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Pentasa and headaches

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Crohn's Disease
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Posted 3/8/2009 11:34 PM (GMT 0)
about 3-4 weeks ago, I started taking Pentasa after finally being diagnosed with Crohn's. For the past week, I have been getting really intense headaches every time I stand up (doesn't matter how slowly I get up), that taper off after about 20-30 seconds, but still leave me with a dull throbbing pain in my head that doesn't seem to go away. Has anyone else experienced this before? I'm not sure if it's related to the Pentasa or not, I'm just assuming it is because I've never had headaches in my life. If you have, is there any way to make this stop, and does it go away over time? I am seeing my doctor on Tuesday but I thought I'd get some opinions here... You guys can relate better than any doctor.

Thanks!
Posted 3/9/2009 12:25 AM (GMT 0)
Hi I never took that med but hope someone will be along to help have you read the side effects to see if that is listed? lol gail
Posted 3/9/2009 12:48 AM (GMT 0)
I did read the side effects, but it says mild headaches are common and OK, but severe ones mean you need to stop taking it and seek medical attention. Because of this, I'm kind of confused as to what to classify my headache as... When it's severe, it only lasts for 30 seconds or so at a time, then I have the mild headache constantly. I'm not sure why it's happening when I stand up though, my first thought was something blood pressure related but as far as I know, my blood pressure is fine.
Posted 3/9/2009 1:55 AM (GMT 0)
Hi,
Yes I have gotten pretty bad headaches, actually migraines while on Pentasa. What I discovered however is that my headaches were made even worse while I was on entocort and Pentasa together. When I am on Pentasa alone I have chronic mild headaches. I just take Tylenol when I feel that they are becoming unbearable and possibly turning into a migraine. I just put up with them because the benefits I receive from the Pentasa out-weigh the occasional migraine.
Posted 3/9/2009 2:04 AM (GMT 0)
Ahh! I'm starting Entocort on Tuesday, I hope my headaches don't get any worse. They seem to be completely located on the right side of my head, worse than any headache I've ever experienced but not a migraine. It's getting frustrating though, it's been a week that this has been happening constantly.
Posted 3/9/2009 2:44 AM (GMT 0)

Hi,

I take 4, 250mg tablets four times per day and I hardly ever get headaches.  I really never got them before I started the med and now I don't see myself getting them any more than I use to.  Pentasa has been wonderful for me.  At first, I thought it was doing nothing, but now when I look back at pictures of myself a year ago I can really see a difference in my appearance.  I'm definately looking better and feeling a ton better.  My co-workers have even noticed the difference.  However, what works for one person is not necessarily what will work with another.  Good luck with everything.

Posted 3/9/2009 2:47 AM (GMT 0)
My doctor recommended that I take 4 pills twice a day as it's easier to remember and incorporate into a routine..Maybe the fact that I take such a high dose at once has something to do with it. Thanks!
Posted 3/9/2009 8:50 PM (GMT 0)
I'm getting more weird side effects now...For the past 2-3 days I've had this pain in my left shoulder (just above my collarbone) that's been getting gradually more severe. On top of that, my 2 toes beside my big toe on my left foot have become so stiff that it hurts to walk. I'm not sure what's going on, I just find this all very bizarre because I've never had any kind of similar problems before. Has anyone experienced this? I'm kind of worried right now.
Posted 3/9/2009 9:21 PM (GMT 0)
Is this the only change you have made? No other change in medication or diet at all? Can you get/borrow something to check your blood pressure at home while sitting and then just after standing to see if it is a blood pressure issue? I had issues that I thought were blood pressure related (not from pentasa) and I borrowed a blood pressure cuff to keep track of my pressure for a few days to monitor it. But with toes involved now, I might be thinking about calling the doctor, or stopping the pentasa for a few days to see what happens. I have found that doctors are not as helpful on side effects as good old fashioned detective work. Most of the time when I think I am having a reaction to a medication, if I ask my doctor, I get a "gee, I don't think that could be the reason". But if I do the elimination on my own, then I usually have my answer. OR, check with the pharmacist, they seem to have much more info than doctors on what side effects could be too.

I hope you figure it out and the headaches don't get much worse.
Posted 3/9/2009 9:49 PM (GMT 0)
Thanks Zanne! I already been watching my blood pressure for the past couple of days :) My blood pressure is usually right around 120/80, I've taken it several times. When I stand, it goes down to about 100/80. My heart rate seems high to me though, it's around 115 resting and 140 after standing up from resting. Yes, the Pentasa is the only change that I've made - I'm not taking any other medications and my diet is pretty much the same as before I got sick..eating less, but more than I was before I was put on meds. It seems like there must be something going on with it, I am going to the doctor tomorrow so I'm definitely going to mention it and see how she reacts.. If it gets any more out of hand though and she doesn't react to it, I'm going to have to go get a second opinion because it's getting really annoying. Today my shoulder pain was really the worst part though, it's sort of like a stabbing type of pain. Strange how all of these symptoms came out of nowhere though after 2 weeks on Pentasa...
Posted 3/11/2009 8:55 PM (GMT 0)
This is really crazy, I stopped taking Pentasa 2 days ago and started Entocort today (my doctor told me to stop taking it and ran a bunch of heart and kidney tests yesterday when she saw me, seemed very concerned). My heart rate has dropped back down to a normal rate, my blood pressure has dropped slightly and the headaches and pains have all disappeared. It's amazing how much it affected me after being on it for less than a month, I didn't even realize the change in my heart rate was due to Pentasa. My resting rate was sitting at around 130 at times, which was very worrisome. Glad I caught it before I had any more bad side effects, it's scary what a "mild" drug can do to your body.
Posted 3/12/2009 1:59 AM (GMT 0)
Valerie - that is so crazy - I have the SAME shoulder pain that just came on today. It's awful! I'm on Pentasa as well (1000 mg, 4 X a day) - I've been on it about a month now. I've noticed some improvement stomach-wise, but I have also noticed an increase in random pain - foot/ankle, knee, back. I wonder if it's related. I see my GI next week (and get results of a capsule endoscopy), but I will definitely question if it's a Pentasa thing. How weird...I guess it really is trial and error with this disease, isn't it?

Posted 3/12/2009 2:14 AM (GMT 0)
That sounds almost exactly like what happened to me, I was also getting pains in my arms a bit and I was getting foot cramps before my toe problems. Make sure to mention it to your doctor, I'm not sure how serious it is as I haven't gotten my test results back but you really don't want to mess around with it. Also, what is your heart rate at? Mine nearly doubled on the Pentasa. I wonder if you have that problem as well? If you do, make sure your doctor runs some tests and be firm about it :/ My doctor ran a bunch of blood tests on my heart and kidneys, and I was looking it up and it looks like it could be some kind of possible kidney problems. Keep me posted!
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