Budesonide......it is working but jittey and can't sleep!

Camie · Post by **Camie** » Mon Aug 13, 2012 7:32 pm

Hello to all,
The budesonide is working! :)

Confession from a good Catholic girl.

I am supposed to be taking 3 3mg of budesonide daily. I have found that the nine mg. dose makes me jittery. Now I am waking up at odd hours unable to go back to sleep. So best I can do is two a day........less jittery but still not sleeping.

Ok I see the GI doc next Monday. I am trying to be a compliant patient. So I took the 9mg dose today and figured I would take it all week. !!!!!!!!!!!!!!! My system is is overdrive today! So wired today!

I know this is a side effect.

Anyone else out there experience this side effect?

It is working...... :)

Post by **tex** » Mon Aug 13, 2012 8:12 pm

Hi Camie,

It's good that it's working, but sleep is vital if you are to heal, and to function normally, especially if you are working. I would try cutting the dose down to 1 capsule per day to see if it still provides control. We all respond to medications differently. We have at least a couple of other members who cannot take more than 3 mg per day without either serious neurological side effects or C. For them, a single 3 mg capsule provides good control of their symptoms, without causing adverse side effects. When it comes to corticosteroids, there is absolutely no reason to take more than is needed to do the job, because higher doses just compound the side effects with no gain of benefits.

If 3 mg doesn't do the job, then it will be necessary to increase the dose to regain control.

Tex

fatbuster205 · Post by **fatbuster205** » Mon Aug 13, 2012 11:54 pm

Hi Camie,
I too am on 9mg and experienced the same for about three weeks. I am definitely coping better now but my symptoms are still not the best! It is a heavy duty medication IMO but you may find your body tolerates it better after a while.
Anne

MaggieRedwings · Post by **MaggieRedwings** » Tue Aug 14, 2012 5:01 am

Hi Carrie,

When I was on it I had the same side effects as well as very bad dizziness. Just could not cope with it and went diet only. Hope you do better than me.

Love, Maggie

mzh · Post by **mzh** » Tue Aug 14, 2012 5:04 am

Poor sleep here too some nights, even with a BiPAP machine and exercise during the day. I'm on one Entocort a day.

Camie · Post by **Camie** » Tue Aug 14, 2012 2:35 pm

I just took one today and will see how it goes
Thanks for responding :)

Leah · Post by **Leah** » Tue Aug 14, 2012 8:08 pm

It's so weird how different people respond differently. I didn't get any of the jitters, but I think the less you can take the better. Hope the lower dose works for you.

Leah

Sue777 · Post by **Sue777** » Wed Aug 15, 2012 11:31 am

I just took my very first dose of Entocort (generic) this morning: 3 - 3 mg. caplets. Not that I want to bring them on, but how soon will I start to feel side effects if I'm going to?

Better yet, how soon might I see relief? I am feeling less pain and a sort of "calm" in my stomach today but I'm sure that must be a placebo effect - it can't be providing some relief already, can it?

Sue

Leah · Post by **Leah** » Wed Aug 15, 2012 11:54 am

Hi Sue. I felt relief almost right away and was actually going to the bathroom only once a day within a week. I guess I am one of the lucky ones since I never got any side effects either. I am now only taking one pill every three days. My BMs are not norman, but I think I am close to being off of it completely. I was just food poisoned horribly, but am my old self 2 days later, so I am definitely healing. I hope it works as well for you!

Leah

Sue777 · Post by **Sue777** » Wed Aug 15, 2012 12:15 pm

Leah wrote:Hi Sue. I felt relief almost right away and was actually going to the bathroom only once a day within a week. I guess I am one of the lucky ones since I never got any side effects either. I am now only taking one pill every three days. My BMs are not norman, but I think I am close to being off of it completely. I was just food poisoned horribly, but am my old self 2 days later, so I am definitely healing. I hope it works as well for you!

Leah

Wow, thanks so much for the encouraging news..... really gives me an optimistic outlook which I haven't been able to muster lately.

I was one of the few lucky ones that had great success with Asacol.... here's hoping my luck continues with the Entocort, and, if it does, then I'm gonna take that luck to the casino!

mzh · Post by **mzh** » Wed Aug 15, 2012 2:04 pm

I felt relief in 3 days but a friend with LC hasn't had much relief from it at all after being on it for 2 months so, it's hard to say what will happen! I had to quit coffee to get results the last round but she's still drinking coffee so that could be her problem. It's hard to know what to do sometimes.

Leah · Post by **Leah** » Wed Aug 15, 2012 5:24 pm

Has your friend also changed her diet? I used the time I was on Entocort to radically change my diet. I believe that's why it worked so well for me.

Martha · Post by **Martha** » Wed Aug 15, 2012 6:15 pm

Sue, I also noticed improvement with Entocort in about a week, and experienced no side effects, except for pale yellow stools for about a week. I was on Entocort for 3 months (9 mg. per day), did not change my diet, and felt great. One nice norman a day.

I had not heard of the diet connection at that time. After the 3 months on Entocort, I went off, as the doctor had told me, and relapsed within a month, also as the doctor had told me to expect. He gave me another prescription for Entocort, but that's when I started researching online, found this forum, and made changes to my diet.

If I had it to do over, knowing what I know now, I'd definitely do as Leah did, and use the grace period offered by Entocort to remove gluten, dairy, and soy from my diet.

I hope you have no side effects from Entocort, and that it works well for you.

Love,
Martha

Mim18 · Post by **Mim18** » Wed Aug 15, 2012 8:07 pm

Hi Camie,

Being wired is a side effect that I did NOT have. It did seem that I had weird dreams waking me up more often (usually between 4 and 6 am). Overall, the results were good for several months. Right now I seem to be getting immune to the good effects (after 5 months). I really wish it still worked like it did in the first few weeks.

Marion

Sue777 · Post by **Sue777** » Wed Aug 15, 2012 9:35 pm

I'm not jittery or wired (yet - only had my first dose today) but I am full of energy tonight and I don't know if that's coincidence, or the fact that I haven't been in the bathroom as much as usual getting drained, or if the Entocort is giving me energy, but I am getting SO MUCH done and I just want to keep going!

Question: why is there mention of using the time while on Entocort to eliminate possible trigger foods? Why not experiment with diet while you're in the midst of the flare - is there any advantage to doing it while you're feeling good?

Sue