Anyone able to take sulfazalazine but NOT Asacol/Lialda/Canasa/Rowasa?

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emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/11/2008 8:46 AM (GMT -6)   
I've read that most people experience more side effects from sulfazalazine than the mesalamine 5-ASAs, but that some people who can't tolerate mesalamine CAN take sulfazalazine.

Is there anyone like that on this board? I seem to have trouble with mesalamine and am trying to figure out options (ones that are least likely to make me feel even sicker).

Thanks!
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/11/2008 11:22 AM (GMT -6)   

emory - I hope someone answers you on this one.  Tomorrow I see my NP about why I stopped the 5-ASA including Rowasa and Colazal.  They worked but the side effects kept getting worse so I stopped two weeks ago Saturday.  Not many problems since.  I do have symptoms such as little left-sided discomfort, sweating and nausea at night (which I have had always) and vertigo.  BUT - no D and no bleeding that I can see.  Only one or two BM a day.  I have taken 1/2 Imodium a couple times when I went out.

Anxious to find out what my doc/NP recommends when I see her tomorrow. ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


lightlove
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/11/2008 1:40 PM (GMT -6)   
Please let us know what your ND says. I am going to one today too. I'll go ahead and pay that $250 for the stool tests. He says the independent lab finds what the typical labs don't find. I don't have money to waste so I hope I'm doing the right thing. I'm in misery today as I broke out with welts and a terrible rash covering my whole body. It itches and hurts at the same time. They gave me antihistimine for it but it doesn't seem to help...



kops2da said...
emory - I hope someone answers you on this one. Tomorrow I see my NP about why I stopped the 5-ASA including Rowasa and Colazal. They worked but the side effects kept getting worse so I stopped two weeks ago Saturday. Not many problems since. I do have symptoms such as little left-sided discomfort, sweating and nausea at night (which I have had always) and vertigo. BUT - no D and no bleeding that I can see. Only one or two BM a day. I have taken 1/2 Imodium a couple times when I went out.

Anxious to find out what my doc/NP recommends when I see her tomorrow. ElaineNY

emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/11/2008 1:44 PM (GMT -6)   
Lightlove, can you please clarify what stool tests you're talking about? Sorry to hear you're so miserable.
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 9/12/2008 11:08 AM (GMT -6)   
I do well on the sulfasalazine, didn't do well at all on Asacol. I find the Rowasa enemas (mesalamine) to be helpful when needed. Haven't tried Colazal, Lialda, Canasa.
*******Donna*******
 
South of Boston, Ma
 
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.
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/12/2008 11:11 AM (GMT -6)   
Good to know, Donna. Thanks! If possible, can you describe what problems you had with Asacol?
Thanks again --
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 9/12/2008 11:26 AM (GMT -6)   
I had been enjoying a very, very long remission. Once I started the flare, my new GI put me on Asacol, I expected to see the same results that I had with the Sulfasalazine, but I didn't. I think I actually got worse. It was the worst flare I had since being dx'd. I don't think I experienced some of the side effects, but I just had D, bloody at times, but D several times a day for almost 2 1/2 years. Once I started on the Sulfasalazine, I was in remission within 2 1/2 - 3 months.
*******Donna*******
 
South of Boston, Ma
 
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.
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/12/2008 11:53 AM (GMT -6)   
Okay, for me mesalamine seems to bring on nausea and other side effects. So glad to hear you're in remission, and thanks for your advice!
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/12/2008 7:02 PM (GMT -6)   

emory - saw my NP today and we agreed that I would not try the Colazal again.  It made me sick - more nausea, sweating, dizzy, generally like flu.

I am going to try the Rowasa enemas I have every other night and see if that helps the few remaining symptoms I have - very few.  Nausea is occasionally in morning, NO diarrhea, one or two BMs a day, no bleeding - just a little dry blood end of stool.  She told me to not worry about that. She will consult with the doctor and call me Monday about further medication or? and see how it goes with the Rowasa over the weekend.

I still have a little discomfort (awareness I call it) on left side sometimes.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/12/2008 8:23 PM (GMT -6)   
Elaine, sounds like you're doing great! I'm so glad for you. In a nice coincidence, I spoke with my doctor today and we agreed that my next step (after a few more days of proctofoam) would be to try Rowasa enemas. Even if they make me sick, I'm going to try to power through at least a week. Are you on the 2g or 4g dose of Rowasa?

Thanks for following up with me -- you are so thoughtful!

Take care, and keep me posted --
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/13/2008 11:47 AM (GMT -6)   

emory - my Rowasa is 4g but I can only get in about 1/2 at a time.  I have to do them over the toilet which doesn't help a lot.  Anyway, NP said 1/2 every other day might just do what is needed to get completely healed.  Well, last night I used a little less than 1/2 - kept it in all night.  Had two BMs this morning - first one remnants of meds a little - cramping a little more and then second BM was streaked with blood.  Have not seen that much visible blood for two weeks.  I am to try again tomorrow night and then call the NP.  GEEZ!  I thought I was going in right direction.  Well, she is talking to doctor tomorrow and see his opinion, etc.

Good luck to you.  I had so many side effects I stopped both Colazal and Rowasa for two weeks.  Now wondering if you can get the same side effects from the enemas as the pills.  I don't feel very good today.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every other night for now.
 
 
 
 
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/13/2008 12:36 PM (GMT -6)   
Elaine, what a bummer! I'm sorry you feel bad today, especially when you've been doing so well. I think you can get the same side effects from the enemas as the pills -- it's all the same medicine, just a different form of delivery. It's so hard to have setbacks like this! Hang in there. I hope tomorrow night will bring improvements.

Has your doctor talked to you at all about doing a five-day burst with prednisone? Mine told me it worked better for Crohn's than colitis, but that it might be something to try. I am very scared of steroids, but might be willing to try this if the Rowasa makes me too sick.

Sending you my best,
emory
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/13/2008 1:38 PM (GMT -6)   

Doc and NP told me that steroids were the LAST resort especially for me - my age, sensitivities, etc. The immune suppressants would be next but I don't want them because I need knee surgery and you can't take them with that.  I would certainly consider steroid enemas but no steroids by pill!!  I suppose it would depend on how bad everything would get!  I will NEVER have surgery unless it is for a life-threatening problem.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every other night for now.
 
 
 
 
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 9/13/2008 3:47 PM (GMT -6)   
Steroids are a bad risk for me, too -- I already have insomnia and osteopenia, and am unusually sensitive to medications. I might be willing to try five days only...

Some people on here seem to have good luck with the steroid enemas.

My mom needs knee surgery, too. She's having it done in early October. Knowing her situation, I can imagine the extra pain that's causing you.
40 years old and female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
UNTIL 9/4/08: Canasa 1000 mg suppositories nightly, 25 mg hydrocortisone suppositories in a.m.
CURRENTLY: Proctofoam at bedtime
Effexor 37.5, Clonazepam .5 mg (or more) and Trazodone 50 mg for sleep
2.5 mg methimazole for thyroid
Recently started probiotic (Garden of Life Primal Defense Ultra) and acupuncture
Osteopenia (and I haven't even taken steroids!)

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