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Sulfasalazine Poll

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Ulcerative Colitis
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Posted 4/9/2008 7:22 PM (GMT 0)
Just curious as to how many people are on Sulfasalazine, and if it is a maintenance dose, what dose are you taking.  It seems to be the only thing that works for me.  It amazes me to see how many people have tried lots of other drugs without any luck but they haven't tried this.
Posted 4/9/2008 7:34 PM (GMT 0)
I'm not on Sulfasalazine but that was one of the first meds I tried. I had a severe allergic reaction to it so of course I had to stop taking it. However, many people's GI's don't typically prescribe Sulfasalazine because of the higher chances of allergic reactions. Glad it's working for you though!
Posted 4/9/2008 8:02 PM (GMT 0)
Hello
Was on it for 2 1/2 years ...cant beat the cost
worked great ..and then i flare up ..Doc said it fail ''
Posted 4/9/2008 8:06 PM (GMT 0)
I tried this one and quickly found out I was allergic!
Posted 4/9/2008 8:08 PM (GMT 0)
I'm very relieved that it has worked for me. This was the drug that I was put on when first dx'd with UC. Then I went off of it for several years because I was doing so well. (against Doc's advice). My new GI wanted to put me on Asacol when I started my last big flare. I asked for Sulfasalazine and told her that's what I was on years ago. She told me that they have newer drugs that work better and still wanted me to go on the Asacol. So, I went on the Asacol for almost 2 years with no improvements, and finding them undisolved.........I again asked about the Sulfasalazine and she said "Sure, if you want to try it" I went on it and in 2 months was back in remission, which was a relief because she was ready to start me on 6mp which I was not comfortable with.......You would think that the Doc's would try this medication before the more powerful drugs which have higher risks........If a patient ends up being allergic, no harm, try something else. But I think they should at least give it a try. I think that some patient's don't know about the drug at all. It has truly been my Godsend..........
Posted 4/9/2008 8:48 PM (GMT 0)
It worked fairly well for me when I was first diagnosed. I think I started to get bad headaches on it, but it was so long ago, I really wish I had kept a journal and recommend everyone with UC to make one. I am glad it is helping you.
Posted 4/9/2008 10:10 PM (GMT 0)
was the first drug for me also but was allergic to it.
Posted 4/9/2008 10:23 PM (GMT 0)
I was allergic to it too!
Posted 4/9/2008 11:37 PM (GMT 0)
It made me sick as a dog... It was one of the first meds I was put on. Another allergic reaction i suppose. Thought I was just weird.
Posted 4/10/2008 2:24 AM (GMT 0)
What kind of allergic reactions? I am on pentasa and I think it worsens some of the D.
Posted 4/10/2008 10:14 AM (GMT 0)
My son has been on it since 2002 when he was first dx at the age of 10. His dose has been tinkered with as he grows, flares, gets better, etc. Right now he is on a maint. dose of 2 (500mg) 3 times per day. At the max, he has been on 12 pills per day.

My daughter had a slight allergic reaction (fine rash on her arms and legs) when she was put on it in August.
Posted 4/10/2008 11:04 AM (GMT 0)
Mitzo - my allergic reaction to sulfa started at painful raised welts along my legs. Now when I'm exposed to it, I get hives sometimes still but intense painful stomach/intestinal cramps along with massive D - oh my lordy are they ever painful!
Posted 4/10/2008 2:45 PM (GMT 0)
I tried it and it worked great for my UC and arthritis. However, it did a number on my head. I had terrible anxiety and depression while on it. As soon as I discontinued its use, I felt much better. Strange.
Posted 4/10/2008 3:25 PM (GMT 0)
I had red patches all over my arms and my lips were super puffy
Posted 4/10/2008 3:33 PM (GMT 0)
I have been on Sulfasalazine since I was first diagnosed over 30 years ago. I take 4 tablets twice a day. I have noticed that taking the entabs (time released coated tablets) work better for me that the regular ones. Fortunately, I have had no allergic reactions. I used to have a maintenance dose of 2 tablets twice a day, but now have noticed that when I go below a daily total of 8 I begin to flare.

M
Posted 4/11/2008 3:32 AM (GMT 0)
I am also on a maintenance dose of sulfasalazine (4 per day). I've had UC since 1980 - fortunately with very long remissions and fairly mild flares since the first couple years I was diagnosed.

I started reading here recently after having had three mild flares since the fall due to work-related stress. Usually bumping up my dosage is enough to control a flare.

I don't find that it helps my arthritis all that much, but maybe a higher dosage would. I was interested to read that others have experienced depression and headaches. Curiously, I did develop a sulfites sensitivity several years ago. I have always wondered whether that might be related to this med . . .

Boy, do I have a lot of questions to ask my GE the next time I see him for a colonoscopy!
Posted 4/11/2008 7:38 AM (GMT 0)
Im on the 3000mg diet of sulfasalazine a day (6pills). It works well but gives me migraines once every few months.
Posted 4/11/2008 10:01 AM (GMT 0)
Moo,

Sulfasalazine and sulfites are two different substances. While it is possible for there to be a connection (they're both sulfur containing substances), it is more likely something else caused your sulfite sensitivity. Vitamin B12, magnesium, zinc, iron, and molybdenum are nutrients that are needed to offset the sulfite sensitivity (these nutrients help the enzyme that processes sulfites to work better). Taking these nutrients should increase the amount of sulfite you can tolerate before experiencing a reaction - IF the problem is due to a deficiency in the sulfite processing enzyme activity. Vitamin B12 also directly binds to sulfites, rendering them harmless to the body, so if you do get exposed to sulfites accidentally, you can take oral Vitamin B12 to reduce the symptoms of the sulfite reaction. IF you are allergic to sulfites, the nutrients should still help, but won't help as much.

I happen to also be allergic to sulfasalazine and have sulfite sensitivity, but I tend to not do well with anything that contains sulfur (this is not the norm for people with sulfite sensitivity - usually, sulfa-drug allergy and sulfite sensitivity don't occur together).


Take care,

Posted 4/11/2008 2:10 PM (GMT 0)
I have been on it for over twenty years. very cheap and it works.  Tried it when first diagnosed  and I had head aches, went off it tried again no problems. Currently 3 500 mg. 2 x a day, I self adjust as needed up or down.

Posted 4/11/2008 2:21 PM (GMT 0)
I'm also on sulfasalazine, by request. My first GI had me on asacol, which did not help and I believe made my D worse. I'm currently on a maintenance dose of 1 500mg tab, four times a day. When I'm flaring, which isn't very often, I take 2 tabs four times a day.

Posted 4/13/2008 5:21 AM (GMT 0)

Razzle said...
Moo,

Sulfasalazine and sulfites are two different substances. While it is possible for there to be a connection (they're both sulfur containing substances), it is more likely something else caused your sulfite sensitivity. Vitamin B12, magnesium, zinc, iron, and molybdenum are nutrients that are needed to offset the sulfite sensitivity (these nutrients help the enzyme that processes sulfites to work better). Taking these nutrients should increase the amount of sulfite you can tolerate before experiencing a reaction - IF the problem is due to a deficiency in the sulfite processing enzyme activity. Vitamin B12 also directly binds to sulfites, rendering them harmless to the body, so if you do get exposed to sulfites accidentally, you can take oral Vitamin B12 to reduce the symptoms of the sulfite reaction. IF you are allergic to sulfites, the nutrients should still help, but won't help as much.

I happen to also be allergic to sulfasalazine and have sulfite sensitivity, but I tend to not do well with anything that contains sulfur (this is not the norm for people with sulfite sensitivity - usually, sulfa-drug allergy and sulfite sensitivity don't occur together).


Take care,


I'm aware they're not the same substance. But I have often wondered about the sulfur connection.

Coincidentally, I just bought some sublingual B12/folic acid to try to see if it might help boost my energy level. I need to also find a good multi-vitamin with minerals that I can tolerate.
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