Entocort & headaches?

[Cat-a-Tonic]

I just started taking Entocort on Sunday, and I've had fairly bad headaches yesterday & today. My prescription information indicates that headaches are a common side effect of Entocort. Anybody else get headaches while on this drug, and if so, did they go away after you had been on Entocort for awhile, or were they pretty constant? I've got a 3 month prescription and I'd rather not have a 3 month headache if I can avoid it. It's like a throbbing head pain and it's primarily left-sided. I do get frequent sinus headaches but those are almost always right-sided, which is why I'm thinking this headache is related to the Entocort. Anybody else experience this kind of thing?

 

[Crohn's 35]

Sorry Cat, but no, when I was on Entocort I never had any side effects. Too bad it didnt work for me now.... maybe someone will come on and say what you are feeling. Hope it isnt the Entocort.

 

[Pamywyner]

I had a migraine after a few days on Entocort. Not sure if it was related but, I NEVER get migraines!?

 

[Cat-a-Tonic]

Thanks Pen, I'm hoping it isn't related to the Entocort. I took some Tylenol a couple of hours ago and I'm feeling somewhat better, although I'm really tired now. Don't know why.

Pamywyner, I never used to get migraines until I got ill about a year ago - now I get them once every 1 or 2 months. So unless my migraines get more frequent or somehow change, I know mine aren't related to Entocort but to the illness itself. But I still don't know what's causing the headaches yesterday & today. I'm hoping it's just stress or allergies or something like that.

 

[BLM]

Hey Cat, I had severe headaches the whole time I took entocort. I used Amatriptlyne to help the headaches and help to get some sleep, good luck. After about 5 months my headahces decreased to tolerable....good luck

 

[Cat-a-Tonic]

Thanks for your response BLM. I'm on day 10 of Entocort now and I've had headaches pretty much every day, although they're not severe like you described. They're more of a nuisance than anything - sometimes if they get too bad, I'll take a couple of Tylenols and that takes the edge off. Coincidentally, my GI is putting me on Amitriptyline soon too, so hopefully that will knock out the headaches completely.

 

[effdee]

I was on Entocort on and off over the years and I don't remember getting headaches. It never helped my symptoms so maybe my whole body was rejecting it.

 

[Cat-a-Tonic]

Interesting, Effdee. Where is your disease located? I read that Entocort pretty much only works on the spot where the small & large intestine meet, so if your disease is located elsewhere then Entocort won't work. Or if you've had your terminal ileum removed it won't work either. I'm undiagnosed but my pain is primarily in the lower-right quadrant, so I assume I've got disease in the area that Entocort works on. And it has been working, which has been great except for the headaches! I've got more appetite & energy, and much less d, pain, fatigue, nausea, etc. So I know it works, and I can deal with the headaches - they're just annoying!

 

[effdee]

The most active area has usually been my lower bowel, so that might be why it didn't help me. Nothing removed so far. That's great that it's helping you and hopefully you can find something to alleviate the headaches.

 

[Cat-a-Tonic]

Thanks. Nothing seems to alleviate the headaches for long. Sleeping and Tylenol both work for a little bit. I took some Tylenol PM last night because my head was throbbing and I knew I needed some help falling asleep. I woke up feeling great, but the headache came back after I had been awake for about a half hour. Oh well, it's not been too bad with the exception of last night. As long as it doesn't get worse or turn into migraines or anything like that, I'll get through it.

 

[Astra]

Weird that Cat!
I got neuralgia on Entocort, just like that, outa the blue! One sided throbbing pain in the head, and that's why I'm on Amitriptyline, and it's nearly gone!
Loving the amitrip tho!
xxx

 

[Cat-a-Tonic]

Thanks, Joan! My GI said he wants to put me on Amitriptyline in about 6 weeks, but I'm thinking of calling him and seeing if I can start it sooner than that because of the headaches. I don't remember if there was a reason for him waiting 6 weeks, but he's usually pretty good about letting me start meds sooner rather than later if I'm not doing well.

 

[Astra]

Hiya Cat

yeah ask him, I was on Entocort, now on Pred, so the amitrip isn't interfering with my meds at all, but I feel sooooooooooo good! I told ya how calm I am? It's amazing! Nowt is bothering me at all, even on Pred!! lol
Last week I had a gas leak, and I never batted an eyelid, I was on the phone for hours to them, and never flipped me lid once! That's soooooooo NOT me normally!
My friend is on it too for migraine, the effects are outstanding, she feels so much better, and sleeping well for the first time in months!
xxx

 

[Cat-a-Tonic]

Thanks, Joan! I put in a call to my GI's office and left a message with his receptionist, waiting for a call back. I'm hoping he can put me on the Amitriptyline soon. It sounds lovely, I hope it makes me as calm as you!

 

[Cat-a-Tonic]

Update: I just got a call back from my GI's nurse. She said my GI is not going to be in the clinic until Thursday. Ugh! His nurse said she'd try to get the message to him sooner than that, but I suspect I'll be waiting until Thursday to hear back about the Amitriptyline. So I have to deal with at least 3 more days of these headaches. I'll post an update when I do finally hear back from him.

 

[Astra]

Bummer!
hope you hear a defo Yes on Thursday
xxx

 

[Cat-a-Tonic]

Thanks Joan, and good news - I heard a yes today! Just got off the phone with my GI's nurse, she did manage to get the message to my GI and he sent off the prescription for 25 mg of Amitriptyline to the pharmacy this afternoon, so I get to pick it up after work and take it tonight before bed.

I got mad for a minute, because when I first talked to the nurse, she said, "The doctor has some recommendations for your headaches. The first is to take two Tylenols..." I was about to get upset at her and say that I've already tried Tylenol and it doesn't do much! But then she said that the prescription for Amitriptyline has already been sent to the pharmacy, so I was relieved.

 

[BLM]

Hey Cat!! So hows it working for you?? Ive not taken it in a while, but Im so exhausted and cant get a good night sleep, Im thinking of taking some tonight just to sleep. I hope it works for you, it was a wonder drug for me

 

[Cat-a-Tonic]

I've taken Amitriptyline for just 2 days now, but it seems to be working really well. No headaches for the past 2 days! And it's nice being able to get a full night's sleep too. No side effects so far either. The day after I first took it, I was super groggy for most of the morning, but this morning I'm not very groggy at all and just feel good. It's great, no gut symptoms and now no headaches - I'm almost human again!

 

[rottengut91]

Sounds great Cat...hope it continues. Enjoy the wellness!

 

[Dexky]

Hi Cat, sorry I missed this!! I'm glad they gave you the amitriptyline!! He seems to be listening to you anyway!! Glad you feel better!!

 

[Cat-a-Tonic]

Thanks Mark & Julie. I'm on day 3 of the Amitriptyline and I had the most minor of headaches when I woke up, so I took some Tylenol and it went away and now I feel fine again. The Entocort is still working well too, so it's been another good day. I'm trying to enjoy the good days, but I'm almost suspicious, you know? Like, I know bad days will be coming back, it's just a matter of when. I know I shouldn't think that way, but after being sick as long as I have and then suddenly feeling okay again, it is just unnerving somehow. But I am thankful that my meds are working and that I'm actually feeling mostly human for the time being.

 

[DustyKat]

Good for you Cat! I so hope these meds work for you and I think we all know what you mean about waiting for the sky to fall in again!!!

Keeping my fingers and toes crossed, :hug:
Dusty

 

[Astra]

Hey Cat!

This is great news! soooooooo happy you're happy and feeling well, you deserve a break, so enjoy it!
I've only got one weeks supply of amitrip left!! Oh No! need to phone the doc quick!
hope he doesn't say I can't have any more, I'll cry me leg off!
stay well hun
xxxx

 

[Cat-a-Tonic]

I hope you get more Amitriptyline too, Joan! My GI prescribed me over a year's supply (I've got 30 days worth in hand and 12 refills on my prescription). So I'm happy with that! It's still working well, I had another minor headache this morning, but I expected that because I slept in, and I always get headaches when I sleep in for some reason. So I took another Tylenol and no more headache.

 

[Dexky]

I had another minor headache this morning, but I expected that because I slept in, and I always get headaches when I sleep in for some reason. So I took another Tylenol and no more headache.

Hey Cat, finally something I can identify with!! Me too!!

I'm glad you are finally getting some relief!!