Sulfasalazine-who takes it and what are your side effects and what's the effectiveness for you

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therearemiracles
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Date Joined Dec 2006
Total Posts : 3588
   Posted 7/28/2008 6:52 PM (GMT -6)   
I was wondering who takes sulfasalazine and what side effects has it had on you or has it really helped? Asacol makes me very jittery.
Colonoscopy & Endoscopy 7/27, Left sided colitis and near cecum (mild)
Stopped Colozal 10/1/07 was on it for 7 weeks, side effects
Working with new doctor getting stool, urine and blood tests, waiting for results. starting back with ASACOL  6/1/08
 


seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 7/28/2008 8:45 PM (GMT -6)   
I'll bump the thread, but I recently changed to sulfasalazine and it works pretty well -- much, much better than Asacol.  I had some low grade side effects for a couple of weeks but they've all gone away.  That was mostly headache and nausea.  They did go away though, just had to ride it out.  (I understand slowly raising the dose might help with that.  I didn't do that.)
 
On Asacol, 3-4 very bloody, loose bowel movements a day and all-over abdomenal pain plus urgency.  Terrible gas.  In hindsight, I was a mess.
 
Since the sulfasalazine, 4-5 soft but formed bowel movements.  Occasional localized pain, very little urgency.  Trace amount of blood once or twice a week.  No gas.  (Well, everyone farts.)
 
I like the stuff and wish someone had recommended it, oh, five or six years ago. . . .
 
 

BumTum
Regular Member


Date Joined May 2006
Total Posts : 304
   Posted 7/28/2008 9:11 PM (GMT -6)   
It worked very well for me with my symptoms. However, I suffered from depression while I was on it. I took a break from it for several months and tried it again. The depression returned. Now I'm on Asacol.
  • Pancolitis since 5/06 at age 50, IBS since childhood
  • Degenerative Disc Disease/Spinal Stenosis - L4 and L5
  • Prescribed: Asacol, Atenolol, Zoloft, Synthroid, Menest, Crestor 
  • Prescribed: Xanax & Hydrocodone as needed
  • OTC:  Probiotic 15-35, Multi Vitamin, B Complex, Turmeric, Fish Oil, Biotin
 
 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/29/2008 6:06 AM (GMT -6)   
It's been my "wonder drug". I don't have any side effects at all (crossing fingers that it stays that way). I've been on it since Dec or Jan. Was on it many years ago for many, many years and didn't have a problem then either.
*******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.
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/29/2008 7:03 AM (GMT -6)   
It kept me in remission for 10 years. The only side effect was nausea and that only happened when I had to increase the dose for minor flares.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


therearemiracles
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Date Joined Dec 2006
Total Posts : 3588
   Posted 7/29/2008 8:02 AM (GMT -6)   

my tablet is round with a yellow/orange coating, one one side it say G500 (maybe for generic) and the other side has a dip in the middle like you can cut it in half. Would you cut in it in half or take whole, to lessen what side effects I might get?

I'm scared to take anything that will make me go to the bathroom worse right now. I have a fissure and my bum is burning like no other. Would you start a new med with a bad bum?


Colonoscopy & Endoscopy 7/27, Left sided colitis and near cecum (mild)
Stopped Colozal 10/1/07 was on it for 7 weeks, side effects
Working with new doctor getting stool, urine and blood tests, waiting for results. starting back with ASACOL  6/1/08
 


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 7/29/2008 8:19 AM (GMT -6)   
Mine look the same as yours therearemiracles. The "G" stands for Greenstone Labs. I haven't found the right dose for me yet. I started out in October taking 2 in the am and 2 in the pm. I had terrible headaches at first, but I got though that and the meds began to work. I did great for a couple of months and then BAM! Here I am in a moderate-severe flare. I have nausea almost every day all day. I'm currently taking 4am and 4pm. That tends to vary too. Sometimes taking 4 all at once will make me sick so I will take 3,2,3. Perhaps if I didn't sway all over the place with them I would get better. My doctor isn't any help there tho so it's all trial and error.

I took Asacol for years, but it was too expensive once I lost my insurance. During a flare I ended up having 2 panic attacks and haven't gone back to the Asacol since. The pills were very small and I would probably go back on them again if I ever get insurance. However I did notice that most of the pills would come out whole during a flare.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 4 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)


therearemiracles
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Date Joined Dec 2006
Total Posts : 3588
   Posted 7/29/2008 8:23 AM (GMT -6)   
Thank you for responding, Asacol did the same thing to me. I would have a panic attack and poop my pants and it was all while I was driving. I would shake afterwards and then cry. Did this med at first other then the headaches give you diarreah or anything? My bum is raw, I couldn't stand to go to the bathroom any more. Seriously, I just want to drink chicken broth for a couple of days to let things calm down, but I would starve. I really wish a women was here with me at work to take this stupid pill that is staring at me! I just ate some apple sauce and now I'm drinking chix broth, but I'm afraid of that pill. Why am I so chicken? From what I'm reading this pill is better on the gut.

Colonoscopy & Endoscopy 7/27, Left sided colitis and near cecum (mild)
Stopped Colozal 10/1/07 was on it for 7 weeks, side effects
Working with new doctor getting stool, urine and blood tests, waiting for results. starting back with ASACOL  6/1/08
 


Old Hat
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Date Joined Feb 2007
Total Posts : 5169
   Posted 7/29/2008 8:36 AM (GMT -6)   
Sulfasalazine comes in a powdery round pill, but also in an oblong enteric-coated tablet. The latter is easier on the stomach; you have to swallow it whole so that release of the drug occurs in the intestines. Hopefully, Malka will reply to you on this topic because she has ca. 30 yrs of experience taking sulfasalazine + she has been under treatment with one of the best IBD gastros in the U.S. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/29/2008 8:52 AM (GMT -6)   
I had the same problems with the Asacol and they were not dissolving, I was pooping them out whole, so no wonder they weren't working.

How many are you supposed to take per day? I take six per day and try to spread them out as much as possible. 7 am, 1 pm , 7 pm. Mine are the same manufacturer also, Greenstone. I wonder if the enteric coated ones would dissolve if you had a problem with the Asacol not dissolving. That would be a concern to me.

IndianaUC, I don't believe that you are supposed to take more than 2 at a time. Are you taking them with any food?

Therearemiracles: How about adding some rectal meds? They should help you quite a bit. I know it's tough to think about doing that when your butt is soooooo raw, but it should help calm things down. I've done cortenemas and rowasa enemas, not at the same time, started on the cortenemas, then when things calmed down I switched to the rowasa enemas... Good Luck, hope the two of you see some improvement.
*******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.
 


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3588
   Posted 7/29/2008 8:53 AM (GMT -6)   
Hi Old Hat, you helped me Colozal and that I took for 7 weeks and there was no change.

Colonoscopy & Endoscopy 7/27, Left sided colitis and near cecum (mild)
Stopped Colozal 10/1/07 was on it for 7 weeks, side effects
Working with new doctor getting stool, urine and blood tests, waiting for results. starting back with ASACOL  6/1/08
 


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3588
   Posted 7/29/2008 8:57 AM (GMT -6)   

Hi Old Hat, what I meant was you helped me when I started Colozal. You were so kind to keep writing me. I was interrupted here at work and I had the send the email real quick. Sorry about that.

I hope this works. I will take it at lunch. I was prescibed 2 in the am 2 in the pm.

I have mild from what they say. If I'm mild, I pray for those who are moderate. This dis-ease no one should have. Pray for me and I will pray for you.

Do you think taking a rectal canasa will help or since I have a fissure will it kill me?


Colonoscopy & Endoscopy 7/27, Left sided colitis and near cecum (mild)
Stopped Colozal 10/1/07 was on it for 7 weeks, side effects
Working with new doctor getting stool, urine and blood tests, waiting for results. starting back with ASACOL  6/1/08
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/29/2008 8:57 AM (GMT -6)   
Also, are you drinking plenty of water with your meds? You should drink a good 8 ounces of water with them.
*******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.
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/29/2008 9:10 AM (GMT -6)   

I take the Greenstone lab pills, eight a day, two every six to eight hours.  I asked about increasing to the max dose, 12 a day, but I was told I would probably get more side effects for a similar benefit.

You probably have some experience with soothing a sore bum, but a dab of zinc oxide always works well for me.


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3588
   Posted 7/29/2008 9:12 AM (GMT -6)   
what's zinc oxide? Where do I get? Is it a ointment?

Colonoscopy & Endoscopy 7/27, Left sided colitis and near cecum (mild)
Stopped Colozal 10/1/07 was on it for 7 weeks, side effects
Working with new doctor getting stool, urine and blood tests, waiting for results. starting back with ASACOL  6/1/08
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/29/2008 9:24 AM (GMT -6)   
I have also used the Tucks medicated pads, they have helped me in the past.
*******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.
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/29/2008 10:30 AM (GMT -6)   
Zinc oxide is an ointment, and I think I usually find it by the other poison ivy stuff.  There's usually a store-brand version, and it's usually pretty cheap. 
 
It's also sold in small tubes for sunscreen for the nose and face, but look for the larger tubes of it.
 
I put a dab on a piece of toilet paper and, um. . . you know what to do.
 

IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 7/29/2008 4:52 PM (GMT -6)   
This is nice. A thread where more than one person is getting help. I hate it that more people have to suffer this disease, but it's nice to know that when I'm scared and afraid that I can come here and there are people to answer my questions or to learn that It's not just me.

munchkindd, my GI prescribed me to take 4 in the am and 4 at night. I don't really trust him tho. He seems to be a good doctor, but he's not that thorough. I fear that because I don't have insurance that I may be getting passed over for proper treatment. One thing is for sure, when I finally get insurance back I will run the full gauntlet of testing to make sure this disease hasn't gone any further.

I do take them with food, but 4 at once still makes me sick. I decided myself to take them 3, 2, & 3 during the day to lessen the nausea that it causes. When I'm not flaring they don't make me sick, but when all inside of me hurts I get sick.

On the painful bum thing....I use hemorrhoid ointment. I use it at night because it feels weird there, but it does the trick. Lots of trips to the loo cause my bum to burn so I use the ointment when needed.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 4 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/29/2008 6:45 PM (GMT -6)   
Canasa may help heal your fissure. It's work a try. Although you might want to put a bit of lube on the tip before insertion.

Zinc Oxide is also known as Desitin or other baby rash ointments - the white ones. Very soothing on the sore bum. I like the Aveeno one as it doesn't have any scent.
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


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/29/2008 7:06 PM (GMT -6)   
I think even as a newcomer I have a suggestion for that sore bum.  My doctor prescribed Proctofoam for rectal healing and it is used often for hemmroids.  It has a small amount of hydrocortisone for healing but the best part is the pramoxine which is a topical anesthetic.  It feels warm at first (nice warm) and then you don't feel it because is gets a little numb down there.  Very soothing.  It is helping me a lot after about 10 days - that and the Colazal.
ElaineNY
 
68 yr. old granny
New UC (with rectal bleeding and diarrhea)- 3 months ago, colonoscopy showed mild
UC rectal and little above.
Using Proctofoam once a day - added Colazal 3X2
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D
Finally seeing improvement 7/23/2008
 
 
 
 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/29/2008 7:12 PM (GMT -6)   
IndianaUC,
Why don't you try 2 at a time, 4 times a day??? Even when I was prescribed 8 pills per day, I believe it was supposed to be 2 pills 4x a day.
*******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.
 


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 7/30/2008 8:24 AM (GMT -6)   
munchkindd,
My doctor prescribed me 4 pills at once twice daily. I'm not caring for this doctor much tho. I have been doing 3 in the morning, 2 in the afternoon, and 3 at night. My stomach does better with that routine. They always make me nauseous when I'm flaring. I take more because I think I'm in a moderate flare. I don't know what level it is, but it's enough to where I have pain that causes me to shake and sweat when everything reaches the colon and I have to go to the bathroom. I have some pretty strong cramping and pain throughout the rest of the day. I honestly don't know what would be the best number of pills and how often I should be taking because my doctor just tells me to up them equally morning and night. What he fails to hear me on is that the more I take the more nauseous I get.

How long has it taken everyone on Sulfasalazine to reduce a flare? Weeks? Months? Longer?
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 4 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/30/2008 9:04 AM (GMT -6)   
I was in a real bad flare for 2 1/2 years. Once I started the sulfasalazine, back in Dec 2008 I was put on 6 per day, 2 tabs 3x a day. It took roughly a month and 1/2 to 2 months to go into remission. I was also doing rectal meds at the same time.
*******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.
 


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 7/30/2008 9:15 AM (GMT -6)   
I was put on Sulfasalazine back in October. I don't remember how long it took me to get better, but I did. After a few months I found out that Kmart had the pills much cheaper so I went to them. I ended up with a slightly different pill. I took the different pills for a couple of months and in that time I got worse again. I called the doctor to get an appointment and also called the pharmacy. I got them to order the previous pills again and started to get better, but then fell back down and have been in a pretty bad flare since. It seems as though I'll never get better. The cramping and urgency is getting worse, but I'm sticking with these pills because they made me better once. I'm hoping they'll do it again. I would like to try some sort of rectal med, but I really can't afford $360 a month. sad My last colonoscopy(2003) revealed that 44cm of my colon was ulcerated. Previous to that back in '98 it was only 10cm.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 4 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/30/2008 9:24 AM (GMT -6)   
don't know if it gave me kidney disease or not. But it basically kept me in remission as long as I took it. The major thing I did not like about it was sometimes it would bother my stomach, but just a swirly sick feeling. Other than that I had bright yellow pee.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 25mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

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