diagnosed today - 2000MG/day Sulfasalazine appropriate or excessive???

Welcome to the forum! 4 pills?! I take 16 a day! Nine of which are Colazal (similar to sulfa as it is a maintainence med). I know it is scary though thinking about taking all those meds. By the way I'm small too (5'4, 110) and can handle them all!

I'm not sure about the iron and sulfasalazine. Hopefully someone can chime in w/ more info on that. You can always ask your pharmacist. They are a great resource when it comes to questions like that. Or call your GI's nurse. She/he should be able to help you.

You hang in there! Keep us posted on how you are feeling.

Hi Kasey and welcome!  I take 8 salofalk tablets a day  for maintenace and when I'm flaring I have to increase that to 12 - 14 tablets.  I am also small 5'2" 118lbs and I've never had a problem with all those pills, it seems like alot but here I think it's normal.  I am also anemic but I have a problem with taking iron pills so I try to eat things that are higher in iron and get what I can in a multivitamin.  Its not enough but if I take more I get so constipated that I have more problems.  about a week ago I got these samples of liquid iron so I've tried taking a spoonful a day and it seems tolerable, not sure if its helping yet, I'll have to wait until my next bloodwork.

It is probably not excessive.  The idea is to get the inflammation under control quickly.  Nearly 25  years ago this was the drug I was put on upon diagnosis, I am still on it. I definitely understand your reluctance to go on meds, I felt the same way.  This is a fairly benign drug, though some are allergic to it, after some headaches I adjusted and taking the pills is just routine and no big deal.  Though four times a day is a hassle I would, for now stay with it. At some time in the future you probably can switch to 2 or three times at a higher dose per time.  This is clearly not as good but I found I wasn't remembering to take the meds so I started taking them morning and evening, this has worked for me but get your inflammation undercontrol before tinkering with timing.

Thanks everyone. I feel better now after reading all your stories. I was a bit freaked out today after getting the diagnosis. I'm still really nervous to start the meds tomorrow. (I didn't start them today because I wanted to research.)

There's still so much to get used to. Just remembering to take them at the appropriate intervals will be hard enough. I actually put alarms in my phone because I have a horrible memory for this kind of stuff, and until I get into a strict routine, it will be hard for me to get used to taking these so often.

After looking up all the symptoms of UC, I can't believe I hadn't realized i had it before. Apparently this has been going on for years. Eight years ago, I had similar stomach problems and they tested me for the wrong thing. They x-rayed my stomach (found nothing wrong) when I clearly needed a colonoscopy. I'd been suffering with this ever since then and had no idea it might be treatable. It wasn't until recently that it became unbearable, causing me to seek a doctor again. (I actually thought I had a virus that wouldn't go away. A lingering 24-hour stomach bug!)

But everything I thought was related to my anemia (like my low-energy, constantly tired) is probably associated with UC instead. I had every symptom on the checklist!

So I'm looking forward to my life improving in that way, even if I have to take a few pills to do it.

My doctor told me he wanted to start me on these pills first because they had the cheapest co-pay and he liked to give his patients this option if it worked for them. Also, he said another brand would mean taking more pills than four per day. I have another appt in two weeks and I'm assuming we'll gage my progress then.

He did not prescribe folic acid, nor tell me to take a multi-vitamin or anything, so I'm wondering about that now. Perhaps I should look into foods high in folic acid?

Foods high in iron don't do the same thing for me that the iron supplement does. I always feel cloudy in my head until I take an iron pill and suddenly everything is clear. I'd hate to lose that. It makes me so productive. I find I have a hard time concentrating and being creative (I'm a writer by trade) when I'm low on iron, and even eating a whole truck of spinach doesn't have the same effect as the pill. It definitely doesn't constipate me! But maybe after I start taking the UC meds, it might?

Thanks everyone. I'm glad I found this site. I felt a bit lost today, with no one to ask.

I would definitely ask your Doc about the folic acid. You should also tell him about the Iron supplements you are taking, if you haven't already. I believe Iron can decrease the absorption of Azulfadine. Perhaps you may want to look this up. This is what I have read: the site is: http://www.peacehealth.org/kbase/cam/hn-1504003.htm

Folic acid

Sulfasalazine decreases the absorption of folic acid.1 Biochemical evidence of depletion of folic acid has been reported in people taking this drug,2 although available evidence remains mixed.3, 4

Folic acid is needed for the normal healthy replication of cells. Perhaps as a result, there is evidence that folic acid can reverse precancerous changes in humans.5 Ulcerative colitis, a disease commonly treated with sulfasalazine, is associated with an increased risk of colon cancer. Folate deficiency has also been linked to an increased risk for colon cancer.6 It is plausible that some of the increased risk for colon cancer in people with ulcerative colitis may be related to folate depletion caused by sulfasalazine.

Folic acid supplementation may help protect against colon cancer.7 One study found that people who have ulcerative colitis and who supplement with folic acid have a 55% lower risk of getting colon cancer, compared with ulcerative colitis patients who do not supplement with folic acid (although this dramatic association with protection did not quite reach statistical significance).8 Researchers at the University of Chicago Medical Center reported a 62% lower risk of colon cancer in folic acid supplementers.9 They suggested that the link between folic acid supplementation and protection from colon cancer may well be due to overcoming the folic acid deficiency induced by sulfasalazine.

Many doctors believe that it is important for all people taking sulfasalazine to supplement with folic acid. Folic acid in the amount of 800 mcg can be found in many multivitamins and B-complex vitamins. People wishing to supplement with more-typically 1,000 mcg per day-should consult their doctor.

Iron

Iron can bind with sulfasalazine, decreasing sulfasalazine absorption and possibly decreasing iron absorption.10 This interaction can be minimized by taking iron-containing products two hours before or after sulfasalazine.

Hope this helps.....

Kasey,
I frequently have problems with swallowing these huge pills and actually, I had to stop taking Colazal because they kept getting stuck in my throat where they would then dissolve and make me really sick and make my throat BURN like crazy. I went in for an endoscopy (like a colonoscopy but going in your mouth; a little more pleasant!) and they found my esophagus needed to be dilated, which really helped me be able to swallow everything much better. Basically they just stretched it out. I would mention this to your doctor next time you see him and see what he thinks!

Kasey - You may never get side effects. If they aren't there, why worry about getting them? I know it's hard not to worry, but keep in mind not everyone gets side effects from these meds. I did get a few side effects a few days after first starting Asacol (similar to sulphasalazine), but I was also on Flagyl (an antibiotic), which could have been the cause. They went away after a few weeks when my body adjusted to the meds.

As for your dosage, unfortunately, 4 pills is not a lot when it comes to UC. It actually seems like a very low dose. I take 12 pills of Asacol (4800 mg)/day, plus a probiotic, multivitamin, zinc and 2 calcium and Vit. D tablets. A nightly 5-ASA enema or suppository is also thrown into the mix, just to keep it interesting. =) It seemed like a ton of medication to me at first, but now that I'm used to it, it isn't so bad.

I would ask your doctor about taking folic acid. You can also ask him or her about the multivitamin. I had a GI at Mayo Clinic tell me there is no need to take a multivitamin, but I still take one anyway. I figure it can't hurt.

Welcome to the forum, by the way. This is a great place with so many helpful people and lots of great information. Hope you feel better soon.

I also wanted to add that Asacol tablets aren't that large. So, if you find it really hard to swallow the large pills, you could ask about switching to Asacol. I hate big pills, too.

I have been taking sulfasalazine for over thirty years and have never had any side effects (except for orangey urine). I am just about your height and weight and take 8 pills a day. After one GI recommended it, I found that the coated entabs work better for me. They are also long and skinny as opposed to round, making them easier to swallow. Since they are time released, I take 4 with breakfast and 4 with dinner. I've never felt any "quivering". Are you taking the pills with food?

M

In my experience, a therapeutic dose is 2 500mg tabs, four times a day... which is more than you're currently taking, so no, it's certainly not an excessive dose. A maintenance dose is 1 500mg tab, four times a day, which is the dose I stay on most of the time when I'm in remission and am symptom-free.

Sulfasalazine is a great ASA drug choice for those who can tolerate it and it's relatively safe... much safer than steroids or immunosuppresants. In the beginning, I felt like you do: I never took drugs and it was depressing to have to take so many pills all day long. (I take an iron-free multi-vitamin, fish oil caps, digestive enzymes, etc.) But with time, you'll get used to it and it will be no big deal. I take my pills with breakfast, lunch, mid-afternoon snack and dinner, so it's easy to remember. When I was younger, I had a mental block and couldn't swallow pills at all, but now I can take two large ones at once with no problem.

"The rumbling feeling that you are talking about reminds me of the feeling I get before I have the diarrhea."

I get a completely different kind of rumbling before diarrhea. That kind starts in my stomach and feels like my stomach dislodges from my other organs and twists and turns like its on a roller coaster in my body.

This is different. It's very...subtle. I feel it right above the spot where my butt meets the chair, which i assume is around my colon. It doesn't hurt, it just feels like there's a low, quiet, vibration. It seriously feels like the drugs are releasing in my body.

I'm almost positive it's related to the pills because I never felt this before yesterday.


Good idea on the can of fruit to eat at night. I'm going to pick some up today. I really didn't even know what to eat last night and I'm sure brownie was the wrong choice. I'm not a fruit person, but it's probably better than brownies.

"I've definitely not improved yet in the run-for-the-bathroom department. It's only 9am for me and I've already gone 5 times. Commuting was painfully difficult this morning because I'm trapped in a subway for 20 minutes without hope of a bathroom, and I struggle to hold everything until I can get near one."

Just wanted to share something that sometimes works for me when I'm driving home or something and am not near a bathroom and can't get to one right away.. I notice when I start panicking and thinking "oh no oh no, what am I going to do, I have to go NOW I'm not gonna make it, oh crap" it makes it a LOT worse. But if I take some slow deep breaths, close my eyes if I can, and try to relax as much as physically possible, it eases up some, at least enough for me to make it to the bathroom. I've only ONCE came close to having a full on accident, and it was because I was prepping for a colonscopy and even though I was laying on the couch right outside the bathroom, I still almost didn't make it on time.

But yeah, concentrated breathing really helps. Nothing is worse than having to go to the bathroom and not being able to.