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Completely losing it...

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Ulcerative Colitis
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Posted 3/28/2015 10:07 PM (GMT 0)
I've been flaring up since November and can't seem to shake it. As Liadla wasn't working, my GI had me do some blood work and got me on 100mg of Purinethol and 9mg of Uceris, I'm still taking Prednisone as well and am currently weaning off (at 20mg right now). I'm meeting with my GI on Tuesday and I know he's going to tell me to up the dosage of Pred. to get me out of my flare up and then start weaning off, but I can't deal with the side effects anymore. I haven't gotten a good nights sleep in over two weeks, I'm breaking out on my face and back, I'm LOSING weight but look like the Michelin Man from being bloated, my mood is all over the place, my appetite is completely ****ed, my workouts are suffering, I'm fighting bouts of depression, I'm on edge, and my stomach still feels like ****. I've been dealing with UC for about four years now, and it seems to worsen with each new year. Honestly, I look forward to the few disturbed hours of sleep that I get because I can finally shut off and not have to think about, or deal, with anything. Being awake is a ****ing annoyance and I find that I can't really enjoy anything anymore. Any alternatives to Pred.?!?! HELP!
Posted 3/28/2015 10:11 PM (GMT 0)
I know what it feels like to be helpless and hopeless, you cannot trust your GI with your long term health. The prednisone will make you psychotic, moody and feel like how you are right now. I understand that feeling of neverending pain while awake, and only when you are asleep are you at peace, except when your dreams start to involve the bathroom too, then it just becomes eternal torture.

Really look into pain drugs, whatever works to take the edge off.

But I hope that the j pouch surgery is the cure. Have you thought about surgery?
Posted 3/28/2015 10:13 PM (GMT 0)
I appreciate the response, but surgery is the LAST thing I want to do right now. I'm hopeful that there's SOME form of medication out there that will work. Getting out of this current flare up without the use of Pred., though, is my main concern right now. There has to be something I can do that can take me out of this flare up.
Posted 3/28/2015 10:14 PM (GMT 0)
Wow Prednisone AND Uceris at the same time is ridiculous! Although Uceris is not as systemically absorbed as prednisone, it is a much more potent corticosteroid and any absorption will still have debilitating side effects. I think you are on way too much steroids currently, and unfortunately the only cure for steroid induced psychosis is months and months of time.

If drugs are what you are looking for then your only options are now Remicade/Humira/Entyvio/Simponi.

Post Edited (fightUC) : 3/28/2015 4:18:00 PM (GMT-6)

Posted 3/28/2015 11:00 PM (GMT 0)
Can you please creat a signature so we will know what you are on, what you were on in the past and the extent of your UC please?

What is the extent of your UC? Have you tried rectal meds? Is Lialda the only 5ASA you have taken?

I'm sorry you are at your ropes end. I have been there. While I have never been on oral steroids, I was on rectal steroids for over a year and had the same reaction. Steroids are the devil! But I agree, if other meds are not helping you, perhaps it's time to start stronger meds such immune suppressors or biologics.
Posted 3/29/2015 2:12 AM (GMT 0)
"Can you please creat a signature so we will know what you are on, what you were on in the past and the extent of your UC please? "


yes, that would help immensely :-)
Posted 3/29/2015 1:10 PM (GMT 0)
Well sounds like you have to tell your GI how bad the steroids make you feel.

I get how you don't want to look into surgery. But you sound in a very bad mental shape now... At the end of you rope and depress. Which makes it very difficult to see your options with a clear state of mind. I'm not saying that you would consider surgery if you were not in that mental distress phase but only that you would be able to see your options more rationally.

I only had rectal meds with steroids and it was affecting me a lot. So, I cannot imagine even imagine how hard it is to take them orally.

All in all I meant to say tell your GI how bad you fell on these.

Hope you fell better soon and don't give up.
Posted 3/29/2015 1:32 PM (GMT 0)
Just updated my signature, thank you for the feedback, everyone. Does anyone have any idea as to why I constantly wake up with dry mouth after a couple of hours of sleep? Is it possible it's a side effect of the steroids?
Posted 3/29/2015 2:02 PM (GMT 0)
Hey there, check out this video about systemic glucocorticosteroid side effects. This is the reason I avoid them at all costs! I can almost guarantee its the steroids causing it!

https://www.youtube.com/watch?v=VdKmfhjNqhs
Posted 3/29/2015 2:37 PM (GMT 0)
Oh boy, so you have anxiety AND on 2 steroids? That's always a fun combo...not!

Usually when I wake up with a dry mouth, it's because I was either snoring or sleeping with my mouth open. Do you know the extent of your UC? As in how far the inflammation goes? Have you ever done rectal meds?
Posted 3/29/2015 2:47 PM (GMT 0)
I have taken Uceris with no dabilitating affects. Coming down now with budesonide.

I think it's all pred and it's not worth it, you need to taper and find another solution.

I agree surgury should be last resort, there are problems with that if you care to read about them.

I am flaring since end of October and hoping 6mp kicks in.

Depression sucks, try to get therapy or read books about it and chronic illness, however don't expect the sadness of your loss of normal to go away any time soon. ;-(.

Feel better
Posted 3/29/2015 3:38 PM (GMT 0)

Red_34 said...
Oh boy, so you have anxiety AND on 2 steroids? That's always a fun combo...not!

Usually when I wake up with a dry mouth, it's because I was either snoring or sleeping with my mouth open. Do you know the extent of your UC? As in how far the inflammation goes? Have you ever done rectal meds?

I have a Deviated Septum, so I do sleep with my mouth open, but dry mouth in the middle of the night has never been an issue up until now. As for rectal meds, I asked my GI about them and he said I shouldn't have to go that route yet as there are other oral meds I haven't tried yet. That, and I'm sure he's going to want me to stick with Uceris and Purinethol as I just started them a little over a week ago. I feel like the combination of Uceris and Prednisone is what's wrecking me, though, considering they're both steroids.
Posted 3/29/2015 4:05 PM (GMT 0)
Well I have no medical back ground. But usually rectal meds are first use before using any steroids as they have almost no side effects. I would really recommend seeing another GI for a second opinion and that you ask him what were his motives to put you on steroids before even trying rectal meds.
Posted 3/29/2015 4:28 PM (GMT 0)
Sorry to hear of your bad time. I get the most awful steroid induced depression when I withdraw from it and so many doctors seem oblivious to it. I'm wondering too how extensive your inflammation is, have you you had a scope recently to know? I am surprised by your GI too saying you "shouldn't have to go down that road yet" for rectals - they have the least side effects and can be very effective if your inflammation is mainly rectal and sigmoid.

Steroids do mess badly with your mental health. What dosage did you need to be on to clear the flare?

Gabapentin is a strong drug - what was it prescribed for for you? Ativan is also a strong one. Your body/mind are really going through it with those and Pred. Did you suffer from anxiety before UC?

It is early days to know about the purinethol (I think that is 6mp?), can take several months.

I have sleep apnea and that too gets worse with each dose of Pred, I know that pred wastes muscles in the limbs but I wonder if it weakens them too in the throat area. I wake up with a sore throat every day due to it unless I wear a mouth guard.
Posted 3/30/2015 8:40 AM (GMT 0)
I can't believe he hasn't taken you off at least 1 steroid yet. When I started Uceris I was tapering the pred and we did a fast taper because the risk for Addisons was low and Uceris kept my inflammation in check. I know how badly steroids can mess you up. I've been there myself. I think you need to get off them very soon. Not saying you should fast taper. Always speak to your GI.

How long have you been on Purinethol?

Rectal meds are always helpful with UC. How is your flare doing at the moment?
Posted 3/31/2015 3:15 AM (GMT 0)
I was a mess on roids. Dependent on them. Went through adrenal deficiency in 2009 & off them since. I'll never go on them again.

An alternative is IVIG. Sounds like you need it.
Posted 3/31/2015 4:05 PM (GMT 0)
Thanks for all the responses everyone. For those asking where my Colitis is concentrated, I have Pancolitis, so, everywhere. Saw my GI today and he wants me to fast taper off of Pred, so I'll just be on the Uceris and Purinethol soon. Going down 5mg every 3 days and hoping for the best.
Posted 3/31/2015 4:20 PM (GMT 0)
That's a good plan. In my case, I started Uceris when I was on 10mg of pred. I think it's a good bridge to get off pred. I just hope your symptoms are under control because sometimes uceris alone isn't enough. with the 6mp, hopefully you're in a good position to get off the steroids completely within the next month or two. Uceris is way better than being on prednisone in my opinion. The problem with it for me, is that it doesn't work as well as prednisone. :(

How are you feeling?
Posted 3/31/2015 5:19 PM (GMT 0)

notsosicklygirl said...
That's a good plan. In my case, I started Uceris when I was on 10mg of pred. I think it's a good bridge to get off pred. I just hope your symptoms are under control because sometimes uceris alone isn't enough. with the 6mp, hopefully you're in a good position to get off the steroids completely within the next month or two. Uceris is way better than being on prednisone in my opinion. The problem with it for me, is that it doesn't work as well as prednisone. :(

How are you feeling?

I'm really hoping the Uceris works. I'm feeling somewhat better right now, my mind was absolutely decimated earlier today, though. The bloating seems to be subsiding right now, but my appetite is still nonexistent and I still have that gross taste in my mouth.
Posted 3/31/2015 5:27 PM (GMT 0)
Give the uceris time, not fast acting! Talking weeks!;/(
Posted 4/1/2015 3:14 PM (GMT 0)
I figured it would take some time to get going. I'm actually thinking I'm out of my flare up right now, and that the bloating and gas are all from the Prednisone. I just started 10mg today and will be on 5mg in two days, and then 5mg every other day for four days. Cannot WAIT to get off this crap, never, EVER taking this **** again, no matter how bad my flare up is.
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