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Should I be worried no meds are working?

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Posted 9/2/2013 4:33 PM (GMT 0)
Hello, I've posted a few things lately as I have been going through my first "flare" if you will...I was diagnosed this past Feb and have yet to see a "normal" day since, seems to be getting worse by the day! I cannot take anything with Mesalamine, I've been on 40mg Pred for the past 3 months will absolutely no change, just worsening symptoms and nasty side effects. My dr just put me on Uceris about 4 days ago, I know it may take a while to see a change, but should I be concerned that the Pred isn't working? Or that things seem to be getting worse? I am up all night with blood and D, severe cramping that has me in tears most of the time. I'm getting frustrated and depressed that this will never go away. The side effects ans things that happen to people from the immunosuppressive drugs scare the living day lights outta me, but my dr doesn't seem too ready to go there yet, but I know it's coming. Just starting to get worried that I'm going to be one of those "hard cases to crack". My sister has UC as well, takes a couple meds a day and has been living her life perfectly fine since she was diagnosed a few years ago, I envy her and I'm guessing she's not the norm??

I currently don't have a sig with all my meds since they have been changing so much and nothing has been consistant.

40mg Pred
Uceris
Align probiotic the dr gave me samples of
Posted 9/2/2013 4:51 PM (GMT 0)
ya, good or bad, there is no norm - be nice if she was tho -

I tend to not worry about things since it never seems to change anything - I instead get pissed - that always improves things ;-)

butt meds ?

what was your dx ?

Posted 9/2/2013 4:57 PM (GMT 0)
First colonoscopy wasn't difinitive, my doc said it was UC and mostly based it on my sister having it as well. When things got worse, I had a flex sig done in May and was confirmed UC up the left side.

Cannot do Rowasa or anything with mesalamine, tried Cansasa a while ago but it did nothing. Not on any rectal meds now.

I'm a worrier. I worry and stress about everything, even when I feel calm, my mind is constantly going!
Posted 9/2/2013 5:25 PM (GMT 0)
Honestly, your doc is an idiot for not prescribing some other med. You need something other than steroids to treat your UC since you can't stay on them for forever. I get that you're scared of the other drugs, but you have to try something! Maybe look into natural ways/diets if you really don't want to use the immunomodulators or biologics.
Posted 9/2/2013 6:23 PM (GMT 0)
What is your sister taking?
Posted 9/2/2013 6:52 PM (GMT 0)
Three months at 40 mg of prednisone is ludicrous. If you haven't seen any improvement yet, you aren't going to, and you should be exploring plans to try something new and get off of prednisone.

The side effects of immunosuppressants are overblown. I would rather be on 6MP or Remicade than on 3+ months of high dose prednisone. And yes, 40 mg is considered high dose.

I think you need a better doc.
Posted 9/2/2013 7:02 PM (GMT 0)
My sister is on Lialda and Azathioprine, was hospitalized at first when they found out what was going on, but has been doing fantastic ever since.
The doc I'm seeing now is actually my second one, the first just kept me on the Pred even though it wasn't doing anything, kept trying me on mesalamine meds when I kept complaining of worsening symptoms. This new doc put me on uceris after one last ditch effort at the Rowasa enemas. When I asked about the Azathioprine, 6mp etc...he said that those take 3 mos to work and that he wanted to try uceris. I'm guessing its because he wants to find something to help now?? But if it takes 3 mos to start working, I should probably start it sometime soon then huh?
Also, my symptoms seems to be ok one day (and by ok, I mean I don't wanna die) and the next day, it's right back to miserable. Is it normal for things to fluctuate so much, or is it something that I'm doing to hurt progress??
Posted 9/2/2013 7:29 PM (GMT 0)
What is your diet like? Some foods make UC a lot worse. I have to limit fruits, veggies (especially raw), nuts, and fiber. I also can't drink fruit juices. I am also histamine intolerant and have to limit aged cheeses, pizza, and yeasts, unless I take the digestive enzyme DAO. Alcohols also aren't good.
Posted 9/2/2013 7:34 PM (GMT 0)
Well right now it isn't much, I'm so nauseated and in pain most of the time :(
I'm eating chicken noodle soup, scrambled eggs, toast with butter, occasionally some honey Greek yogurt from trader joes, crackers and the occasional Popsicle ...and that's about it. I'm terrified to eat, I'm already feeling horrible, scared what other things might do.

I feel like I'm getting more and more gas/bloated by the day, I was attributing this to the Pred, or could be the uceris? It's the worst symptom I have, I can deal with almost anything except this pain! I use a heating pad when at home, but I constantly feel like I need to go to the bathroom, but nothing happens most of the time. It's really bothersome.
Posted 9/2/2013 10:17 PM (GMT 0)

Pluot said...
Three months at 40 mg of prednisone is ludicrous. If you haven't seen any improvement yet, you aren't going to, and you should be exploring plans to try something new and get off of prednisone.

The side effects of immunosuppressants are overblown. I would rather be on 6MP or Remicade than on 3+ months of high dose prednisone. And yes, 40 mg is considered high dose.

I think you need a better doc.

Please take more notice of this post.

Get off the Pred; do not pass Go, do not collect £200, just start tapering. Sadly you cannot stop cold turkey; it will be too dangerous, so you will have to taper. 5mg/week will be perfectly safe down to 20mg, but after that you should probably go more slowly, considering the length of time you have been on a high dose.

The side-effects of immunesuppressants are vastly overblown. You should be far more scared of Pred than of azathioprine or Remicade. Azathioprine and 6MP do take about 3 months to start working, unfortunately. But once they kick in (hopefully), you can stay on them safely for years. I recommend starting on Aza or 6MP as soon as possible instead of waiting to see if Uceris works or not. (As Uceris is also a steroid, that's even more reason for tapering off the Pred!)

As far as your sister is concerned, she was luckier with her disease (or response to meds). Similar boat; I didn't respond to anything, my brother has been mostly in remission for 15 years and has never needed surgery. It's not only possible for a person to have severe disease while a close relative has a milder form, it actually seems to be relatively (as it were) common. It's absolutely no one's fault; try to forget about your sister and concentrate on yourself.
Posted 9/2/2013 11:01 PM (GMT 0)
I agree with the Pred, so frustrating to be on it so long and not see any kind of results, I'll start the taper. I actually am supposed to call my GI tomorrow and tell him how the uceris is going, I also have an appt this Friday, so I'll talk more in depth about other meds then.

When this all started in Feb, I was told it was "mild UC proctitis"...then my flex sig in May showed it going up the left side 24in, can it really progress that much so soon? I feel like people with this disease are at a constant battle, and sick a lot of the time, is that what kind of life I'm in for? It just seems so daunting to get rid of this when things that are supposed to work just don't. Thanks for letting me vent, I'm a little scared about all of this!!!
Posted 9/2/2013 11:23 PM (GMT 0)
When it was suggested to me by my GI that he may want to put me on 6MP if I didn't get out of this flare soon, I was sad about it. I didn't really ever want to "graduate" to the next class of drugs. But, I've had it with this flare, I've had it with this cycle of six months on flare, six months off I've been in for the past few years, and I am ready to move on to new treatments that may give me years of remission.
From what I've learned in here, the immunosuppressants are not side effect heavy, most people have none after the initial adjustment to them, and I am soooo ready for it now.
I am calling my GI tomorrow to ask him to put me on the 6MP with a course of pred to put me in remission while the 6mp kicks in. I'll take the drugs if they put me in remission. Bring it on.
Posted 9/2/2013 11:24 PM (GMT 0)
I just can't believe any doctor would keep you on that dose of that Pred for the length of time, tbh. I've taken Pred loads of times and was always put on 5mg/week taper, starting at 40mg. Was only given enough tablets for an 8-week course, too*. But on here I've heard some almost unbelievable stories of how long patients have been on steroids for... Doctors! *shakes my head*

Yeah, UC can progress that fast :-/

I don't know if this is of any comfort or not, but the people you hear from on these forums tend to be the intractable cases. Not everyone of course (there's a few who are in remission), but a disproportionate number by far. People with mild or well-controlled disease don't tend to join forums, 'cos what's there to talk about really? I was exactly in that position; diagnosed in 2000, mild disease for the first five years, the thought of joining a forum never even crossed my mind. Wasn't until I'd been suffering for a few years that I felt compelled enough to join HW; partly to ask questions, partly just to b**** about how bad I felt >_>.

Conversely, people who are posting during flare-ups often leave once they get into remission. Occasionally, a person will come back after being away for a few years because their disease has come back.

So not everyone with UC is fighting a constant battle, is in pain all the time, etc. The majority aren't. The bad news is that a minority are :-/ If worse comes to worse, there is always surgery. It's not the ideal, but for 99% of people who have it, it's a vast improvement. Hopefully it won't come to that, but at least you know there is an alternative to a life of pain and misery.

Hope this helps a little bit...
Posted 9/3/2013 12:04 AM (GMT 0)
You have a lot more drugs to try before you're at the end of the list :)

I am just about at the end of the list of traditional medicine's options. My GI will prescribe off label and put me in trials too, but she still thinks I am a surgical candidate.

Nothing has put me in remission so far, and I've been plugging away at it for two and a half years now.
Posted 9/3/2013 12:43 AM (GMT 0)
NiceCupofTea, yes that does help me, thank you for the kind words. I guess what I was hoping to get out of a forum is just some information, hoping to try and make my own desicions as far as this UC thing goes, as I can already see, drs can make a mess! I'm feeling all bloated from this steroid, I can't believe I haven't balked more and tapered myself until now, I was just trusting my dr to know when too much was too much of it. I think I need to put the forum and the google down for a while, I just see all these horrible stories and it's really making me sad, not just that I have to deal with this disease, but that anyone has to go through any of it, it really hurts my heart.

I really just want my life back, I've missed a lot of things so far in trying to get this under control, it's a little unnerving.

Once I start to taper the Pred, will my horrible moon face go away?? I do not look the same as I did 3 mos ago :(
Posted 9/3/2013 1:10 AM (GMT 0)
The moon face will go away in a few months, don't worry about that. Good luck to you. I know there are a lot of sad stories but there are a lot of success stories too :)
Posted 9/3/2013 1:14 AM (GMT 0)
yes, the moonie will go away :-0
Posted 9/3/2013 2:58 AM (GMT 0)
I just wanted to give you a virtual hug mollymom! Good luck!
Posted 9/3/2013 8:03 AM (GMT 0)
Hello,

40 mg Pred didn't do anything for me either. I got on 60 mg but I still bled. Then I started Uceris and after 2-3 weeks I was symptom free. I also started Imuran and have been symptom free ever since.

Wish you all the best.
Posted 9/3/2013 11:40 AM (GMT 0)
I wanted to chime in. I hope you find this story a story of hope rather than depressing. I was basically in perpetually flare from 2007 till march of 2013. I had a stent in there where I did Remicade and I got better but I got an infection and had to come off before I could get a clean scope. But for this whole period i never went less then 6xs a day. when things were super bad it was 30xs a day and blood.

In Dec 2012 on New Years Eve I started Humira. Around that same time I started the probiotic VSL 3 DS. I will tell you my luck with VSL is way better than the standard story. First day I had VSL, I did not have a bowel movement for 48 hrs. I actually got worried I had a blockage. I didn't have any pain or anything but like I said never less than 6xs. This is not typical. My story is too good they couldn't even put me in the commercial if they had one. Lol. But you could see improvement. It is expensive but the DS is sometimes covered by ins. I am happy to report I am in full remission verified by scope. If I take my VSL I only have one or two movements a day.

Also lots of people like to try a diet where they stop gluten or dairy or both and see how they feel. Many people with UC have cross intolerances even if they test negative. There are also tons of other OTC things you can try black cherry concentrate, ginger, turmeric, manuka honey, blackstrap molasses, nicotine, and many others. Check out the first or second post at the top.
Posted 9/3/2013 3:07 PM (GMT 0)
Thanks guys for the suggestions and kind words...I've heard good things about the VSL #3, but honestly I'm scared to try it! My dr gave me align to try and all I've noticed is horrendous bloating and gas from it when I take it....could be that it's just not as good of a quality.

My mother in law regularly sees a naturopath where she loves who has helped her tremendously with her colitis issues, I actually managed to get an appt this thurs to see her, I am hoping she can help guide me with some all natural things I can do to help get this inflammation under control. I believe that supplements and diet play a huge part in this disease for some, I just need someone to tell me what to do, I've done some research but really I'm just walking around in the dark hoping to find something that'll work.

I think the uceris has started to help a bit, my cramping doesn't seem to be as wide spread as it was the other day, mostly I feel the cramping and pain right behind my tailbone, which is really killer. I'm guessing its from all the inflammation down there, taking Tylenol doesn't really help.

Imagining the magnitude of this disease that honestly, at first, I didn't think would take over my life like this, is just crazy. I just want to feel better and am getting frustrated that it seems to be getting worse. Well, lots of prayer and positive thoughts are what's gonna get me through, I know at some point, I've got to feel better!!!
Posted 9/3/2013 3:17 PM (GMT 0)
I'm glad to hear the uceris is starting to help. The bad news is that Uceris is also a steroid. You won't be able to use it for the long term, so you still need to find another solution. I agree with everyone here that azathioprine is a reasonable option for you, especially since your sister's history is successful. It is worth a shot. You should start it now, so it can build up in your system while the Uceris and the pred continue to help too.
Posted 9/3/2013 3:18 PM (GMT 0)
 "but really I'm just walking around in the dark hoping to find something that'll work. "

well if it makes you feel any better, pretty much all of us have been/are/will be there !


"Well, lots of prayer and positive thoughts are what's gonna get me through, I know at some point, I've got to feel better!!!"

:-)

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