it does not happen easily in my experience. I am currently at 15 mg tapering from 40 of the prednisone. I too have a hard time differentiating side effects from the drug versus the taper. I don't deal well with stress, emotional or physical, when I am on 40 or tapering. When I come off I get horrible joint pain.

I am new to this site and have yet to explore or figure out how to post my stats.

Anyway UP diagnosed 1993 when I first tried to quit smoking. Back and forth for years. Quit smoking in Feb. 2007. Diagnosed UC August 2007. Currently in my 3rd flare. Second one was the worst. Currently: Prednisone, Asacol 3 tablets 2X day, Anucort Supp. as needed. Past: Lialda, Rowasa for UP, 3 remicade infusions to put me in remission in second flare as Prednisone had no effect.
Posted 12/21/2009 12:20 AM (GMT 0)
Lookingforacure

Looking for the cure, what is the taper schedule and for how long should each taper be to create that "gentle ride" you are talking about.

Ellen
Posted 12/21/2009 1:29 AM (GMT 0)
Ellen, I am sure LFTC will chime in, but my taper (which was 10, 7.5, 5, 2.5, off-I started the 2.5 increments at 20mg) was a week at each dose. So it was:

Full dose:40mg (20 AM, 20 PM)
week 1: 35mg (20 am, 15 PM)
week2: 30mg (15 AM, 15PM)
week 3: 25mg (15 am, 10 pm)
week4: 20mg (10 am, 10 pm)
week 5: 17.5mg (10 am, 7.5 pm)
week 6: 15mg (10 am, 5 pm)
week 7: 12.5mg (10 am, 2.5 pm)
week 8: 10mg (all AM from that point on)
week 9: 7.5mg
week 10: 5mg
week 11: 2.5mg
week 12: off

There were MANY times I wanted to speed it up, but I had heard so many times about people doing that and ending up back on the higher doses that I couldn't risk it. I needed to be off of that awful medication with as few problems as I could manage, so I did exactly what they told me to do. It took forever, but aside from the issues I had just getting off of the pred like joint pain, hair loss and paranoia, I didn't have UC troubles.

Like the others have said, your adrenal gland basically stops working on its own while you are on pred-tapering slowly allows it to kick back in as you lower the steroids.

Good luck!
Posted 12/21/2009 1:51 AM (GMT 0)
Good luck with that prednisone. I was on it for about 10 months. from diagnosis of UC all the way through trying other medications (Asacol, Colazal, Sulfasalazine, Remicade, Humira) Anyways, had 3 different ups and down taper programs. All of them were tough on my body, especially skin on back, and chest. Bumps all around on the back and chest most of the times. Sometimes, about 10,000 small tiny spots on the back, it was quite weird, even for the dermatologist.

Anyways, i have heard a few different ideas on tapering prednisone. Going down 5mg/week 10/mg week etc... Some saying do 20mg one day 10 the next, 20" 10 the next. 15 the next, ect...

when I finally did come off prednisone completely in Early November of 2009, I had been trying 5mg daily for a month, and the last month about 2.5 mg daily (I started the most recent taper schedule in May at 60mg/day)

What I really recommend is trying a non-medicine based solution. I was diagnosed a year ago and for two months now, medication FREE.
All because I met a girl who had UC for ten years and she told me about the diet she was on while being medication/symptom free for 3 years.

I made a website called ** 5. No advertising or links to advertising or "Spam" is permitted (including signatures). 

  • Advertising or Spam is defined as posting a link for the purpose of selling, soliciting or promoting by someone that has ownership or other "vested interest" to the web site involved, including efforts to promote other online forums or web sites by web site owners. 
  • If you are a web site owner and have a link that fits into this category that you want to share, please submit it to our resource directory and we will review your submission. 
  • Posts and links about fundraising (including nonprofit fundraisers) are NOT permitted. 
  • Only links to personal home pages are allowed in signatures and member profiles. Links must be appropriate and abide by rules #1-4 or they will be removed. 
  • Links to helpful web sites (commercial or otherwise) are allowed when they are posted by someone without any "vested interest" AND whose purpose is NOT to solicit, advertise, promote, fundraise, etc.

which talks about it. It is basically fruits, vegetables, nuts, honey, meats/poultry and that's about it.

Good Luck, no need to be on steroids, and no need to be on any medication, just need to know where to go in the grocery store.

**I know you are trying to help, but you need to check with the administrator of the forum before posting your site that includes advertising, etc. thanks!



Frank

Post Edited By Moderator (Lonie) : 12/20/2009 9:02:08 PM (GMT-7)

Posted 1/16/2010 11:05 AM (GMT 0)
I started my PRED regimen at 40-mg almost 2 months ago. This is my first flare and first time on PRED.

10-days: 40 mg
10-days: 30 mg
10 days: 25 mg
10-days: 20 mg
5-days: 15 mg flare symptoms returned

When I got 5 days into my 15 mg stage my flare symptoms came back. I went back up to 20 for ten days and my flare symptoms are gone and I am having mostly normal BM's again (it is so nice not to have "D"!). I am going to try going down by 2.5 MG instead of 5 mg and may do 10-day stages instead of one week.

I am wondering how long I should stay here (at 20 mg) before I start my taper -- it has been 14 days on this dose?

Post Edited (tryingtoheal) : 1/16/2010 9:30:19 AM (GMT-7)

Posted 1/16/2010 4:03 PM (GMT 0)

tryingtoheal said...
...I went back up to 20 for ten days and my flare symptoms are gone and I am having mostly normal BM's again (it is so nice not to have "D"). I am going to try going down by 2.5 now and may do 10-day stages instead of one week.

I am wondering how long I should stay here before I start my taper?

I think 10-14 days without flare symptoms is seen as enough time to then start tapering, but also see how your body feels.

Sometimes staying on just an extra few days before tapering isn't that big a deal and can give you a bit more reassurance...especially since your taper schedule of 2.5 mg every 10 days will take about 2 months to complete.
Posted 1/16/2010 7:43 PM (GMT 0)
I did something pretty different, but it worked for me. I can't remember exactly how long I did the 10 mg every day and every other day, though.
40 for 5 days
30 for 5 days
20 for 5 days
15 for about a week (waiting to see my GI)
10 for?
10 every other day for?
Posted 1/17/2010 1:51 AM (GMT 0)
Hi Ellen,

For me, the number was 20 mgs. It didn't matter how long I was on 25 mgs for. The bleeding would come back the moment I decreased my dosage to 20 mgs.

I was taking prednisone when I did fecal transplantation. The fecal transplantation put me immediately into remission. The bleeding stopped completely, and I would have gone off the prednisone cold turkey if it were not for the serious side effects one can get from doing so. I got the following:

My joints hurt. I learned what it felt like to have arthritis--not something I want to get.

My joints would make loud popping noises. When I say loud, I mean that everyone could hear the loud popping. I remember having to walk down the stairs, pop, pop, pop, pop, pop...
Posted 1/17/2010 4:59 PM (GMT 0)
I was diagnosed with uc (left side) in 1997. The first few yrs I didnt have that many flares but when I did I was given prednisone, which helped tremendously. The last 7/8 yrs the flares have become more frequentl. I have been in the hospital numerous times. While in the hospital I was given iv steroids and put on prednisone after leaving the hospital. So I have been on prednisone regularly for the past 5 or 6 yrs. 2 yrs ago I started having leg pain. Went to the dr and I was diagnosed with arthirtis. Was told to take tylenol. The pain gradully got worse so I went back to the dr this past yr. They did a bone scan and found that I had avascular necrosis in my left hip due to prolonged use of prednisone. I also had jaw surgery 2 yrs ago due to deterioration of the jaw bone. They now think that was probably caused by steroid use also. My right hip is now starting to hurt and the drs. said I would probably wind up with the necrosis in both hips. I am looking at hip surgery but keep putting it off because i would have to take antbiotics and this flares up my colitis. It  took me over a year and a hospital visit before I got the last flare under control. I now take remicade every 8 wks, which helps. I had an allergic reaction to remicade when I was first being treated with it and was scared to take it. But the drs give me tylenol , benadril and a medrol shot before I take the treatment. So far so good. I am sorry this is so long but I want people to know that long term use of prednisone is not good for them. Dont get me wrong, prednisone helped me greatly with my flareups but now I am paying for it. This might not happen to anyone else but sometimes the treatments can be as bad as the disease. And believe me uc is a bad disease.
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