Budesonide/Entocort and Depression

[Sandy]

Hey guys,

Here's a question for ya. I've had Crohn's in the sigmoid colon & rectum for over 45 years. For the first 35 or so the inflammation (pain, D and constipation due to rectal stricture) came and went, severe anxiety with the restroom, etc. Finally I found a combination that really worked, nightly Rowasa enema with budesonide powder mixed in. This combination has kept me in remission basically for ten years.

Meanwhile, though, my emotional life was pretty much a shambles. Wonderful wife and good job, but pretty much unrelenting depression, anxiety, irritability, and anger issues. Much of this is from having Crohn's (and getting lousy medical care) as a child, including proctoscopes without anesthesia, a pedophile doctor (only once, thank goodness), nasty doctors yelling at me, nasty nurses, etc. And back then colitis was thought to be psychosomatic -- the message I got was "why are you so screwed up you have this disease?"

And, of course, I felt like a complete alien in school.

With therapy and some antidepressants I began to make headway on dealing with my problems, but it was taking a long time. It takes a while to sort through your personal demons! Meanwhile I was also trying to get down off the budesonide, very s-l-o-w-l-y -- every time I went down too fast, the symptoms returned. Finally I got down from 6 mg to 4 mg a night. Symptoms returned (stress at work, I think) and I had to go back up to 5 mg a night.

WHAM! Depression anxiety irrascibility anger irritability frustration hatred. All this crap filling my mind!

And I had NO idea that the budesonide was doing this to me! I knew steroids can cause depression, so I knew it was probably making things worse. But this was almost like psychosis! Now I've got to get off this stuff.

Has anyone else had a similar story -- that is, genuine issues to be worked out due to the disease, that were or are exacerbated by budesonide?

Thanks for any and all replies --

Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid

 

[carrollco]

Hi, Sandy. I'm new here so I don't have many answers, but for over 25 years the docs told me my diarrhea was irritable bowel caused by anxiety. (No test were ever performed.) They gave me every antidepressant under the sun and while they worked for my depression, they never cured my diarrhea.

Then about a month ago, the pain became horrendous with a lot of blood. They scheduled me for a colonoscopy and I had 3 ulcers in the colon and one at the small bowel. They did a biopsy and it came back as Crohn's. (I have no idea how a biopsy can tell you if it's Crohn's.)

After the colonoscopy my symptoms were exacerbated 10x. I've never been so miserable as these last two weeks. I found myself crying all the time, anger at everyone, and being just plain miserable. Talk about depression, anxiety, irrascibility, frustration, and to be truthful, fear.

That said, I don't think Lialda caused those feelings. Maybe other drugs can intensify them, but I think underneath it all, you really feel those things, only they are amplified under the steroids. Think of it as RoidRage.

I wont go on any steroids just because I think it will exacerbate how I already feel. Maybe I'm wrong, but only time will tell.

So, while I really can't help you, I feel your pain, anger, and frustration.

Warmly,

Louann

 

[Jessica]

I've been on Entocort for 2 yrs 1 month. I know that because I'm doing everything in my power lately to get off of it. Even finding a new doc since my current one isn't comfortable with his own expertise to put me on anything more powerful.

For the most part, I've fluctuated between 6mg and 9mg doses in this period. However, I'm on 9mg now since some time in September.

If I let my guard down right now I would scream and cry in a fit of rage and sadness until I passed out under my desk (currently at work). And it's not just because I'm working and today has been a particularly rough day. It's because my boyfriend looked at me wrong last week, his mother asked me a question in a funny tone yesterday, my mother didn't go up to see my grandfather right when she found out he had a stroke, my father still doesn't know what time X-Mas Eve dinner is at his house... do you see where I'm going?

It doesn't matter how many times I read that Entocort is different that Prednisone. It doesn't matter how many people tell me it's less powerful. And it doesn't matter how many times my doctor tells me it breaks down in 10-15 mins (if I even believe what he says anymore).

It's the Budesonide. And I have to remind myself this everytime I open my mouth or my ears (or eyes in the case of this forum). It's life altering. It's an emotional magnifier. And it sucks.

I swear, if I don't find a doc that can help me soon, I might just go on an Ensure/Water only diet and take myself off of all these pills. But I have to keep telling myself, that it will all be better soon. Once I find a local doc that's f**king intelligent enough to help me before I give up on all of this.

<3 You're not alone.

 

[Sandy]

Hi Louann,
Thanks for your comments! I think you're right -- sometimes there's a good reason to feel depressed or angry, then a drug comes in on top that amplifies it. It was just so overwhelming to feel SO bad so suddenly after increasing the drug. But I guess in a way it was a good thing -- it gave me information -- maybe if I can lower the dosage, some of the amplification will go away. I know there will always be (emotional) good days and bad days, but at least I can hope for more good days (and less terrible bad days).

And I hope so for you too. I'm sure the clouds will lift for you. It is possible to go on with your life despite (or maybe even because) of the disease. I wouldn't be who I am now if I didn't get Crohn's at 9. I probably wouldn't have gone into biomedical engineering, and seen a whole lot of cool medical stuff along the way. Trust me -- though it may seem crazy, but having this complicated, unpleasant, frustrating, unpredictable disease will enrich your writing!

Jessica, thank you, too, for writing. You describe exactly what I feel, only it sounds even worse for you! I'm so sorry it's so bad. I hope you can get a doctor who can help you more! I think the first thing I learned when dealing with the real part of my depression years ago was that it was important to find the best doctors possible. I was lucky, I think; my GI doc is terrific. We really work as a team; I think he trusts me like I trust him.

Saying that budesonide breaks down in 10 or 15 minutes is just silly if you ask me. I think it's much more like prednisone than the manufacturer would like to admit. I've heard that some people using pulmicort (budesonide for asthma) also suffer greatly from depression.

The hard part about Entocort (and budesonide) is that I don't think there is much known about budesonide and IBD. Certainly my doc and I are playing in the dark (so to speak; ecch, bad pun). I have a very hard time getting off of the drug. Does Entocort still only come in 3 mg pills? Do you have any success tapering off with that big a dosage? I have a hard time tapering from 6 mg to 5 mg (I can get any dosage in my compounded budesonide). I can't imagine trying to go direct from 6 to 3 mg.

If you get a new doc, you might ask him. And see if you can get it in 8, 7, 5, 4, 2, and 1 mg somehow! Maybe you can get off it better that way.

One caveat -- you can't use pure compounded budesonide orally. Entocort has a special coating, that keeps it from being absorbed till it gets near the colon. But I wonder if a pharmacist could take a bunch of 3 mg capsules, pull them apart, and formulate some 8 mg, some 7 mg, and so on, so you could taper slowly. But I wouldn't go cold turkey; your body wouldn't like it! Trust me! Talk about withdrawal. Even 9 to 6 to 3 mg would be better than that.

Good luck to you both!

Hugs,
Sandy

 

[aliciars]

Oh thank the heavens above ... I'm not nuts!!! I've only been on prednisone, but was entertaining the idea of entocort. Have it on my list of questions to ask my doc at my next visit. I'm tapering off of prednisone right now because I can't stand myself on it any more. Been on it for 5 months and had enough. I thought I was going to rip my microwave off the wall a few weeks ago after my 4 year old spilled his yogurt. That was it for me. I don't care if I bleed 20 times a day in the toilet - there has got to be a better way.
I thought I was losing my mind - glad to see it's not just me. I'm at 10 mg prednisone now. the bleeding is coming back nice and strong. Oh well... get me something else. I'm also on Humira.

Hope we all have more good days than bad, and people, stay out of our way!!!

 

[Entchen]

So, um...I decided on the weekend that two of my best friends had conspired not to be friends with me anymore, because I hadn't heard from either person in a little while. I phoned one of them in a panic, expecting him to hang up... and he sounded delighted to hear from me.

Thanks, Entocort.

I was angry on Pred, and so far on Entocort I am anxious (and apparently just a "teensy bit" paranoid). But at least I'm not gaining weight like crazy...? Lol. I am pretty sure part of the anxiety comes from concern about starting Imuran tomorrow and wondering what effect it will have (if any) on my life for the next couple of months and beyond. But I think the Entocort is a contributing factor, too, because normal anxiety doesn't take zero evidence and decide conclusively that my best friends have dropped me. And does my meds-addled brain think we're in junior high school or something? Give me a break.

 

[Jessica]

Sandy - I can usually tapper from 9mg to 6mg with no problem. It's going lower than 6mg that my body doesn't like. Since I know it's losing it's effectivness lately, I don't even know how I would do going lower than the 9mg I'm currently at.

Aliciars - There definitely has to be a better way!! And hopefully we can all find it before someone does get in our way.

Kelly - I agree, at least I'm not gaining weight like crazy anymore.

 

[crankypants]

I was angry on Pred, and so far on Entocort I am anxious (and apparently just a "teensy bit" paranoid).

Entocort messed with my dreams - every night was clenched anxiety... never quite into the realm of nightmares, but definately prevented a restful night of sleep the whole 6 months I was on it.

Not sure the dosage I was on, but I was taking 3 a day the first month, 2 the second, then down to 1, but then back to 3 after a flareup. The level of anxious dreams were directly correlated to the number of pills I was on, and after a week or so of getting off the stuff, my sleep went back to proper slumber.

Just my related 2c that probably won't help, except to letchya know that it's not just you

 

[Cat-a-Tonic]

I haven't experienced depression from Entocort, as far as I can tell, but I also have had problems tapering. My GI put me on 9 mg for 6 weeks and then told me to taper down to 6mg. Within a few days of tapering, all my symptoms came back and I was in a full flare. So my GI said to go back up to 9 mg for another 6 weeks and then try tapering again. Within 2 days of going back up to 9 mg, I felt almost totally better again. I'm supposed to try to taper down to 6mg again at the beginning of January, and I am NOT looking forward to that. Good thing my sick leave from work starts over at the beginning of the year, I might need it!

I've also experienced chronic headaches from the Entocort, which I'm taking Amitriptyline to treat (it just seems wrong to take a med just to combat the side effects of another med!). I have gained a little weight, probably about 10 lbs. Not too bad, I'm happy as long as I can still fit into my clothes and don't have to go out and buy new ones. No other side effects as far as I can tell. I also wish there were a better way - if I have problems every time I taper, that's not good.

 

[Sandy]

Listening to all of you makes me realize that the side-effects of this stuff are not just limited to depression. I thought it was just me dealing with "issues!" I thought I had an anger disorder or something. (Well, I did fly off the handle on occasion before I got on budesonide . . . )

I just received an order from the mail order pharmacy today -- compounded budesonide in 4.75 mg (30 days), 4.5 mg (30 days), and 4.25 (30 days). Maybe now I can taper from 5 mg without a flareup. I don't just don't understand how you guys can taper from 6 all the way down to 3 on Entocort. I just don't understand that stupid company for making the stuff in such large increments. I gotta look into this. (I work for the, uh, FDA, though in devices, not drugs.)

Thanks, Aliciars, Kelly, Crankypants (love that!), and Cat-a-Tonic (got a cat on my lap right now), for all your support! And Jessica and Louann too.

All the best,
Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid

 

[tinahs1962]

I recently started on entacort, 3mgx3 a day. Which I have to set an alarm for 5am to take or I'll be awake all night long.. . Since starting, I've been having headaches and sweating profusely! Like my hormones are out of wack. I hate this stuff! I've only been on it about 3 weeks, can I quit it cold turkey?? Or should I start reducing it to like 6mgs then see if I feel better. I'm so I'll too, Omg!! Hateful and just hate myself!!
Thanks
Tina