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Sulfasalazine Reviews

Sulfasalazine
Sulfasalazine, reminds you of science class don’t it:)

Some background info on Sulfasalazine:

Sulfasalazine (brand name Azulfidine in the U.S., Salazopyrin and Sulazine in Europe and Hong Kong) was developed in the 1950’s specifically to treat rheumatoid arthritis. It was believed at the time that bacterial infections were the cause of rheumatoid arthritis. Sulfasalazine is a sulfa drug, a derivative of mesalazine, and is formed by combining sulfapyridine and salicylate with an azo bond…Sulfasalazine is used in the treatment of inflammatory bowel disease, including ulcerative colitis and Crohn’s disease. It is also indicated for use in rheumatoid arthritis and used in other types of inflammatory arthritis (e.g. psoriatic arthritis) where it has a beneficial effect. It is often well tolerated compared to other DMARDs.

It is on the World Health Organization’s List of Essential Medicines, a list of the most important medication needed in a basic health system. (from http://en.wikipedia.org/wiki/Sulfasalazine )

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Sulfasalazine
Average rating:  
 6 reviews
 by Philippe D
Kept me 25 years in remission

I've been diagnosed with UC at 11. Salazopyrin kept me in remission for 25 years, with only minor side effects. Eventually I became allergic to it, as it gave me severe eosinophilia, after which I had to switch to less well-performing drugs. Still, 5 stars for 25 years without gut issues.

 by Elaine J
31 Years on Sulphasalazine

I was diaganosed with lower left side UC (15 centimeters) via a barium enema in 1984, and prescribed Salazopyrin (now called Sulphasalazine) by an NHS consultant at my local hospital. For the most part since then, it has helped me avoid flare-ups without any change in my diet, although it has been normal for me to be anxious about travelling, go to the loo more often than anyone else, and have the occasional ‘mad dash’. In the last few years I've had a few flare-ups (thankfully short and not requiring hospitalisation, and reading other people's accounts mine were pretty mild in comparison to some), and it was only reading Adam's book that made me realise that some of them were likely triggered by other medications, notably antibiotics ...

One thing I have found, and which I believe is due to the drug, is that my hair is thin, and I’ve had a mild occasional rash.

Probably the worst thing for me being on sulphasalazine was that in ’91 our first child was diagnosed in utero as having spina bifida & hydrocephalus. Stunned, we opted for a termination because we had no idea how (living on a second floor flat) we would cope with a disabled child, we were in no position to be able to afford 24/7 care, and everyone around us urged us to do so. An expert at Kings College Hospital did say there may have been ‘malabsorption’ of essential nutrients but could offer no definitive cause. I later found out through my own research that sulphasalazine (and later still, the UC itself) may have been involved… Right about then was the time that the importance of folic acid in prevention of spina bifida was hitting the media, but too late for us. (we now have a healthy adult son following a visit to a private consultant who prescribed a six month course of various vitamins and minerals, and later something which I remember was similar to ‘pregna-care forte’)

When I had the last flare-up a couple of years ago my GP prescribed Clipper steroids, didn’t help, so I saw the consultant who prescribed Pentasa suppositories (in addition to the sulphasalazine) but whilst this did help it also gave me terrible itching and a skin rash far worse (but similar to) the one I get with the sulphasalazine.

I’ve given the sulphasalazine four stars because it did seem to work for me for a good many years – I only had mild symptoms for most of that time. Now I’m older and have gone through the menopause, it doesn’t seem to be working so well and I am finally starting to pay more attention to my diet. Whether I will ever be able to drop the drugs I don’t know, but care with my diet can only help and the rest I will take it as it comes… I hope this is useful information for others, and thank you Adam for this brilliant site!

 by Rhonda Beech
Salofalk

Diagnoses of moderate to severe UC in July 2014, I was started on a 800mg dose of Salofalk which after after 5 days landed me in emerg. I had all the classic side effects of either an adverse drug reaction or allergy..., fever, headache, neck pain, rash, palpitations, abdominal cramps, etc. I was taken off the drug then it was suggested I try starting with a small dose and work my way up to build up my tolerance so I was sent to an allergist. I was up to 600mg once per day and throughout that process, I continued to ask if this drug contained sulfa? I had a reaction to a sulfa based antibiotic years prior and have avoided sulfa drugs. Information I read stated if one has an allergy to sulfa, you should not take salofalk. My blood was tested and clinical evidence supported I am very allergic to sulfa and it is strongly recommended that I avoid it. So while on Salofalk, there was no decrease in urgency and frequency of bathroom trips, I had frequent headaches, muscle cramps, joint pain, nausea while building up my "tolerance" and basically felt unwell. So I informed my Dr. I was discontinuing the drug. I am looking for the next miracle drug, he just did a colonoscopy and am off everything until my appointment with him in July. He mentioned possibly Humira but given my allergy I am discouraged! Wondering if anyone else is in the same boat!

 by Roger Statz
sulfasalazine - Greenstone mfg.

NOTE - the Manufacturer of sulfasalazine you use CAN MAKE A DIFFERENCE! In our case, Greenstone manufacturer WORKS, but Watson DOES NOT. In our case, we rate Greenstone mfg as a FIVE, but Watson mfg as a ONE.



Our daughter began having clear UC symptoms at age 5, diagnosed 6 months later by scope. Symptoms went away for about 6 months, came back with a vengeance, and we were able to have her stable for about 6 months on sulfasalazine 500mg BID (NOTE - by manufacturer Greenstone - the default used by our local pharmacy.) It was VERY IMPORTANT be well hydrated during the first couple weeks since any even slight dehydration would bring on nasty headaches. It took 2 weeks for it to take effect & control the flare fully.



Six months later our pharmacy closed, we switched pharmacies, and the new pharmacy refilled our sulfasalazine prescription with manufacturer Watson. In the month to come, our daughter's UC (which had been well controlled for 6 months) degraded into flaring again. When we finally put the timeline together, we got her switched back to the Greenstone. Two weeks later, the flaring was just getting controlled when other (perhaps associated) issues required hospitalization. She was on IV prednisone in the hospital, oral when left the hospital, and we tried for 8 months to get her off the pred (we refused to go to the harsher meds like 6MP, etc.) We finally used Delzicol (mesalamine) to bridge getting her off pred, but with very bad side-effects. We still had a month's worth of the Greenstone sulfasalazine on hand, so tried that again, and she's stabilized again in the last 4-5 months (we also discovered other factors...overgrowth of potential pathogenic gut bacteria, some nutritional deficiencies, etc. that were addressed.) We pay out-of-pocket for this, and it only costs about $16/month (vs 15X more/month for Delzicol/mesalamine...which didn't work in the end for her.)



Reiterating - had our original pharmacy initially given us the Watson manufacturer of sulfasalazine, it would NOT have worked, and we'd have written sulfasalazine off as ineffective for our daughter's UC. It "should not" make a difference because the medication & time-release factors are supposed to be the same between these manufacturers ...but from our experience THEY DIFFER. Do consider this in your own situation - this prescription is cheap enough to try both, even out of pocket, and both mfg should be readily available to pharmacists.

 by jackie allison
sulfasalazine

I have had uc for 21 years . I have used sulfasalazine for 20 years and have had no flare ups . Its a miracle drug !

 by Adam Scheuer
did not work for me

This was the fourth medication I was prescribed after my ulcerative colitis diagnosis in October of 2008, and it did not help my symptoms. Initially I was prescribed a dosage that within less than 24 hours led to severe headaches (nothing like any headaches I'd had before in my life). Upon calling the docs office the next day, I was told by my GI to cut the dosage in half, and within a half day the headaches dissipated and eventually went away completely within a few more hours. After several weeks of no reduction in my symptoms, it was decided that the medication was not working as intended towards clearing/reducing my symptoms which were at the time severe so the med was eventually stopped altogether.



12 thoughts on “Sulfasalazine Reviews”

  1. My First real serious UC flare I was prescribed sulffasalazine by A&E doctor. Made my urine bright orange, I started to look slightly orange too. The pain in left side got worse and I was extremeley light sensitive and blurry eyes. I was hospitalized at the time as needed IV steroids . Took sulf for 4 days only and when my consultant finally got round to visiting me on the ward he changed them immediately to Octasa MR 800 mg dont think they are doing anything the steroids hadnt started. I’m currently tapering of prednislone 3 months left to go!!

  2. I was diagnosed with UC about a month ago. I started Rowasa (contains sulfasalazine) the next night. Within 12 hours, I started with flu like symptoms, gooey eyes, high fever, and finally, a horrible rash. I continued to take it for two more nights because I thought I had a virus! After three days, I took myself off of the Rowasa despite my dr not thinking the two were connected. I immediately began to get better but it took me several weeks to get over the reaction. In retrospect, I should have been in the ER. My reaction was serious…involving my mouth and windpipe!

    I took Canasa next and suffered another (not as scary) reaction. It seems as though I’m not able to take any of the “baby” drugs. In the words of my GI…”you are screwed”. I’m currently taking Uceris. After a week, it has cut my frequency but that’s about it. Now he wants me to consider Imuran for maintenance. And no discussion of diet from him, but I bought and read BTVC on my own, and I’ve started SCD.

    I hope my review helps with someone starting sulfasalazine. If you start it and experience what you think is a virus or the flu…stop and go to the ER! This could be dangerous!

    Wishing all of us a cure!

    Lisa B

  3. I was prescribed sulfasalazine for my UC I did not have any side affects including it did not help me with my UC. My urine did change color to bright yellow I guess. I just stopped taking them because they didn’t seem to help. How long did any one take them before they noticed symptom relief?

    1. When it worked for our daughter, it took 2 weeks, about to the day, for sulfasalazine to kick in. BTW – I have the posting above – about the brand of sulfasalazine. Well, it’s no longer controlling either. TBD next steps – got the flare knocked down with pred, and tapering down to see what happens…

  4. I was initially diagnosed as having Krohn’s disease 22 years ago I was taking Asacol and I was still bleeding occasionally. I went through 2 GI doctors with no real success. About 5 years from my first diagnosis I saw a third GI doctor who knew what he was doing. He diagnosed my disease correctly as UC through genetic testing and colonoscopy. He prescribed sulfasalazine 4 (5oo mg each) in the morning and 4 before dinner. He also prescribed 2 PPIs, one before breakfast and 1 before dinner. In addition, he prescribed folic acid (1mg/day). He also prescribed Canasa suppositories. After a few months my bleeding totally stopped except right after colonoscopy, which is expected, but it went away quickly. However, all this time I have been having joint pains. My doctor attributed that to UC. We moved from that town when I retired and about 5 years ago I started seeing a new doctor in the new town. He approved the medications the previous doctor recommended and, in addition, he wanted me to eat Greek yogurt to introduce good bacteria into my gut. I have had no UC flares the last 5 years, however, my joint pains still persist. I am trying to cut down on my sulfasalazine to see if that will reduce my joint pains. I am doing this while taking Lglutamine, which I buy from the market. I hope this will help other with UC. I would also like to know from the viewers if they can suggest some natural remedies so I can slowly reduce and eliminate my PPIs and possibly sulfasalazine.

  5. Be careful with L-glutamate, I was given Large amounts by a homeopathic doc? and overnight literally, I lost the ability to fall asleep. That was 11 years ago.
    I since found out about something called a Glutamate storm which changes the exchange of chemicals in your brain. You need Gaba to relax and fall asleep, the glutamate inhibits the action of this gaba.
    I have had to use Ambien to sleep for years, and now just started the GARD diet to reduce eating high glutamate foods, which coincidentally helps my U C . No dairy, grains, soy, corn.
    I don’t remember how much L-glutamate I was taking, but I know I had bought a large tub of it, and after a month or two, I quit sleeping

  6. Hello
    I have a question for the group.
    I would like to know if anyone has had success with CBD Oil? I don’t fully understand it but I understand this part of the marijuana which is not part of the THC which gives you the high can do medical wonders including maybe IBD?
    Thxs
    Paul

  7. When I was first diagnosed with RA, my doctor immediately put me on prednisone, sulfasalazine, and MTX. The combination helped the pain a little bit but I didn t get substantial results until I got on Humira.

  8. Hi guys,

    My name is Megan and I’m 23. I was diagnosed with ulcerative colitis when I was 14 years old. I am currently in a flare up of my ulcerative colitis and have bee spending a lot of time researching new diets and ways to heal my body because I haven’t been responding to any of my treatments perscribed.

    I came across learning about how the body has a gut microbiome. This is where good bacteria and bad bacteria live. Normal people have a balance, or most likely, more good bacteria that can help break down any food in their body. Unfortunately for us with ulcerative colitis, we lack that good bacteria!

    I started researching ways to improve my gut microbiome and that was when I came across a diet where this guy completely healed himself of his severe ulcerative colitis with no symptoms!!!

    https://m.youtube.com/watch?v=7Lo2I1gUYfg

    I use to be on sulfasalazine until I got a horrible, near death reaction where my airways close up and I could barely breath. Then I moved into mezevant and have no longer been responding. Now I’m on prednisone to move me to remission but it’s not working. I went to the ER a couple days ago because I was so sick and they put me on rectal treatments of mesalazine. So now I’m taking oral mesalazine, rectal mesalazine, and 35mg of prednisone a day. My doctors told me that my options are running out and I may need to result to stomach injections (remicade or humira) and they have horrible long term side effects and cost $40,000 a year!!!

    So right now, I’m trying to focus on restoring my microbiome. I sent a link above for you guys to check out. He has more videos on different things!! Watch him.

    The best foods for ulcerative colitis are:
    – avacado
    – bananas
    – potatoes (they have RF starch that feeds good bacteria in your gut)
    – kefir milk (with no added sugar)
    – blueberries (frozen/unfrozen) These have HUGE anti-inflammatory principles in them!
    – Fermented foods are really good because they feed good bacteria
    – Anything pro-biotic

    I hope i helped.

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