To take pred or not?

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AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 9/14/2007 5:35 PM (GMT -7)   
I have been on Lialda for 18 weeks, now. Started with 2 pills/day and increased to 4/day and still there since August 1st.  Started flaring again a week Sunday and was hoping  it was due to my menstrual cycle (this happened late July--hence the increase in Lialda).  I waited four days before calling my GI to "check in" about the bleeding--only 1-2/day.  I thought it would go away.  I was prescribed 40mg Prednisone for 2 weeks and wanted to SHOUT, "NO WAY" to the GI nurse.  Instead, I said, "crap!"  I haven't taken it yet, thinking it will all go away and only resurface right before my cycle. Well, after 1 1/2 days of no bleeding, bleeding is now back. 
 
What to do?  Take the darn prednisone?   I don't know!  Is this possibly still the menstrual cycle or the antibiotics I took 2 weeks ago for a sinus infection.  Also, my GI didn't agree that those with UC could flare due to menstrual cycle????
 
I am honestly scared of the pred based on bad things I've seen and heard from others on it.   Again, what do you all think???  How did you get past this and just take it?? 
 
Just need y'alls support and comments.  Thanks ahead of time :)
AlabamaBabs
Pancolitis diagnosed 5/07 during a flare
that started 3/07 through 6/30/07:  2 Lialda 1.2 mg/each per day
flare 7/24/07 through 8/1/07 and then, 4 Lialda 1.2 mg/each per day since 8/1/07 and doing good until
most recent flare: 9/9/07
 
 


BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 9/14/2007 5:57 PM (GMT -7)   
Really???? The GI told you that a flare doesn't come w/periods?  Let me tell you, I always flare during my period, even if it's a mini flare, it's still there.  I consulted w/my OBGYN about this once and she explained, in a very scientific way (and why I can't be specific), that the digestive tract directly affects the reproductive organs and visa versa.  The worse time of the month for me is period time--I have even contemplated a hysterectomy, but OBGYN didn't think removing the ovaries was a good idea--I just read a research article last week that stated that women who have their ovaries removed before menopause have a high risk of dementia, something about the termination of needed estrogen.  As far as Prednisone goes, I take it when the benefits outway the negative--for me, can't stop going to the bathroom, I mean bad, can't control the bleeding for an extended period of time, you get the point.  You know Protofoam works for me, its an anal steroid, was told has no long-term systemic side effects.  How about good ol Rowasa enemas?

Dx Ulcerative Colitis 1999; IBS; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Bentyl, Prozac, Endocet (as needed), multi vit, probiotic, fish oil caps x2/day, calcium 1200 mg./day, Prednisone (off/on, unfortunately).


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 9/14/2007 6:52 PM (GMT -7)   
Thanks BigLucy. Just wondering how long your flares last? Before your cycle starts, during or both? I am really considering another GI, as even the CCFA website discusses flares during menstrual cycles. How could my GI not consider this? Surely there are other women patients of his?
AlabamaBabs
Pancolitis diagnosed 5/07 during a flare
that started 3/07 through 6/30/07:  2 Lialda 1.2 mg/each per day
flare 7/24/07 through 8/1/07 and then, 4 Lialda 1.2 mg/each per day since 8/1/07 and doing good until
most recent flare: 9/9/07
 
 


Mildewval
Veteran Member


Date Joined Dec 2004
Total Posts : 1229
   Posted 9/14/2007 10:22 PM (GMT -7)   
Have you tried entocort? it is like pred but the side effects are not the same. It is much easier on your body. It does take a bit longer to work, but I think it is worth it.

My symptoms are worse right before my period. I get god awful cramping (not menstrual) and more trips to the bathroom. It started after I went off the pill but has gotten better the longer I've been off.
Pancolitis since October 2004
Currently experiencing symptoms- blood and mild pain. Have started ANOTHER round of enemas.
My drugs of choice: Asacol 2-3 times a day (if I remember), Imuran, Canasa suppositories every other day, probiotics, fish oil, Iron, multi-vitamin
My other therapies of choice: Yoga, walking, my animals, and whining.


quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 9/14/2007 11:25 PM (GMT -7)   
try rectal 5ASA meds such as Rowasa or if you're not in the US..Salofalk. The retention enemas would be a better first start than the steroid enemas.

I wouldn't do pred unless I exhausted the other meds available.

You do have choices....you don't have to take pred.

The hormonal changes during periods can definitely have an effect on exacerbating symptoms.

Rectal meds....did the doc never mention them to you? Have you not mentioned them to your doc?
If not...do try them.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 9/15/2007 12:57 AM (GMT -7)   
Well, my periods are pretty bad, probably not typical. My symptoms last for approx. ten days--usually start w/bad headaches, fatigue, and increase the closer I get to my actual flow days. The first day of my actual period I feel like a truck has run over me, sometimes I cannot walk. The first day I have bad diarreha, increased blood and mucus, stomach pain and cramps. My flow days only last for 2-3 days b/c of the birth control pill and gets much better after that. The pill really helps me. The reason I know UC affects my menstral cycle is b/c I've had bad periods since I was a teenager, but when I was Dx w/UC they became almost unbearable. For all those wondering, as I said, I've explored hysterectomy option, herbal/supplements (primrose oil, flax seed oil, various "women's" formulas, wild yam cream, etc., etc....and acupuncture, relaxation, yoga, pilates, meditation, walking....AND still the same. But, on the bright side, I still do a lot of the physical stuff, when I'm able and take good herbs/supplements. I feel for having several chronic conditions, I'm in pretty good shape, physically I mean. Oh, I forgot the most important thing that gets me through all the bad days, pain medication (I wouldn't be able to funtion on those days without them).
Dx Ulcerative Colitis 1999; IBS; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Bentyl, Prozac, Endocet (as needed), multi vit, probiotic, fish oil caps x2/day, calcium 1200 mg./day, Prednisone (off/on, unfortunately).


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 9/15/2007 8:03 AM (GMT -7)   
I am going to research the Rowasa and Entocort to have more options than pred! Thanks!! My GI will be back on Tuesday, so hopefully I will be able to say, "what about........." The last time my GP thought I was allergic to Lialda (I was not), my GI said, "You are in the driver's seat." Let's see if he agrees with that this time. I would love to have an "extra product" --now doesn't that sound ridiculous?! so that during this time of month, I could use the extra product in addition to the Lialda and get over the flare!! Sounds good to me. If only our GI's would see things from our prospective and not so clinically.

Thanks y'all! I really am so glad this forum is here and we can help one another through our UC/CD trials and tribulations!
AlabamaBabs
Pancolitis diagnosed 5/07 during a flare
that started 3/07 through 6/30/07:  2 Lialda 1.2 mg/each per day
flare 7/24/07 through 8/1/07 and then, 4 Lialda 1.2 mg/each per day since 8/1/07 and doing good until
most recent flare: 9/9/07
 
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 9/16/2007 6:13 AM (GMT -7)   
Well, as of this morning, I've succombed to taking the prednisone. 
 
My bathroom trips increased from 2-3 times/day Wednesday and Thursday to 5 times Friday to 8 times yesterday all with blood in the stool. 
 
I understand what others are saying, now. When the blood and pain get to a certain point, it is time for something different.  My hope is that in 2 weeks, my dose can be lowered and I can be off of the big P sooner than later.  I am getting ready to start Weight Watchers at work, so that can only help, I pray, to ward off the munchies and weight gain. 
 
Please keep me in your thoughts and prayers and I will do the same for all of you and those not here, too. Support going through all of this really makes a difference.  I know my husband and family are there, but it's also nice to have you all, who are actually going through many similarities.  I hope that after this stint of P is over, perhaps my GI and I can talk about the Rowasa and Entocourt and the other possibilities out there.  
AlabamaBabs
Pancolitis diagnosed 5/07 during a flare
that started 3/07 through 6/30/07:  2 Lialda 1.2 mg/each per day
flare 7/24/07 through 8/1/07 and then, 4 Lialda 1.2 mg/each per day since 8/1/07 and doing good until
most recent flare: 9/9/07
 
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 9/16/2007 8:51 AM (GMT -7)   
When I was having 25-30 BMs per day with lots of blood, I was never offered pred from either of the GIs I've had. I'm glad I wasn't, after reading all the possible side effects. I seem to be the exception to that here though (not being offered it). I was just put on Asacol and later on Rowasa. Although my new GI said the majority of UCers have to go on pred at some point in their lives. I don't really understand why your doctor didn't offer the enemas to you before the pred, but I'm not a doctor and don't know all your symptoms/history so I'm sure you made a good choice.

I wish you the best of luck with the pred and getting over your flare. Keep us posted as to how it's working.
23 years old
Diagnosed with UC March 2007
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 9/16/2007 3:59 PM (GMT -7)   
It could be that the antibiotics you were on recently caused this flare-up. I hope you'll be able to taper down the Pred after a week or so. Good luck & take care. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon; should be back in remission soon)

AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 9/16/2007 4:42 PM (GMT -7)   
Thanks Old Hat, I really enjoy your comments, suggestions and words of wisdom on this forum. :) I do feel so much better today, with no blood whatsoever, but also very hyper and very thirsty. I am going to call the GI nurse tomorrow and try to get off of this ASAP! Hope your remission comes soon, too!
AlabamaBabs
Pancolitis diagnosed 5/07 
2 Lialda/day increased to
4 Lialda/day since 8/01/07
40 mg. Prednisone for two weeks starting 9/16/07
Activia; multi-vitamin; extra calcium supplement; omega 3's

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