Remission , where are you ???

I have not had a steroid free remission since the diagnosis in November. Been on steroids since January and other than 2 weeks after giving birth in early April I have not been off of them. Despite this , and staying on s higher dose of 30 prednisone I'm getting worse. I just had a scope Thursday so wondering if it made me worse ? Should I go up on the prednisone ? The blood is a lot and the cramps worse. My GI is out of town. I usually try to stay positive but I'm so tired of this. I keep doing whatever I'm told to including taking toxic prednisone and just get worse. Waiting on insurance approval for humira etc gonna be atlesdt another week before I start it then who knows how long it'll take before it works if it even works. Meanwhile my bones are weakening and my face rounder.

During all of this I care for my newborn all night bc my husband works. Blowing my money on nannies bc I also have a 2 and 4 year old. I have to start thinking about adding work into this mix as my maternity leave ends at the last week of June. I'm feeling like this is all impossible.

Sorry for the whiny post. I'm hitting a low point.

I am sorry you're struggling. What are you taking for your UC again? Just mesalamine? I think there are a few things you should try, firstly, have you had stool tests? Have you tried other mesalamines? Are you using rectal meds?

The other thing I wonder, did you start on a higher dose of pred and drop down to 30mg or was 30mg the max dose you've taken? Regardless of that, 30mg is a decent dose and I believe my first flare up would have responded pretty quickly to 30mg - later flares I definitely needed a bit more to respond. At the same time, if it responds to 60mg, what are you going to take to maintain your condition?

I've noticed that once I was on prednisone and I tried to get response from a higher dose, often it wasn't as effective for me, as it was when I began taking it. It's almost like it's some sort of loss of response/effectiveness over time. Did you ever feel like you got to 100% with prednisone? I personally feel like November to now on 30mg of prednisone is too long. After pregnancy, you say you stopped pred, did you taper off and then go back up?

It sounds like there are a few things going on. Your UC may be steroid refractory to some extent or you could have some kind of GI bug that prednisone isn't treating.

The other issue is that, if it is a UC flare up and nothing is present in the way of a pathogen, it sounds like the meds you're taking for your UC aren't helping to get you into remission. At this time, most people would probably opt for Remicade. It works fast, and it could give you results nearly overnight (for about 60% of people).

I think I remember you saying you will not consider any drugs beyond mesalamine. It's clear to me that mesalamine isn't keeping your flare up at bay. Neither is prednisone. So it's try other drugs or have surgery.The options with this illness are quite limited.

I think I would get stool tests. If it's positive for something, treat it, if not, I might still go with a course of antibiotics to see if that helps slow things. You could also try dietary changes and alternatives, such as fecal transplant, probiotics... If none of that works, and you're still dead-set on avoiding immune suppressants/biologics, I would consider surgery.

I had surgery because I didn't want to take pred ever again and I have been doing worlds better than I did with UC. I am angry that I didn't consider surgery a long time ago. I lost years trying things, each thing I tried took months to prove ineffective. If I had a family, I would want to be well enough to help provide them a good upbringing. Being sick with UC, I can't imagine that being easy. In my mind, it was just a matter of time until the next flare up, be it 1 year or 10 years down the line, I didn't care. I just didn't want it looming over my life. Plus, fighting a flare up at 30 is hard, I imagine it doesn't get easier as you get older.

Finding remission took me 2 years. Biologics were the only thing to work for me. Many of us have been where you are, it's extremely frustrating. Hang in there, maybe humira will be your solution.

Lots going in, with infant and two other toddlers, but it sounds like you are keeping your head on your shoulders which is laudable, especially since you are on steroids too.

Scope may have exasperated things.

With my husband, it took 40mg prednisone, for several months, to get things in check, at which point he was able to taper down. 22.5 mg seemed to be the magical level. But steroids really made him pretty crazy.

He had short-term success with remicade, none with humira or entyvio. Now going into fifth month on Xeljanz and so far he is in remission and hopeful. His GI had recommended starting first with Remicade. It does require a few hours for the infusion. Many people have had luck with biologics, or even with some of the immunosuppresants like 6MP. It doesn't seem like there is too much downside in at least trying some of them, except when they don't work you feel terrible and it is disheartening to be in steroids along with biologic.

iPoop said...
Remission with Xeljanz, wow, congratulations.

I thought the same but then I saw suzy's signature says, trying to get off prednisone... Hopefully the remission stays when he's off. It sounds like he's made huge progress and that's a BIG step & gives a lot of hope.