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Almost 4 months of pred at 50mg a day

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Posted 12/22/2007 8:37 PM (GMT 0)
uuugh, I can't stand it anymore, I miss my chin....where oh where did it go....oh wait, it's underneath my second chin.  I waxed my fu man chu mustache yesterday, that hurt really bad and I have gained 12 pounds and I just ate flan and I am going out to dinner tonite but I want to eat more flan and I am not even hungry, I just want to stuff food in my mouth. 

The thing that really pisses me off today is that I prob wont get to taper until I see my Nephrologist on 1/10 and I need to be on this 4 months before it's considered a failure for my kidneys and I know, Ijust know it's a failure (it never helped my UC) and so now I know that I am going to be on this darn pred for another 3 weeks and I know it's not helping me.........GRRRRRRRRRRRRRR

just needed to vent!  btw, I started pred on 9/7 (and stopped Lialda on 9/7) and went into my hell flare two weeks later, if pred works isn't it supposed to work in in a couple of days and you aren't supposed to get worse before you get better on the pred, right?

I wonder how fast and safe a taper I could do to get off this.  Oh my next step drug I'll lose my hair, so fabulous.  I will be a hairy, moonfaced, bald woman.  Can't wait for that.

Posted 12/23/2007 2:08 AM (GMT 0)
Hi Beth - I haven't stayed on a high dose of prednisone more than 2 weeks before tapering, so I have to be honest and say I can't fully empathize, but I do feel for you, so I wanted to reply to your post. To answer your question, you are correct that you should respond to prednisone pretty quickly if it is going to work for you. For me, personally, I literally am a new woman within 48 hours, though I heard it can take some people a week or so to respond to it. then agaqin, I have the problem of being steroid dependent, so my body loves pred a little too much... :)

As for a taper, you need to go slowly and do it under doctor's care. you have been on a high dose for awhile, so a taper could be tricky, and rushing it can cause the severity of a flare to multiply many fold. I have never tapered faster than 5mg every week, and some people can't go that quickly. again, don't do it without doctor's care.

as for the weight gain, I made a big point of exercising while on pred (once I was well enough to exercise), and that helped me more of less not gain weight on it. also, I just forced myself not to eat after 8pm. it was hard, to be sure, but worked pretty well. so, that would be my unsolicited advise on the weight issue, if you are up for exercise.

I sincerely hope you feel better soon. as for hair loss, I use an expensive but great hair care system called Nioxin. I basicallly don't lose any hair on imuran, and I really think that is because of the Nioxin system, which you can get at most salons. so maybe try that. it might help.
Posted 12/23/2007 2:31 AM (GMT 0)
I can totally sympathize with you, I've been on 40 mg for a couple of weeks now, my BP is high, I can't sleep without a couple of Tylenol PM and a Xanax chaser. I've managed to keep the weight off, barely, by weighing myself daily and just plain will power not to stuff my face. I've been on Prednisone at varying dosages since 4/06 and just can't seem to get off of it. I'm supposed to start tapering again after the holidays. Hang in there!
Meesg
Posted 12/23/2007 8:07 AM (GMT 0)
Beth I know exactly what you're talking about, I was hospitalized for 9 days with a diagnosis of UC on Nov. 

4th of this year.  They started me out on 50mg of prednisone and now I'm on 40mg and they're not even talking about wheening it.  When I left the hospital the bleeding had stopped but started back up a week and a half ago.  As for the side effects of the prednisone,(I look like a chipmunk) I'm not even joking, and I know what you mean about stuffing your face it's almost an uncontrolable urge.  The first couple of weeks weren't so bad, but the longer I'm on it the worse it gets.  To top it all off I've broken out with zits all over my face, even on my chins. eyes  

       Anyways, this is the first time I've ever been on this site and your story was the most similiar to mine so I hope to talk with you.

                                                    

Diagnosed with UC on 11/08/07

Diagnosed with Apl on 5/11/98 & lupus in 2000

Asacol 400mg tabs 4pills 3x a day, prednisone 40mg,  hydrocortisone enema at night, multi-vitamin, probiotic, iron
Posted 12/23/2007 8:24 AM (GMT 0)
hey girl! i feel ya loud and clear.
i was on 50mg for 6 weeks before i started to taper by 10mg every 5 days. im now on 5mg and only have 4 more days to go! yey!! finally.
i thought i was going to go mad.

even tho im down to 5mg, i still cant sleep without my tomazepam sleeping pills, i get the night sweats (and day sweats) still. i still have the shakes all day every day. i cant even read a piece of paper i shake so bad. i look like im going thru drug withdrawals or something.
i wax my upper lip and then less than a week later my honey pie is looking at me and saying "mustaka" under his breath LOL. bloody hell. thank god there is none under my chin. holy crap that would suck.
oh and did i mention im a grouch ass too! yeah, the hubby just loves that!
and...
i eat like a **please watch the language** cow! i salt my food, scarf it down and then i salt the plate and eat that too! oh, and nothing tastes like it used to either. i am sosssssssssssoooooo glad that i have finally tapered down. those were the longest 8/9 weeks ever. i cant imagine 4 months you poor thing. u must be going mad about now.
i havent gained weight, but now that im better its starting to come back a bit.
the pred worked for me at the beginning, but it stopped working cuz my flare didnt go away the whole time and it seemed like it got worse.
then it spontaneously went away 2 weeks ago. havent had a symptom since. nothing. pretty crazy.
but it was cuz of the landmark forum that i did. (but thats another story)

i hope you power thru it and i wish u luck and u go and vent any time! i hear ya - its pretty darn horrible!
i hope i never have to do it ever again!!!!!!

Post Edited By Moderator (Red_34) : 12/27/2007 11:39:51 AM (GMT-7)

Posted 12/23/2007 4:47 PM (GMT 0)
thanks for your responses, I am glad I am not alone but at the same time, I wish that no one else has to go through this.

I won't taper it myself though I really want to, I would be scared if I screwed something up and did something worse to me (with all i've gone through, I most definitely wont!). The azathioprine makes me tired and lethargic throughout the day so I have not gone to the gym but I have a buddy and will be going back after the holiday's we have a gym at work, so no excuse not to do the treadmill for a 1/2 hour every day, right? Also, I haven't lost any hair on the azathioprine, but I think I am going to be going on cellcept next and I don't think I will be that lucky again. I have a friend that uses Nioxin and her hair looks so good ( she just has naturally thin and not a lot of hair).

Yea, I have had some pred flipouts and grouchiness directed at my poor sweet husband....though a couple of times, he was pushing my buttons, I was like honey, don't poke the sleeping bear, it just wont be fun.

Meesh - I had to do the tylenol PM thing a few times myself in the begining, but when I started the azathioprine (generic of imuran) I haven't had to. Does the imuran make you tired?

Kazy - I am so glad you are doing well, I read a lot of your posts and know what a hard time you were having.

Funmomma - Welcome to healingwell, this place has helped me so much, just knowing I am not alone and the things I am feeling are normal and ok. Being on pred I recommend a book called, "Coping with Prednisone" or something like that someone else her recommend it to me and it really helped me deal w/being on pred.

Stay Well!
Posted 12/23/2007 8:57 PM (GMT 0)
Beth, the Imuran makes me want to die. I had a real bad reaction when I was on it. Sick sick sick sick.
Posted 12/24/2007 12:15 AM (GMT 0)
Beth - do you take your imuran at night or during the day? I take it at night, just before bed. I have no problems with drowsiness, so maybe that would help you? I will say, however, that by the end of the day I am really really tired, everyday. I do suspect that that is from the imuran.
Posted 12/25/2007 4:28 PM (GMT 0)
I was on dipentium and prednisone all the time,I tried imuran but got pancrietus. I went to another doctor after three years and have tried different drugs trying to find what works. about a month ago I went on prednisone 20mg a day for 2 weeks weened off and I am in remission .When I started the prednisone I was on 2.4 lialda I did not stop using it eve with prednisone. I also used hydrocort foam pump for ten days with the prednisone. I have been off the steriods for 1 week and seem to be fine when I was starting to ween off prednisone doc doubled lialda. If this does not work I will try remicade.You might want a second opinion from a different doctor it worked or me. There is a saying that somewhere out there is the worst doctor in the world and someone is making a appointment with him. I wish I would have changed doctors alot sooner, all that prednisone is A lazy and unhealthy treatment. good luck.
Posted 12/26/2007 4:30 PM (GMT 0)
I take all the imuran at night usually at 8pm.

Gator - that is great that you are doing so well! I will be going for a second opinion, you are right.
Posted 12/26/2007 5:04 PM (GMT 0)
hey beth, everyones different, but to give you an idea of tapering, my dr. had me taper 5 mg a week, I too was on 50 mg a day, and once i was making progress, every week I would drop 5 mg,

week 1 50mg
week 2 45
week 3 40
week 4 35

etc..... I couldn't WAIT to start tapering, cause pred really messes w/ your mind and body... just remember to go slow... my tapering towards the end, I got REALLY BAD pains in my knees and calves.
Posted 12/27/2007 12:45 AM (GMT 0)
thanks billo! just to have an idea of when I could possibly get off this.......is like seeing a light at the end of a tunnel, I know I will be different but just nice to even think of being off of it! sorry you had the pain in your calves and knees, I can almost imagine how painful that must have been.

I sometimes get cramps in my feet, calves and inner thighs, typically when I am able to get my legs up to relieve the edema (I take fosomax, calcium and potassium to help).
Posted 12/27/2007 4:06 AM (GMT 0)
Beth - I am still thinking about your drowsiness on Imuran.... are you sure that 200 mg is the therapetic dose for you? perhaps you could drop to 175 or even 150? maybe that would help with the drowsiness. I mean, don't do it while tapering on pred, but once get stabilized off pred, perhaps you can lower the imuran? I understand that probably isn't your priority right now. just wanted to through it out there. feel better soon.
Posted 12/27/2007 4:23 PM (GMT 0)
thanks UC, good idea, I will talk to my GI about that.  I do have an appt w/him in January.

Posted 1/1/2008 3:31 PM (GMT 0)

I have had UC for almost 14 years now...  I have been in a pretty bad flare since June.  I had a pituitary tumor removed via endonasal surgery (i.e. brain surgery through the nose)...  I am a 33 year old dude going through hormone hell....My prolacitn levels were extremely high - higher than a lactating female!  My testosterone was almost non-existant...  Well, after surgery, prolacting was instantly back to normal, and testosterone was building up fast....what better time for my UC to go into overdrive and flare!?  Since then my GI started me on 40mg pred.  I was not happy at first, but man, it worked in 2 days!!!  I had solid poop and felt great other than some mild pred side effects starting to kick in.  After 2 wks I started to taper down....and actually I tapered slower than he recommended due to a few trips I had to make for work.  Was down to 10mg and immediately started flaring.  Since the holidays my flare has gotten even worse.  I am back up to 15mg but that isnt doing squat.  Last night we went to my sister-in-law's for new years eve...I had to crap about 3 times in an hour trying to play cards....before that we stopped at a friends house to say hello for 30 minutes...I had to use their bathroom twice!!!

I am so fed up with this disease...I started w/ left-sided but now my whole colon is rotted...  Personally I am having a hard time dealing with the fact that I may need surgery.  The doc's next step is Imuran or Remicade...I am not thrilled about those....and my wife & I are really trying to have kids...which is what flagged the fact that I needed some brain surgery since my hormones were out of whack....so I get that fixed and now may have to take some serious poisonous drugs that cant be good for fertility.

Sorry....had to vent....I have had this for a while and am sick of it, not to mentionon scared of cancer....

Posted 1/1/2008 3:53 PM (GMT 0)
One thing I have noticed at least for me is that I had to REALLY bug my GI to get me off the Prednisone when I was on it for several months in 2001. Since then, he is always trying to get me back on it, for 7 years all I ever hear the guy say is Prednisone! I am on it right now, he must be happy. I only went on it because my joint pain was so unbearable. It is supposed to be only 2 weeks of it, we'll see. I am having soo much trouble sleeping, I don't remember having that problem before (maybe cause I had a 6 month old who never slept?) but anyways, I have just been on it a week so far and I hate it and always fear the side effects of bone loss and things. I would make sure your doctor knows how much you want to get off of it. If my horrible memory serves me right, it didn't seem to help my UC that much in 2001, but it is helping the joint pain this time. Good luck.

To mbx5, I am sorry you are going through all that. I personally would rather take Imuran or Remicade than Prednisone. I know a few women who had healthy babies while taking Remicade, not saying it is recommended, but it is more important for you to be healthy foremost and it may actually help you.
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