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Crohn's Disease Forum » Support Forum » Not exactly scared, just TERRIFIED ;-)


04-12-2016, 02:10 AM   #1
Byrdfeeder
 
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Not exactly scared, just TERRIFIED ;-)

I'm a 60-year-old female who has been diagnosed with microscopic bowel disease for about the last five years. Symptoms=pain, inability to ignore a bathroom, expert consumer of toilet paper. Just being sarcastic. There is nothing funny about it. I have tried Asacol, and Apriso. I also took methotrexate for several years to treat my arthritis, with no gain in the IBD arena. Doc just gave me six weeks of budesonide, (Entocort EC) 9 pills every a.m. for one month, then taper off.

Methotrexate (MTX) is not a drug for the feint of heart, but I did well with it until it started giving me headaches late in treatment, so doc discontinued it. I wasn't really worried too much about MTX because I knew so many people on it, and had a wonderful support group to turn to. I do fine with a two-week predi burst, not so good with a dexa pack (Dexamethasone) So since I AM MAJOR SCARED of being on a steroid, even prednisone-lite, as my GI doc calls it, I thought it might be a good idea to introduce myself to a Crohn's forum.

I'm absolutely ready to feel better and to get my life back. I hope to be able to go back to work and to visit my niece's new baby in July. A lot is riding on this. But since I've had prednisone about a zillion times for my arthritis, the steroid side FX are just about tattooed on the backs of my hands.

So...about budesonide...do I need a bucket and a buffalo plaid blanket for my hump? (Hope not...although TJ Maxx has one that's really cute...) What can I expect in terms of side FX? Should I wait for the weekend to begin taking it? Anyone experience eye problems after two-months of budesonide? Please don't be shy or afraid that you frighten me. I need to know what to think about and expect.
04-12-2016, 04:52 AM   #2
mish2575
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I only have experience with Uceris, steroid that releases in large bowel. I'm not seeing any adverse effects from it.

Methotrexate put me in hospital for EXTREME exhaustion. I'm a trooper but what that did top my body was crazy.
04-12-2016, 06:28 AM   #3
ronroush7
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I have been on it for a couple of months. I think it might give me a little bit of the munchies.
04-12-2016, 03:09 PM   #4
Lizzie
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Budesonide gave me blurry eyesight for a few weeks but that seems to have improved now (ten weeks in). The initial side-effects were worse than for pred, and I never felt well for the first five weeks, but now I feel reasonably OK. Hope that reassures you slightly. No buffalo hump yet, not even hamster cheeks, and I'm losing weight, not gaining!
04-12-2016, 09:04 PM   #5
Byrdfeeder
 
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Thanks so much for your responses. I really am pretty nervous about six weeks of steroids, but it looks like you are taking it far longer.

It's great to hear, Mish, that you have had no side FX from Uceris. At least we know it is possible to take budesonide without significant side FX. Sorry to hear you had such a bad time with MTX. It can be an unpredictable drug. I got lucky and tolerated it well; just wish it had helped the IBD as much as it helped my arthritis.

Thanks, Ron, for the heads up about munchies. I wondered if that might happen. (Prednisone makes me obsess about food.)

And, Lizzie, good to know you have actually been able to loose a few pounds while on Entocort, and that you haven't seen any animal symptoms (buffalo humps or hamster cheeks)! All I need is another lump, bunch or bulge!!! Yet, I'm sorry to hear budesonide affected your eyesight. That must have been horrible, and I'm glad to hear that is easing off. Were you able to drive, read? You're my hero for hanging in with treatment in the face of such an awful side FX. As badly as I want to shed the pain and discomfort of IBD, I doubt if I could muster the determination to stick with a med if it affected my vision.

Thanks again for the benefit of your experiences.
04-12-2016, 09:06 PM   #6
Clash
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My son was on entocort for a few months with no side effects at all. He went from 9mg to 6mg to 3mg(a day).

It gave him no sideefects but didn't really do anything to help with his CD.
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C age 19
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Dx May 2014: JSpA
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PAST MEDS: remicade, oral mtx, humira
04-13-2016, 01:17 AM   #7
Byrdfeeder
 
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I'm so sorry to hear your 19-year-old son is dealing with Crohn's Disease. It is dreadful for anyone, but a teenager should be dealing with school and girlfriend issues, not a painful condition like Crohn's. I hate to hear budesonide was not helpful for him. Has anything been of benefit?
04-14-2016, 03:44 PM   #8
Lizzie
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In reply to your question, my blurred vision was not really bad and I could still read (still couldn't drive but then I never have!). I really didn't have any choice about persevering despite the bad side-effects because the alternative is biologics, and the thought of sitting there with a drip in my arm for hours at a time scares me half to death.
04-14-2016, 03:52 PM   #9
ronroush7
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If you get Cimzia, Stelara or Humira it is a shot.

04-14-2016, 05:18 PM   #10
Byrdfeeder
 
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Thanks for sharing the info about your vision side FX with Entocort. (I smiled at "still can't drive." ;-)) Glad to hear it wasn't too bad and that you were still able to read.

As far as I know, the only biologics in the U.S. that require infusion are Remicade, Orencia, Rituxan, and Actemra. I certainly understand your hesitation about infusibles. One good thing about them is that Medicare Part B usually covers IV meds, if you are Medicare eligible. Biologics are quite expensive. I go back and forth about whether to try them, but if the Entocort doesn't work, I most likely will try Humira. As a member of an arthritis forum, I have spoken with many people who use biologics and are quite satisfied with them. Their advice to me has been "fear the disease, not the meds." Still, I'm with you--that would be a big decision for me.
04-14-2016, 06:17 PM   #11
DougUte
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Hi Byrdfeeder. I have been on Humira for coming on 5 years. It is the best thing I have done for my IBD (besides my surgery). I had a flare come on and by GI put me on Budesonide for a few months. Flare did go away but I don't know if it was the budesonide or the Humira or both. Budesonide gave me no side effects. Just not sure which med gave me the results.
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04-14-2016, 07:30 PM   #12
my little penguin
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Fwiw DS who is 12 has been on humira for 4 years as well as Mtx
It does well for his crohns and arthritis
Always good to find a med that can cover both
He did remicade for about 8 months at age 8.
He didn't have arthritis then
Never buseonide but has tried most of the other drugs

Good luck
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04-15-2016, 08:47 PM   #13
Byrdfeeder
 
Join Date: Apr 2016
Just took my first dose of entocort this morning. I felt sleepy afterward and decided to take a nap, which lasted 5.5 hours. Oh boy, I hope this isn't the med. I really expected it to speed me up a little, always a blessed side effect of prednisone.

Very good to hear success stories with Humira. Makes me feel a bit more comfortable about trying it if the Entocort doesn't work out.

I have to say I am humbled to hear about children suffering from these horrid conditions. I asked my rheumy early in my treatment what her choice would be if she had a child with inflammatory arthritis, and she didn't hesitate: absolutely a biologic. More and more, it looks like these are the future in treating inflammation.

Clash, Doug, Penguin,
Any infection problems after starting Humira?
04-15-2016, 09:47 PM   #14
Clash
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Not my son, in fact, he's the one that misses bugs each and every time while it would go through the rest of the house. Now he is living with roommates at college and still no sickies.
04-15-2016, 11:12 PM   #15
DougUte
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None at all! My wife is more susceptible to infections than I am.
04-18-2016, 11:52 PM   #16
Byrdfeeder
 
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I'm relieved to hear about absence of infection while on Humira, since that's been one of my other major stumbling blocks to moving up to a biologic. It seemed like I picked up everything when I was taking MTX.
10-23-2016, 01:09 AM   #17
MizzSarah
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Little late in responding but I thought I'd add my experience on entocort. I was put on entocort as soon as I was diagnosed. Worked well for me. I'd take 9mg as soon as I'd wake up in the morning and it would almost immediately take affect. What I liked about it was that it put a coating only on the parts that were inflamed. It helped me get through work.

I was asked to taper off and boy was that a problem. Wasn't on any other medicine so entocort was really the only thing keeping me sain. On entocort alone I was never able to taper off

When I was put on Humira I would say about 6 months in I was able to successfully taper off entocort. It was less agonizing of a process.

Unfortunately I have had days where I've had to take entocort but it's not like a daily thing. I think my body senses I'm in need of my next Humira dose and just shuts down.
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10-23-2016, 10:10 AM   #18
FrozenGirl
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Just a thought: if Mtx was working for you could you switch to a different form. I know I had extreme nausea will the injection but very little with the pills. I have heard other people say they get less side effects with the injection though.
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