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Worth a shot to try sulfasalazine before 6mp, etc?

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Ulcerative Colitis
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Posted 10/14/2014 4:39 PM (GMT 0)
Hi all,

I've tried all combos of my current meds-Asacol, Rowasa, Cortifoam- I'm not getting worse or better. I'm in a simmer...some days are fine, others...not so fine but I'm not like I was when dx. I know having constant inflammation isn't good...but I'm just not so sure I'm ready for an immunosuppressant.

I was wondering about trying sulfasalazine? Could it work better than Asacol? When dx my uc was in rectum and sigmoid colon. I haven't had another scope since though. I have taken sulfa antibiotics (bactrim) and am not allergic to that. ..and actually my uc was quite steady while on it.

Thoughts?

I pretty much want to refuse pred...those side effects look worse than 6mp. Plus I have diabetes in my family...I don't want to go there.

Thanks for any input.
Posted 10/14/2014 4:50 PM (GMT 0)
It might be worth a shot, but the side effects of sulfazine aren't pretty (headache, lowered platelets, sun sensitivity....) if you get them. You might add them to your meds and reduce the Asacol a bit.

My GI switched me from Pentasa to balsalazide when I developed tinnitus (from the Pentasa). That has worked well for me, in addition to the sulfazine that I take.

Have you tried dietary mods? You might consider experimenting with a GF diet for a couple of weeks to see if that makes a difference for you. It made a huge difference for me.
Posted 10/14/2014 4:57 PM (GMT 0)
You can try it. Although, sulfasalazine is known to have more side effects than straight-meslamine based drugs, which is why it isn't as often prescribed. Sulfasalazine breaks down to meslamine and sulfa (do you have a sulfa allergy?) within your gut. I am not sure that it will work any better; I'm skeptical. If you are not in remission and you are at the maximum dosages of meslamine (4,800 mgs of oral meslamine and 4,000 mgs of rectal meslamine) then most likely the anti-inflammatory medication in meslamine is no longer enough to get you into remission. Time to go up the medication ladder, to the harder stuff. 6mp takes multiple months to build up to therapeutic levels within your body. I would get on it now, rather than wait. As Uc has a nasty tendency to spread in extent and severity when it is left simmering...
Posted 10/14/2014 6:38 PM (GMT 0)
What about trying a different Asa? Lialda? Colozol? Sometimes a switch helps and sulafasalazine may be worth a try if u are not allergic. How bad off are u? There are risks with inflammation but there are risks with immunosuppressants too.
B
Posted 10/14/2014 6:50 PM (GMT 0)
I would try it before 6MP. While it can have more side effects than the mesalamines the possible side effects of 6mp are far scarier than those of sulfazine. I know our Dr. Brown is not a big believer in prednisone so I don't think you have to worry about him suggesting that. I had to talk him into a couple of short courses of pred for myself and he was curious how it went and I had to tell him, "Like you would have expected - got better while on it and returned to the same ole same ole once off".
Posted 10/14/2014 7:34 PM (GMT 0)
Kazbern...I have tried dietary mods..
Gluten free, dairy free, sugar free, all independent of each other with no other changes...no luck at all. You take sulfa? Do you have any side effects?

I'm afraid you might be right ipoop...but I hate to jump to something without trying my other options.

Hateuc...if I'm not allergic to sulfa antibiotics I assumed I wouldn't be allergic to sulfasalazine. ..but assuming is bad I know. I am not that bad really esp compared to some here. On a good day I go once or twice, feeling pretty normal. On a bad day I do the thing where I go like 3 or 4 times then have like dry heaves out down there. Not fun. And I usually don't feel great the rest of the day. I'd say on average I have a bad day then 3-5 good or at least decent days. But I do have varying amounts of blood. The cortifoam is controlling that somewhat.

yes Gary...I've never heard the p word come out of his mouth. Which is fine with me! I think I might read a little more and call his office this week.

Anyone else please chime in!
Posted 10/14/2014 7:40 PM (GMT 0)
I take sulfasalazine and have for many years now. I have low platelets and have migraines that need meds now. This med has done great things for my joint pain but I would not be using it if I didn't need it for that.
Posted 10/14/2014 10:20 PM (GMT 0)
That's why I'm afraid of taking Sulfazine. My first autoimmune disease was ITP (extremely low platelet counts) and it has been in remission for about 15 years. It is more serious than UC so I don't need to go down that road again. Many Sulfa drugs can lower platelet counts.
Posted 10/14/2014 10:21 PM (GMT 0)
Instead of pred...what about Uceris? Maybe this could tamp it enough that your old med routine would work again? Also what about trying a supp in the am in case it is the very bottom giving u trouble. Is your stool formed?
B
Posted 10/15/2014 2:03 AM (GMT 0)
Low platelets doesn't sound good...I'm just really feeling like I need to do something and immunosuppressants are more than I'd like to deal with right now.

Uceris might be an idea...would it work better than cortifoam? It's like my body got used to the foam...if I go off it for a few days then restart I feel great...then my body gets used to it again.

Hateuc...when I have stool it is mostly formed. When I'm doing the dry heaving thing it's watery and bloody. Sometimes if I eat more than usual I'll have a bout of mucus and blood only.
Posted 10/15/2014 2:11 AM (GMT 0)
"getting used to" cortifoam means essentially the disease is steroid resistant.
Posted 10/15/2014 11:16 AM (GMT 0)
I've taken sulfasalazine for a long time. I've had some problems with low platelets, but it seems to work overall and be worth the extra blood tests to keep an eye on the platelets.

It helps with joint pain, which is why I originally started it.

If you start with a low dose and build up, you can probably avoid a lot of the early side effects, like headache. They tend to go away after a couple of weeks.
Posted 10/15/2014 12:15 PM (GMT 0)
That's what I figured kazbern...just another reason not to bother with them. When I first used cortifoam it was magic. Then...not so much. If I stop using it for a few days it works great again for a bit. But obviously this is not a long term solution.
Posted 10/15/2014 8:55 PM (GMT 0)
I am currently up to five pills a day of Sulphasalazine. I changed over to see if it helped the severe joint pain and swelling. It has not. I started slow though with one pill and worked my way up.
Posted 10/16/2014 2:39 AM (GMT 0)
With sulphasalazine, I would imagine if it worked well for you, it would quickly. the only harm is waiting to start 6mp, in my opinion, is that if you need it you should start sooner than later because it can take quite some time to work.
Posted 10/16/2014 3:28 AM (GMT 0)
The joint pain several of you have mentioned. ..is it from UC? I know it's possible but just curious if it's from uc or something additional.
Posted 10/16/2014 11:44 AM (GMT 0)
It's mostly from the UC. That's the large joint pain (hips, knees). In my case, I have some other joint pain, and it's some kine of spondyloarthropathy, which is in my spine. That's different, and the sulfasalazine doesn't help it much.
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