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WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 7/21/2008 1:26 PM (GMT -6)   
Hi Everybody,
I have been a lurker for some months now. I was diagnosed with ulcerative proctitis since March 2005. I was put on asacol and went into remission. after 2 years of remission I had started tapering my dose. I didn't know that I needed to remain on my meds for the rest of my life. My GI was pretty short with my when she discovered the ulcerated area in my rectum. Its about 1 inch! Anyway, last August I started IVF treatments. My first cycle resulted in a negative. I still was in remission w/ my UP and by that time only on 3 pills a day. I did treatments again in November and stopped my asacol. I did get pregnant but had a missed miscarriage at 9 weeks. All through the beginning of the pregnancy, without my asacol, I was fine.
 
After my d&c (Jan. 08) one week later I started bleeding. The bleeding and mucus just kept getting worse. They put me back on asacol and gave me the lecture about stopping my meds (I know). I started taking 9 pills a day. Then they added in canasa, then they switched to a hydrocortisone enema, etc. I went away for 2 weeks in february and the situation just got worse. After my trip I had another colonoscopy (Feb 19th) and it showed SEVERE PROCTITIS.  I finally surrendered to prednisone. I was soooo SCARED of the drug but I didn't know what my options were. they put me on 40 mgs and after a week I was still bleeding tablespoons of blood and feeling very weak. I then went in for a flexsig and was finally admitted to the hospital back in March for IVF steriods, liquid diet, etc. I stayed there for 6 days. When they finally released me...I was released on 60 mgs of prednisone with a quick taper to 40 mgs because I was going BONKERS on the steriods. I also was taking rowasa enema in the morning and hydrocortisone enema at night. After a month of that course ...tapering the prednisone, adjusting other things, adding vitamins, etc...I went into remission. They also switched me to colazal - 9 pills a day.
 
So I am in remission...thinking of my next IVF cycle, just got back from Negril with my husband and friends in May. Had a blast! Taking my meds...and BOOM ...Father's Day I had blood in my stool. so I called my doc and she said start taking the canasa in the morning and lectured me again about staying on my meds throughout a pregnancy - I KNOW. Lesson learned.
 
So the symptoms never got better in June but I really just went with the flow. I then had another sigmoidoscopy July 8th and it showed still SEVERE PROCTITIS. My Doc basically said I had to GO BACK on prednisone at 40mgs, canasa in the AM, and hydrocortisone enema at night...and we should called my IVF clinic and cancel my cycle. I was already 4 days into my shots. Too make this LONG STORY SHORT.....
 
I am taking VSL#3, fish oil, bee pollen & royal jelly, vitamins, staying lactose free and taking all meds. I was not stressed before the cycle. In fact, my husband and I were looking forward to it. We were finally ready to get pg after my m/c.
 
So last week, July 14th I went and saw Dr. Mark Peppercorn http://www.bidmc.caregroup.org/display.asp?leaf_id=11929 for a second opinion. He basically said my course of treatment was okay and there was no need for IV steriods. He told me that VSL#3 is the BEST probiotic out there and the one that they actually have data to support. I was told about NSAIDs, and everything else I had read about.
 
So....he said after you have a few good days you can begin to taper your prednisone. I took it and tapered the prednisone after one day of no bleeding! I still had mucus. So I tapered on Wednesday, 7/16 and then last Friday afternoon I had blood. I called me Doc and she said that i must of tapered too quick and to go back to 40mgs of prednisone. I took the 10 extra as soon as I got home and have been on the 40 predisone since. I had a little blood saturday night and have not had since.
 
Its just a guessing game...she said if I have 3 good days I can begin to taper again. She tapers me in 10 mgs doses.The Doc at Beth Israel said you can try 5mgs or 10mgs. Whatever works best since the SIDE EFFECTS KILL ME. So if I taper Wednesday (assuming today is a good day and tomorrow)....is being on 40mgs of prednisone for 15 days good enough to start a taper? Also I am still on the canasa in the AM and the hydrocortisone enema at night and my 9 pills of colazal...ALL FOR AN INCH!!!
 
Anybody else experience what I am goin through? Any advice? I really want remission so I can go back to IVF. Is proctitis as serious as UC?
 
Thanks for all your help!
WishfulMA
 

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/21/2008 3:18 PM (GMT -6)   
I can tell you that Mark Peppercorn is a great GI. I saw him for many years at Beth Israel, great, great doctor. Good Luck with everything, hope you see some improvement. How about trying the cortenemas again after tapering the pred???
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/21/2008 3:26 PM (GMT -6)   
Hi Wishful! Welcome to Healingwell :)

A pred taper is a finicky thing. For each person it can be a little different. A few things I've found - don't taper until you're stable. The three days your doc mentioned might be a little short - perhaps try five days. Another thing - tapering by 10mgs is too much for me! I must taper by 5mg or less.

Proctitis is a form of UC. A severe proctitis may be worse for a patient than a mild pancolitis (involvement of the WHOLE colon). There is more about the types of UC in the resources thread at the top of the thread list.

I hope you're able to find something that works for you!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 7/21/2008 4:59 PM (GMT -6)   

Dr. Peppercorn did suggest staying on the canana in the morning after the pred is done and perhaps doing a 2x a week hydrocortisone enema to keep me in remission. I was only able to see him for a second opinion because he is just consulting now.

I did just have accupuncture. That seems to relax me. I am just nervous that I am going to NEVER get off the prednisone without bleeding.

I am just hating it so much that I want to taper Wednesday but maybe I will do it in 5 mgs increments. Last time in March/April after the hospital I dropped it 10mgs ever 6 days.

I am so depressed right now because of the IVF business and I know my stress level is high. I need to put that in the back of my mind and focus on getting better.

Oh - is it GOOD to take garlic??

Thanks for the nice welcome!


My Cocktail:
colazal - 9 pills
prednisone -40mgs (hope to begin taper 7/24)
canasa suppository -AM
hydrocortisone enema - PM
VSL#3
fish oil
bee pollen/royal jelly
garlic
calcium & vitamin d 2x a day
prenatal vitamin plus extra vitamin c and b12 complex
AND ACCUPUNCTURE
(not to mention 20mgs of lexapro and klonopin as needed)


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 7/21/2008 6:16 PM (GMT -6)   
Hi Wishful, im so sorry about your loss! I have had one loss (D&C also) and tons of chemical pregnancies.

As far as the pred goes, i have to taper 5mg at a time. My GI keeps me on 40mg as long as it takes until i have NO symptoms (no blood, no mucus, mild/no gas/pain), then i begin my taper.

I can say that when we were ttc i was told that you "should" be in remission before ttc otherwise it can make pg really tough and there is also risk of miscarrage if you are flaring during early pg. So, it's important that you get things in order first. I know how it is to be emotionally ready to start ttc again, but your health is the first order of business.

I did clomid for my 1st pg (took us 3 yrs ttc) and did not have UC. I was dx after that pg, and was in remission for a yr before ttc my second. We used injectables/IUI for the second, and i flared w/ my positive pg test! LOL.... the doc said it was likly the hormones/injectables/stress of injecting, ect...I never really got the UC back in control during that pg. It was very draning and tough.

Anyways, i hope u find success soon! Feel better!
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/21/2008 6:50 PM (GMT -6)   
not much info from me re. the IVF- my UC started right after I delivered my daughter! but I also saw Mark Peppercorn- loved him! Awesome doctor. Pred tapers stink- it's the true "one step forward, two steps back" game. I find if you taper too quickly, you only wind up extending the length of time you're actually on pred, cause you have to bump up your dose again becasue you've tapered too quickly!!!! Aarrgghhhhh!!!!! As frustrating as it is, sloooooooow is the way to go- the last time i took a course of pred it took me...jeez, practically 4 months to get from, like 20mgs/day to zero. And that last couple weeks of 2.5mgs/day is a killer. It's like "Why?!?!?!" I'm pretty sure I would taper by 5mgs every two weeks, then from 5mgs to 2.5mgs for 2 weeks, then 2.5mgs every other day for a week or 10 days.... you get the picture! And you know what? I haven't been on pred since February & I still bleed probably 2 days out of the week. Not dripping into the toilet, but blood on the tp & blood on the stools. I don't tell my GI because he may want me back on 'roids & I just won't do it again. I used to freak out about it, then read on here that many, many people see blood on a regular basis. I know when it's bad, when I'm really flaring, as opposed to mild symptoms. Whatever. But good luck with the taper- take it slow. And oh- I always started on 60mgs pred & stayed at that crazy high dose for at least 2 months before starting a taper. I once tried to start a pred course at 40mgs/day, it did nothing, I had to up it to 60mgs, & wound up on the darn drug much longer!



diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 

Post Edited (Eva Lou) : 7/21/2008 5:53:37 PM (GMT-6)


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 7/22/2008 6:25 AM (GMT -6)   
is it the side effects of the prednisone that messes w/ the taper? or it is the blood/symptoms come back?

My Cocktail:
colazal - 9 pills
prednisone -40mgs (hope to begin taper 7/24)
canasa suppository -AM
hydrocortisone enema - PM
VSL#3
fish oil
bee pollen/royal jelly
garlic
calcium & vitamin d 2x a day
prenatal vitamin plus extra vitamin c and b12 complex
AND ACCUPUNCTURE
(not to mention 20mgs of lexapro and klonopin as needed)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/22/2008 7:51 AM (GMT -6)   
it's the symptoms coming back- I don't think the side effects would have any effect on a taper at all- they are what they are! Unfortunately, in many cases they seem to increase as the dose is lowered! A taper of 10 mgs every week sounds pretty fast to me- but then again maybe my GI & I are more conservative when it comes to that. Speaking from experience though (I've done 3 long courses of pred), the slower you taper the more successful you'll be in getting off it entirely. Stinks!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/22/2008 8:17 AM (GMT -6)   
I know you're wanting to get off the Pred as quickly as possible, but you really have to do it at the rate your adrenal glands can adjust and start producing normal body steroids again. Otherwise, you just relapse with your symptoms and end up being on the Pred longer than you would have been otherwise. Some of us need to taper as slowly as 5 mg. every 10-14 days.

Also be aware that we can become steroid dependent, unable to wean from the steroids without going back into flare. Because they're not intended for long-term use, we're most often put on an immunosuppressant or biological at that point. But also be aware that many women have taken Pred throughout a pregnancy to keep themselves in remission, and there's no evidence whatsoever that it harms the baby.

I hope you're able to taper off and feel better very soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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