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seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/11/2008 6:19 AM (GMT -6)   
After years of taking Asacol, my doctor switched my script to sulfasalzine in an attempt to reign in the colonic inflammation as well as the joint pain that I've been having.
 
It's only been two days or so, and my happiness with it may be premature, but I thought I start a thread to discuss this medication.  There seems to be a reluctance to prescribe it.
 
So far, I haven't noticed many side effects.  The urgency is a little different and my stool is a little looser, but I seem to be tolerating it well.  Still bleeding.
 
On the plus side, the raging gas I thought was a symptom of uc might have been a side effect of Asacol.  The gas is pretty much gone, and I have to say, my gut feels sooo much better.  The night cramps seem to have subsided, too.
 
Any other good experiences with sulfasalazine?

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/11/2008 7:02 AM (GMT -6)   
Absolutely............I have had UC for 26 years. Was originally put on sulfasalazine when first dx'd. I went into remission and after taking the meds for quite some time, decided to stop taking them because I was doing so well. Was med free for a long time. Flared again 2 1/2 years ago, my new GI put me on Asacol right away, I asked about the Sulfasalazine, telling her that's what I was on before. She said "There are now newer, more improved drugs" and put me on the Asacol. I was on that for 2 years with the worst flare I ever had since being dx'd. Had alot of gas. She was ready to start me on 6mp and I asked if I could try the Sulfasalazine first before going on the 6mp, she said "Okay". I started it in December and was in remission a month later. I also find that alot of Docs don't bother to try this drug. I know that some people are allergic to it because of the sulfa. This is also one of the cheaper meds for UC which I believe may be one of the reasons it's not prescribed, but I swear by it for me, I was very nervous about the idea of 6mp. There are so many people on this forum that are on very strong meds, and I think they are soooooo brave. I really wish that more Docs would try patients on Sulfasalazine because the side effects are not as bad as alot of other stuff being prescribed. But, what works for some, doesn't necessarily work for another, but still.....why not first try the less toxic drugs.
I'm glad that this is working for you. I wish you continued success with it.
*******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 2 x a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/11/2008 7:19 AM (GMT -6)   
Sulfasalazine kept me in remission for 10 years. I have found memories of it!

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


KaseyF
Regular Member


Date Joined May 2008
Total Posts : 65
   Posted 6/12/2008 9:08 PM (GMT -6)   
I'm late to this discussion, but hope I can still join.

I've been on Sulfasalazine for exactly 30 days. I have to say, I'm pretty sure this drug is working for me. I don't know if this means I'm in remission? I feel more normal than I did before being diagnosed. I used to go at least five times a day as "normal" behavior (i.e. before the flare that sent me to the GI started). Now I go two-three and most are formed or semi-formed. Lately, I haven't had any urgency either, which is a recent, pleasant surprise. No bleeding for quite some time now.

I haven't experienced any side effects of the pills except I am kind of lightheaded still. I did get a blood test yesterday, so I'm awaiting the results to find out my iron levels. I'm not really blacking out anymore like I used to when I first started on the meds, which is good, but I'm still dizzy sometimes.
I'm actually worried now my iron levels will be bad and I'll have to switch meds, because I've been thrilled with the sulfa so far. I hope, if the sulfasalazine is causing some anemia, that there's a solution which will allow me to continue using the pills and take iron supplements.

The pills are kind of large and sometimes hard to swallow, but I'm willing to ignore this because I like everything else about them. And I like that they only cost me $10 a month. And I do find I'm a slave to eating at certain times a day so I can take the medicine, which has become a bit problematic for me as my schedule constantly changes and it's very hard to pin down a rigid routine. But I know this will be the case with any medicine I take, so it's not an issue with sulfa.

Anyway, my experience with sulfasalazine has been great so far. I feel awesome. I never have to go to the bathroom during the day, only in the morning and sometimes at night. That means I'm not constantly worried about being near a bathroom. I did a lot of traveling the last few days without any hope of bathrooms and it was not an issue. Not even a concern.

Glad it's working for you guys too!
27 years old, Female, NYC
Diagnosed with severe UC on May 13, 2008 (though I'd apparently had it for years)
500 MG Sulfasalazine x4 a day
Daily Multi-V, Folic Acid


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/13/2008 7:06 AM (GMT -6)   

Not really late to the party, KaseyF.  I just haven't added, waiting to see happens.  So far, so good.

I've had a touch of a headache for the last two days but it could be the weather.  A couple of Tylenol sets the world straight.  The pelvic/ hip pain seems a bit better, but my Achille's tendons are still really, really sore.  In the morning I feel like I have peg legs.

I have more energy but the underlying fatigue is still there, very deeply set.  I got home last night and just didn't think I'd make it up the steps; I felt like sleeping on the sidewalk.  (I'm also waiting for blood work.  I'm hoping for the recommendation of an iron tab or something.)  All-day urgency is gone replaced by sudden urges. 

I feel a little more food sensitive.  On Asacol, I ate pretty anything I wanted except fried foods.  I think the painful gas sort of masked other gastro distress.  With the gas gone, it seems I can feel things more as they transit my colon.  I met up with a friend for lunch yesterday and he remarked that I wasn't guarding my gut any more, so that's a good sign.

I've taken a few doses without food and without problem, KaseyF.  You might give it a try.  Sometimes I take it with a banana or a couple of crakers with peanut butter.  I don't eat a meal with every dose.  (And I knew I had a big mouth but I must have a big throat, too.  Yesterday I swallowed two sulfas and two Tylenols in one gulp!)

Anyway, it seems to be working and I feel much better.  Not 100% by any means, but things are improving.  Thanks for the replies, everyone.

 


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 6/13/2008 8:01 AM (GMT -6)   
I tried the Sulfa.. it was great for my joint pains and the abdominal pains but a few days into taking it I started getting these insane headaches that would wake me thru the night and Tylenol couldn't even combat them !! I went back to my DR and he said to try taking only one tab per day rather than 4 which helped.. but alas all the pains came back so I discontinued them and am back on Asacol which kept me in remission for 4 years until now. :) Good luck with it, it helps many people from what I have read !!!!!!!
Jenn 26/female
Ulcerative PANCOLITIS diagnosed 2004
Asacol 3 pills once/day
Daily Vitamin for Women and Folic Acid
Currently in a flare since March 6 !!!!!!!!!!!!!!!!!!!!!!!


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/13/2008 9:05 AM (GMT -6)   
seconder, did the GI give you a scrip for folic acid along with the sulfasalazine?
*******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 2 x a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 6/13/2008 10:51 AM (GMT -6)   
I tried Lialda, Asacol and Colazal and they all made my symptoms worse. I think I'm allergic to Mesalamine. Would I be able to take Sulfasalzine? Or does that have Mesalamine in it?
31 yr old female, currently pregnant.
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse, MUCH worse
Not taking any more meds for now. Trying a holistic approach.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/13/2008 10:58 AM (GMT -6)   
sulfasalzine has mesalamine in it.

It was great for my UC, I was on it for 5 years, then went to Asacol. I'm hypersensitive to 5ASA's and cannot take any of them = (

The only things for me was I had to take it w/food.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
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 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/14/2008 7:21 AM (GMT -6)   

No, munchkindd, he didn't.  He mentioned iron and folic acid but wanted to wait for the results of blood work to give specific recommendations. 

I have to say I'm a touch annoyed with him at this point.  (This is my regular physician.) Blood work was Monday morning but five days later, I can't get ahold of anyone for the results and I haven't gotten them in the mail.  Maybe my expectations are skewed.  Meanwhile, I'm just beat, and the tests were to get to the bottom of that. . . .  Frustrating.  Part of me hopes the tests show something because if he waves it off as "just a symptom of uc" I might throttle him.

At any rate, the sulfa is still working.  I'm in the bathroom more but best I can tell the bleeding is subsiding.


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/23/2008 7:25 AM (GMT -6)   
Well, about two weeks now on the sulfasalzine. It's working pretty well, I guess. Or, I should say, it's working better than Asacol ever did and I'm annoyed I stayed on Asacol for so long. . . . I would definitely recommend it.

More trips to the bathroom, and more occasional urgency, but I'm much more comfortable throughout the day. Still some blood and mucus but it has been substantially reduced. A bit of light sensitivty, some headaches. The join pain (for which the sulfa was prescribed) is as bad or worse than ever.

Still really worn out. In hindsight, the exacerbation of the flare in May was probably worse than I thought of it at the time. Blood work came back within the normal ranges, but I have another follow-up tomorrow. My work schedule ramps up substantially in a month and a half, and I'm a little worried I won't be able to keep up.

/Dear diary. . . .

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 6/23/2008 8:24 AM (GMT -6)   
Seconder-- have you tried using Rowasa enemas? If you have inflammation in sigmoid colon and/or rectum, they would likely speed your relief from bloody mucus. In addition to light sensitivity + headaches, sulfasalazine can get you sunburn so beware of skin exposure, too. There are some members writing here who've been on it for decades, but they take care to get frequent blood work. Sulfa is not the best component for bonding 5-ASA, just the least expensive. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/23/2008 8:47 AM (GMT -6)   
I second Old Hat on adding the Rowasa enemas to your regimine.........They really help. I wish you continued success with the Sulfasalazine and hope that your head aches go away. What dosage did you start out at on the Sulfasalazine?
*******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 every 5th day. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/23/2008 9:26 AM (GMT -6)   

Thanks for the suggestions.

My doctor prescribed the sulfasalazine because of the joint pains combined with the colitis.  I hadn't really considered it until then.  From what I've read it may take several months for it to work in that regard.  I'm on 8 (500 mg) tabs a day (QID).  I will discuss routine blood work with the doctor tomorrow. 

The headaches are infrequent, maybe once a week, so it's not that bad.  A Tylenol makes them go away.  I'll be using sunscreen.

I haven't tried Rowasa enemas in several years although I have a standing script.  I don't have a bedtime as much as I fall asleep; I rarely sleep more than four or five hours at a time; I hate the inconvenience of waiting to void the things in the morning.  That's all to say that my compliance with them is irregular and the results are less than spectacular.  Besides, my bleeding has always shown high in the colon during colonoscopy and most of my abdominal pain is right around the splenic flexure.  Even if I did comply well, I'm not sure they'd help much.  I keep thinking I'll give them another try, though.

I hope the sulfa keeps working.  (But if I can't get rid of the fatigue, and there's no other explanation for it, it may be time to get rid of the colon.)

Thanks again for the input.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 6/23/2008 1:03 PM (GMT -6)   
Asacol made me feel worse. Sulfasalazine has been my maintenance drug for several years in which I've enjoyed remission with only minor blips when I eat things I shouldn't.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 6/23/2008 1:06 PM (GMT -6)   
Well I wish I felt like Sulfasalazine were my miracle drug. I am in a bad flare up and my dr changed me from Lialda to Sulfa and I am still in the bathroom with bloody D and urgency and pain. Maybe it takes a while to kick in

Diagnosed with Ulcerative Colitis March, 07






Medications:]Colazal 3 pills 3x a day</STRIKE>

<FONT color=black> Prednisone


Lialda - 2 pills in the morning w/ food.


mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 6/25/2008 11:18 AM (GMT -6)   
When I was first diagnosed with UC I was on sulfasalazine. I went into remmision in 3 weeks but after 2 months I started getting severe headaches. No medications could get rid of these headaches. My doctor stopped me from using sulfasalazine and after 2 weeks I went into a flare.

stogieFL
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 6/30/2008 1:03 PM (GMT -6)   
I have to say that I am a bit botherd that my doc ignored tha fact that azulfidine had me in remission for almost 7 years to place me on Lialda on this first flare. He says its the same ingredients without the sulfa with more dosage. I just think it's a good marketing by the maker of Lialda. However it do not feel like either drug takes you to remission. Something else needs to kick start the remission. I am trusting mr Doc at the moment because I would prefer not having the sulfa in me, but the prednisone didn't take me into remission and the 6-MP is really kicking my butt with nausea and fatigue.
 
Age: 39
Diagnosed UC: Dec 1999
Remission Cocktail: Azulfidine, Prednisone, Paragoric Liquid
 
UC Flare: March 2008
Current Meds: 4 Lialda, 2 Purinethol, 5 mg Prednisone (tapering)
Other ailments: HBP, Gout


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 6/30/2008 1:42 PM (GMT -6)   
Count me in as a fan of sulfasalazine. I have tried Lialda and Asacol and I want to switch back to Sulfasalazine. I get headaches regardless of which of the 3 I use. Lialda and Asacol give me horrible, painful gas (sulfasalazine did not). Lialda also made me lose some hair. I had a severe allergic reaction to Colazal and had to go on Pred to resolve the allergic reaction (not the flare).

Sulfasalazine is generic, so it's cheap. It also doesn't have the pharmaceutical salesmen to back it up. When I started the other meds, I always got free samples first from the doctor. I didn't for sulfasalazine. The newer drugs have bigger marketing budgets.

I find it rather amusing that my cat also has colitis. he is taking sulfasalazine and it works great for him!

KaseyF
Regular Member


Date Joined May 2008
Total Posts : 65
   Posted 6/30/2008 1:45 PM (GMT -6)   
stogieFL said...
However it do not feel like either drug takes you to remission. Something else needs to kick start the remission.


I disagree. I was put on Sulfasalazine and nothing else in May, and I'm pretty much 100% sure I'm in remission now. If I'm not...I can't even imagine how I could improve anymore. I'm going to the GI next week and hope to get the official word. But I'm down to 1 solid BM a day, without urgency, always in the morning.

No other side effects that I can see? My joints ache a bit, mostly my wrists and knees, and I am a lot more tired than i used to be, but I think that's just par for the course with UC in general and not sulfa. My blood work came back on the very low side of normal, so they are keeping everything as is for now unless it changes. (I'm still getting the low-iron black outs once in a while, but I'm less concerned now that I saw my results).

So I don't know how much more I can improve, really. I'm doing better than I did before UC. I used to go 3-5 times a day for the last 10 years or so. Going once a day is a dream.

(My menstrual cycle has been a bit strange the last two months, it seems to be lasting two days longer than normal and kind of procrastinates and lingers it's official arrival. I assume this is related to either the meds or my new vitamins, but since it always arrives on time and eventually runs it's full course, I'm less concerned about this too.)

Anyway, I'm a huge fan of sulfasalazine. I feel like it's done a miracle for me.
27 years old, Female, NYC
Diagnosed with severe UC on May 13, 2008 (though I'd apparently had it for years)
500 MG Sulfasalazine x4 a day
Daily Multi-V, Folic Acid


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/1/2008 8:49 PM (GMT -6)   
Glad to hear it worked for you, KaseyF.

I'm still a little on the fence. I definitely feel better than when on Asacol. I'm more than annoyed that I stayed so long on a drug that ultimately wasn't really working. Worse in a way, had I taken the steroids I would have probably bounced back and forth not realizing that the Asacol wasn't doing its job. There's been a huge improvment with the sulfa.

I just feel better and more optimistic.

I am going more often, about four-five-six times a day, but the bleeding is all but gone. The all day urgency is gone and the intermittent urgency I do have now is less painful and less frequent.

Still fatigued and the joints still hurt. I think my hip is getting worse, and sitting for any time is rough. I don't have much energy for a lot of activities or hanging out. But, on the upside, haven't had a headache in awhile and there's only a bit of nausea now and then.

The sulfasalazine had been a big improvement but I'm still not ready to accept this as normal for the next 40-50 years. I hope it improves its effectiveness in the next few months.

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/2/2008 6:07 AM (GMT -6)   
seconder............I'm with you on being upset with how long I stayed on the Asacol.  I was on it for 2 years without it helping me at all.  That's one mistake I will never make again.  Just wish my GI had agreed to switching earlier (as I requested) to the sulfasalazine. yeah
*******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 every 5th day. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/2/2008 7:27 AM (GMT -6)   
I'm glad someone else knows how I feel, munchkindd.

I'm trying not to get too upset or angry about the Asacol, but I did take it for, like, six years. . . . (Okay, my compliance for the first couple years wasn't great but, hey, whose is?) And for more than a year, all I get is grief from my doctor for not taking prednisone or 6mp or Remicade. Because, you know, 5-ASAs, they're all the same. Urgh.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30376
   Posted 7/2/2008 9:43 AM (GMT -6)   
have you done the rectal med route as well as the oral? There are steroid and 5ASA rectal meds.

All 5ASA meds aren't the same...there's also Dipentum...check that out, maybe it's worth a shot?

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~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 !!!


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/2/2008 10:24 AM (GMT -6)   

Thanks for the recommendation, Quincy.  Soemthing to discuss with my doctor.

I've tried rectal meds in the past but my compliance isn't that great with them.  I've been thinking of trying them again because, since taking the sulfasalazine, it seems like remission is within reach.  Finally.  It'd be great if I could retain the rectal meds while awake and doing things.

Over a period of many years and through several doctors, I've always gotten the same response: Asacol is the first line treatment, and if it isn't working then I'm doing something wrong.  I'm the stubborn one for resisting steroids.

And, you know, it's not like my doctor prescribed the sulfasalzine for uc; he wrote the script because the joint pain is becoming a problem.  And he was rather reluctant about it.  I can't entirely blame him -- or my other doctors.  The medical literature is very much pro-Asacol formulations and very much against sulfasalazine.

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