Lialda worked great . . . Until it didn't?

Hi all,

I had been doing super well on my Lialda--got to 1-2 normal poops per day, back to my regular running schedule, a bit of excess fatigue and some joint pain, but overall I felt so good that I became acutely aware of how not good I'd been feeling previously.

It was delightful.

And then my doc called in a RX for Feosol, to help boost low ferritin levels and all hell broke loose. 2 days after starting the Feosol I thought I had come down with a stomach bug (cramping, so much D, extreme fatigue, body aches) but 2 days after that, when symptoms persisted, I realized it was potentially the iron supplement, but thought perhaps an adjustment period was required.

3 days later (1 week from starting the Feosol) I decided to stop taking it and see if symptoms improved. They did . . . A bit. The cataclysmic D stopped pretty quickly, though I was still having some cramping and much more frequent BMs, but it seemed like improvement. I called my doc to let her know the issues I was having, and that they seemed to be resolving since stopping the iron. She agreed that I shouldn't take it and said we could consider transfusion if my ferritin was still low at my appointment next month.

The call to the doctor was 2 weeks ago and I am now fully-engaged in flare symptoms, down to my morning blood and mucus explosions, plus some sleep disruption--which I never even had to begin with.

I'm calling the doc back tomorrow, but was curious if this is generally a sign of Lialda trial failure, or if, when something throws you back into a tailspin of symptoms, something additional (pred?) was sometimes needed to get the Lialda back on track.

I had such great symptom relief with just the Lialda that I'm worried about the fact that it doesn't seem to be righting the situation this time around.

Oh man; that's what I'm worried about. Cause the Lialda was great, but not quite back to normal. I thought perhaps it was a honeymoon reaction and the end of the honeymoon was either hastened by--or coincided with--the Feosol.

I have enteropathic arthritis, so my rheumatologist was already talking about possibly skipping to addition of 6MP sooner, rather than later, since the Lialda won't really do anything for the joint pain. I was willing to deal with the joint pain (it's really mild) since the Lialda seemed like it was going to be the ticket.

So, possibly a good thing in disguise of it hastens the addition of something that will help with more symptoms.

Thanks for sharing!

But if just Lialda is what got my flare under some control to begin with, why wouldn't it work to get a flare under control again?

And I guess my concern was stemming from the fact that it was great, but not quite controlling my symptoms. My appointment in early October is to evaluate my response to the Lialda.

I have a sulfa allergy, and although the rheumy said it's possible for people with a sulfa allergy to take sulfasalazine, she felt that the rewards were minimal relative to the better results she thought she could get with 6MP. I don't have RA; it's enteropathic arthritis, secondary to the UC.

No rectal meds......! Why?
q

Then you cant blame the lialda at this point.

Consider sulfasalazine? I urge rectals at least to try.
q

I use Lialda only, and sometimes I simmer a bit, but am mostly managed. I am never completely sure about symptoms without blood because I had part of my right colon removed.

But over time Lialda gets me back into managed state, and sometimes pred helps. Lialda is not great for the area near the rectum, and sometimes I have used rectal mesalamine.

If the iron somehow worsened the extent or severity of your IU, or further hurt you gut microbes, it may be possible it is no longer enough. But it is reasonable to give it some time if you can stand the symptoms.

good luck

I totally get all that. But my concern remains, if I can be controlled, orally, with the addition of the 6MP AND ALSO quell the joint pain--which Rowasa won't do--then I'd rather try the 6MP before adding an enema that won't manage all my symptoms.

I.e. I didn't want to try the 6MP when I thought the Lialda was going to take care of the GI symptoms, because I can live with it. But if the Lialda isn't going to take care of the symptoms, I might as well try the 6MP.

This forum is the only place that insists UC be treated with rectal meds. Neither of my doctors feel this way. 😜

6mp is a systemic med....if you are willing to go that route, definitely do.

Subjective about rectal meds, and just because your docs don't feel that way....they do not have your diseased and flaring arse. They aren't systemic. Keep that in mind as to WHY WE SUGGEST IT!

When I arrived here in 2003, it was a foreign thought. Others at least considered and requested and havent had to change. Others have had to go up the med scale, others have done that and ultimately decided on surgery....but at least tried them.

You have 2 issues to deal with, and try the 6MP or other suppressant or biologic meds.
If that isn't enough for your arse, but enough for your joint pain, still consider rectals.

q