Scared of Medication. Don't know what to do.

This is kind of a long story but i'll try to shorten it. about 3 weeks ago I was unable to get my Asacol HD medication. I have been on Asacol since I was 17 (I am 26) and thank goodness I always did well on it. I starrted out with the 400MG tablets and took those for years. Then a few years ago did the switch to Asacol HD and did well on that.

Well finally it happened. I was living out of state and didn't have a new doctor yet so as I was running out I brought my pills to the pharmacy fully expecting my refill within a day or 2 tops. Well 2 days went by and no word from the doc. So I call them and they explain to me how the doctor usually doesn't ship pills from out of state and they'd have to see if it was a controlled substance and so on and so forth. So I called them darn near everyday and went to the pharmacy everyday. Only to be told that it was in the system but the doctor hadn't had time to look yet. Finally 9 days go by and something happened. My heart rate skyrocketed and I felt dizzy and my chest felt tight. I was so terrified I felt like I couldn't breathe. Went to the ER and they told me it sounded like an Anxiety attack. The ER doctor was also kind enough to write me a script for my asacol.

Now here's where it gets weird. I started taking my asacol HD immediately just like I would take it at home and I noticed my symtoms were not going away. I still had chest tightness and I felt a bit dizzy and my heart rate would randomy spike and I couldn't eat because when I ate I felt sick. I went back to the ER so many time only for them to tell me it was an anxiety disorder. They did lung x-rays and even did a CT scan of my head. They did crap ton of blood work and supposedly even did some thyroid testing and everything always came out perfect.

Finally one day I just didn't take my asacol and while I was still having anxiety I noticed I didn't feel as dizzy anymore and I stopped having so many palpitations. I didn't take it for a few days and took a bus and then a plane back home to be with my family and to see my own doctors and get healthy. While I was travelling I took one Asacol pill and later that night about 6 hours later I felt a little dizzy and my heart rate spiked again but I eventually calmed myself down.

I have now not taken the Asacol HD in about 5 days. The problem though is I am still kind of flaring with weird bowel movements but very little blood. I am so scared and I do have a GI doctor i should be seeing soon. My primary put it a referral for me 2 days ago and i've been calling the office daily ever since trying to talk to someone and not a recording because I don't want to wait for them to call me. I want in ASAP. y primary Doctor gave me a bunch of samples of 500MG Pentasa because I told him I was too scared to take the 800mg of Asacol since I think i'm reacting to it. He said that Pentasa is exactly the same thing but it's just a lower dose but I still haven't taken it.

I'm just so scared of the side effects but I also want my stomach to heal as well. I would rather start with a much lower dose like a 250...I don't care what it costs I will pay it. But I would be more comfortable taking a lower dose first just to see how I react to it. He wrote me a script for 800MG of regular Asacol not the HD but I told him I do not want 800 of anything. I'd rather get the 400mg Asacol if possible. I know I should take my medication but i'm terrified of having side effects. Would it be okay for me to ask for a smaller dose of medication for my own peace of mind? I never had troubles with medication until I was off it for so long and then started getting anxiety attacks.

I am seeing another primary doctor on monday in the morning for a female issue and i was thinking of bringing it up then. I just need advice.....I always used to tolerate Asacol so well that i'm scared to take Pentasa but I don't want 800MG of asacol. Do they make ANY lower doses of it? Does Anybody know?

Assuming you are in the US, no, they do not make 400 mg Asacol anymore. But, Delzicol is a 400 mg Asacol pill stuck inside of a capsule, so they could prescribe that. There really isn't much difference between a 400 mg pill and the 500 mg Pentasa. Personally, I think Pentasa is much better than Asacol. I believe Pentasa actually also comes in 250 mg pills but your doc probably doesn't have samples of those so he would have to write you a prescription. I also believe you had an anxiety attack and if you don't get back on meds soon our UC will get worse very fast.

I already have a lot of samples of 500mg Pentasa. But i'm scared to take it cause of side effects i've read i'd feel safer taking the 250mg maybe. If it's similar to Asacol.

Harley said...
I already have a lot of samples of 500mg Pentasa. But i'm scared to take it cause of side effects i've read i'd feel safer taking the 250mg maybe. If it's similar to Asacol.

5ASAs are essentially the most harmless drugs ever created. They are only a topical anti-inflammatory, have a bioavailability of 20-30% tops and a half life of 5 hours. Advil, tylenol etc are more dangerous than 5ASAs by a long shot.

Your issue is almost 100% psychological and you should definitely be seeing a doctor about anxiety. As others have mentioned, you MIGHT be intolerant, but that is usually associated with a worsening of UC symptoms as well

Marauder93 said...

Harley said...
I already have a lot of samples of 500mg Pentasa. But i'm scared to take it cause of side effects i've read i'd feel safer taking the 250mg maybe. If it's similar to Asacol.

5ASAs are essentially the most harmless drugs ever created. They are only a topical anti-inflammatory, have a bioavailability of 20-30% tops and a half life of 5 hours. Advil, tylenol etc are more dangerous than 5ASAs by a long shot.

Your issue is almost 100% psychological and you should definitely be seeing a doctor about anxiety. As others have mentioned, you MIGHT be intolerant, but that is usually associated with a worsening of UC symptoms as well

So they only stay in your body for 5 hours??? (unless you continuously take them?)

notsosicklygirl said...
800MG isn't enough to provide any benefit to your condition. it seems pointless to spend a bunch of money to take a dose that isn't going to do anything. 400mg is even less. 2400mg is for maintenance and 4800mg for flaring. You might have an intolerance if you're having dizziness. It can come on after you previously did okay on the medication.

Pentasa releases further up and isn't used so much for UC.

I'm just so scared to take it again to find out if i'm intolerant. That's why I was hoping for a lower dose of Asacol just to test it out. I only took one 800MG pill and unless it was all in my head I felt a bit different within 5 minutes of taking it. Then about 6 hours later I was in a hotel room and I felt dizzy and my heart rate spiked and I felt a bit nauseous the next day for a little while until I took a Dramamine.


The meds worked so perfectly on me and until I was off them for so long I had no side effects. I keep hoping it's all in my head and just a coincidence but i'm too scared to take the pill again. I just feel like if i weaned myself back onti it with a smaller dose i'd be okay....

Harley said...
I'm just so scared to take it again to find out if i'm intolerant. That's why I was hoping for a lower dose of Asacol just to test it out. I only took one 800MG pill and unless it was all in my head I felt a bit different within 5 minutes of taking it. Then about 6 hours later I was in a hotel room and I felt dizzy and my heart rate spiked and I felt a bit nauseous the next day for a little while until I took a Dramamine.

None of those are symptoms of mesalazine intolerance, but they are symptoms of extreme anxiety. Also, if you were intolerant to mesalazine, it'd have been there from the beginning - you wouldn't just suddenly develop it after 9 years. I'm talking as somebody who could not tolerate the stuff from day one.

You need to really believe that this really is all just one giant, ongoing panic attack and that there is nothing physically wrong with you (other than the UC). You can learn to cope with the anxiety if you recognise it for what it is. I think you need a sympathetic expert to talk to; a therapist would be a good place to start. This is something you need to sort out for your future health. Not taking the mesalamine for a while is unlikely to do you any real harm. What I'm trying to say is, it's better if you can start taking the mesalamine again straight away, but don't have a panic attack about that if you can't.

There are anti-aniety RX meds that also help UC. Do a search on this forum for them and maybe you'll feel better head-wise and gut-wise by trying it.

I always trust own instincts when it comes to symptoms and it is impossible for us to know whether it is anxiety or intolerance to meds that is causing your symptoms. It could be a different manufacturer of meds that has some ingredient or coating that is causing your new problems. You said you moved and your RX is coming from a new pharmacy, just an idea.

"Also, if you were intolerant to mesalazine, it'd have been there from the beginning - you wouldn't just suddenly develop it after 9 years."

That's not always necessary the case. I was on mesalamines for nearly 15 years before I became intolerant of most of them - seems my body doesn't mind Apriso tho.

To the OP, I recommend you listen to the fine people of this forum. I also think it might anxiety related. If you see a doc, ask them for an anti anxiety med. not only will it help ease your mind but it can also have a calming effect on your gut. It won't treat UC but it will lessen the stress you are facing.

I've noticed that there are few individuals on this forum that seem to be able to predict the future. I'm not quite sure exactly how they do it, but it must take a special person indeed to accomplish that.

The truth is, no one knows what tomorrow will bring. If you continue to stay off your meds, there is a chance that you may get worse. Or you may not. I certainly wouldn't advise anyone to go off there meds unless there is good reason.

As far a saying you can't become intolerant to something because you've been doing it for x years is ridiculous. You'd think folks on this forum would know that better than anyone. Our body's obviously change, and most usually not in a good way. It is quite possible that you have become intolerant to mesalamine.

garylouisville said...
The pills have enteric coatings on them so they dissolve in the intestines and not in the stomach. They could not possibly effect you in five minutes so, it is in your head. I don't really know what it is you want from us if you're not going to listen to us anyway. You didn't listen to the medical professionals either.

I'm truly sorry I'm not trying to upset anyone. It's just a scary situation and not many people seem to have good advice about UC medication. They all kept telling me just to see a gastro and i'm trying too but the soonest they have appointments is December. I can get a colonoscopy sooner than that because the last person who performed mine was a general surgeon and i'm seeing him tuesday to talk. But I don't feel like he'd know a lot about medicines. My GP has Chrons Disease so he is a bit more understanding and gave me the Pentasa to try but didn't seem to understand my fear of the dosage. He was trying to save me money but I really wanted a smaller dose. He said they they supposedly still make the 400MG Asacol because he saw it on his screen but I thought that wasn't possible anymore?

I'm just trying to figure out what my options are for getting a lower dose to make myself more comfortable taking it and I know many people here are very informed on it.

NCOT, no I was on mesalamines for about 15 years when my body decided it didn't like them anymore. I never had the side effects like the OP, but my symptoms definitely became worse as the years went on. My first clue was the severe bloody and painful D after doing Rowasa.