Sulfasalazine?

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Devynnsmom

Devynnsmom

Joined
Jan 11, 2012
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Devynn started on Sulfasalazine on Nov 25. I journal all of her pain, symptoms etc. Since starting, she has only complained of stomache pain twice! :ywow:She has had no other symptoms, other than a 2 day headache. BUT the headache was when she had a horrible cold/flu, so we figure that was related to the cold/flu since I had the same bug and a headache that lasted 4days. In the month prior to starting Sulfasalazine, she had symptoms (stomach pain, mouth ulcers, joint pain, headaches) 13 days out of 30. Does anyone have any experience with this drug? Did you have good results? I am hoping and praying this is putting her into remission. It has been very nice having her relatively pain free and symptom free :) *knocking on wood* :ycool:
 
Woohoo on the drugs working.
DS used pentasa alone which is a similar drug but it didn't help.
So glad it is working5-ASA have a hard time keeping remission long term but whatever time you can get out of it is good .
 
Devynn was on Pentasa first and it worked great for about 2.5 years. The adjusted the dosage a few times as she grew. But in 2011 we had to put our cat down, and a week later found out my Mom had terminal cancer. That put Devynn in the hops for 4 days on morphine for pain. We lost my Mom 4 weeks to the day of diagnosis and Devynn has been flaring ever since. They tried her on Mezevant (for 8 mos) with no real change, so they have now switched her to the Sulfasalazine. I am just praying this is actually working, and not just a conicidence. I really don't think it is, because like I said I journal EVERYTHING! I am a bit anal about it, (no pun intended) so I know I am seeing a change.. but am so afraid it won't last.
 
My son has been on sulfasalazine since June. He was put on it to control his Crohn's related arthritis. It has worked great for his arthritis. We find that if he takes it on an empty stomach he gets wicked stomach pain. I also think that it gives him headaches on occasion but we're willing to put up with this if it will keep the arthritis at bay.
 
Thank you Angie!!
Twiggy, I think our dr said it was originally a drug for arthritis, but they found that IBD patients were doing so well on it, that they starting using it as an IBD drug. We were told always take it on a full stomache, and so far so good. They did warn us of headaches, and the pharmacy *forgot* to tell me to start her off on it slowly. (1 pill a day, increasing every 4-7 days until we are at 2 in the morning and 2 at night. She is at 3 right now just because we were not 100% positive that the headaches were related to the cold/flu.
 
We also do the 2 in the morning and 2 at night. At first I tried to give him the pm dose at about 7pm but pushed it up to 5pm so that he can take it with dinner. It seems like it is ok on his stomach as long as he takes it with a full meal. I don't know if his headaches are related but he seems to get more of them now than he ever did before all of this started. They seem to go away with tylenol so they aren't too much of a problem. They are a HUGE pill has she found swallowing them ok?
 
5-ASA meds like this do not have a good track record for putting people into remission. A little better for keeping them in remission but not for inducing remission.

But that is at the population level. At the individual level there are always going to be some people who respond and get benefit from the med.

Placebo effect might account for part of the change I suppose since she was on it before and did well. Her unconscious brain is working to help reduce her symptoms because it associates this med with being in remission maybe? This might be a more significant factor than usual since she clearly had a really big physical reaction to her grandmother's illness and death.

You don't say how old Devyn is which might be a factor. I had a somewhat similar experience with my son who was about 7 when his grandfather died. He refused to speak about his grandfather or let anyone talk about his death in his presence for months. And within about a week of my dad's death (this was before his Crohn's diagnosis) he developed the worst asthma flare of his entire life and I was doing treatments at home around the clock for almost 30 days to keep him out of the hospital. It's been 10 years and my son will still hardly speak about his grandfather.

So IDK why the apparent change in symptoms. I think it's probably too soon to draw any conclusions but I would not look this gift horse in the mouth. Consider it a New Year's present maybe?:dance:
 
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Twiggy, they are actually about 2/3 the size of the Mezavant which was the first pill she ever swallowed. BUT she has more trouble swallowing them than she did the mezavant! She said they kind of stick to her tongue. The Mezavant was candy coated, so even though it was HUGE, they went down easy. She usually takes her pm ones about an hour before bed. She has something to eat (toast, yogurt, something not too big) and so far no problems.
 
Patricia, Devynn is 11. Yes, her grandmothers death affected her terribly. I am a single mother and my Mom was kind of like a second mother to her. They were extremely close and Devynn has had a very hard time with losing her. She talks about her a lot, we all do. It used to be hard for her to talk about her, lots of tears. But she can talk about her now and smile. She misses her, especially with Christmas coming, but she can remember her and talk about her without crying most of the time.
I will def not look a gift horse in the mouth, and am crossing fingers (eyes, toes lol) that this is a change for the good :) BEST New Years gift I could ever even imagine.
 
It is so hard for our children to go through these challenges. We lost my Mother in law 10 months ago 4 months after she was diagnosed with a brain tumor. it takes time to heal but it does get a little easier every day. My daughter flared also after her grandmother passed and it took some time but things did settle. I hope the Sulfazaline does work for her. Like the others said for crohns it does not work as well as for UC. I don't remember does your daughter have crohns or UC? Wishing you guys Happy Holidays and hopefully this improvement will continue.
 
Gracie was given Sulfasalazine after her scope showed inflammation and it took a couple of weeks to show improvement but then she was SOOOO much better on it. Then the jerky GI took her off of it since we don't have a definitive diagnosis. It has been downhill from there.

I hope it continues to work for you!!
 
Devynnsmon ..When my daughter took sulfasalazine she was told to take the afternoon one with her dinner so it could reach her large bowel otherwise we were told it sits in the stomach...Good luck i hope it works
 
Kim, thank you. Devynn was originally *unofficially* diagnosed with Crohn's, but after her scope in Jan 2012 they officially diagnosed her with ulcerative colitis. Stress is so bad, I just really hope this gives her the break she needs :)
LAuren, I'm sorry your GI took Gracie off it if she was doing well! Thats awful! I hope she is feeling better too.
Upsetmom, Thank you. I have never heard this, I will have to talk to the dr. In the meantime I will start giving it to her after dinner.
 
Yes definitely check with your DR.

My daughter was seeing a surgeon at the time who eventually told us he was good with the knife but didn't know how to treat her because of her age...:voodoo:...so definitely double check
 
I've got nothing major to offer but a big hug. Hope she continues to improve.

:ghug:

J.
 
No experience with 5ASA's here but I am wishing Devynn all the luck in the world that she has the same success now as she did previously, bless her. :heart:

:goodluck:

Dusty. xxx
 
I have been on sulfasalazine since july thus year.I am only taking one dose due to the nausea it gives me over 500mg. I was prescribed this by my Rheumy for AS along with celebrex and I must admit it has helped dramatically with the AS. I have been off meds for almost a year for the Crohns but had a bug flare two weeks ago landing me in the hospital. Up until then, everything was ok. Best of luck
 
So glad to hear she's doing well on the new meds!!! Hoping it continues for a long, long time!!! :ghug:
 
Hope it continues to work great and it isn't just a coincidence! It would be great if she could enjoy feeling good!
 
Sulfasalazine is an old drug that's been around a long time. It worked for me for a decade or more, but I did have trouble with my kidneys on it as a young kid and was hospitalized. It also gave me TERRIBLE excema on my extremities. I'm glad it's working, keep an eye on it!
 
Rowan took Sulfasalazine for about 9 days and got almost every side effect that was bad and none of the good. It was that med that determined her to be 5asa intolerant. She started bleeding terribly from it, the rare side effect of rectal bleeding. I know it is very hard on the kidneys so watch for less urine output and dark colored urine. She had no appetite, dizziness, vomiting, rash, joint pain, it was bad for her. :( I hope it works for Devyn and for a long time. No real advice just a lot of support coming your way. How is she feeling now from it?
 
OMG thats scary!
Devynn is doing very well *knock on wood* she has not complained of stomache pains, joint pains, or had mouth ulcers in weeks. We had take out pizza last night (not something we usually do) and she had THE worst gas she's had in weeks. It was so incredibly loud and of course she had a friend spending the night.
How is Rowan doing?
 
We are back to belly distention and constipation. Been giving her Popsicles and grape juice all day. She's got a lot of trapped wind, and is burping a lot. Still having BMs and she never ever has formed stools but is now again popping brown playdoh. Just weird to see a constipated jpoucher. I am scared bc the just isn't much to compare her too her case is just so odd. She still is stumping her doctors and this makes me nervous with all the mis-doagnosises going on. She doesn't present normally and I am not taken seriously. She usually has more than one thing going on and they assume it is the one thing and ignore all the symptoms of the other. I thought bowel obstruction they found c.diff, deemed her c.diff diagnosis a false positive, diagnosed her with pouchitis. I think she is having reoccurring partial blockages am treating it like adults do on the jpouch group site. Thanks for listening.
 
OMG thats awful! Poor little girl! The dr's never really listened to me about Devynn either. I am SO happy we have been switched from her GI to the IBD clinic. Her dr would just say "Uh huh.. uh huh.. " the whole time I was talking. Before that, the family dr always passed everything off as being viral, or normal childhood aches and pains. I hope you get answers, thats so incredibly frustrating and horrible to watch your baby suffer :(
 

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