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Pentasa and anxiety

L

Lucinda

New here but I have a question. Found your site when doing research so I'm hoping someone might know something about this.

I am currently taking Pentasa. I took it for several years and then went off it for a while. I've been back on for just under 3 months and I'm having terrible anxiety. A couple weeks into the anxiety, I realized the only other time I had strong anxiety I was also on Pentasa. Back then my life was pretty stressful so I thought that was the cause of the anxiety. I now realize the anxiety went away completely after I stopped the Pentasa.

Anxiety is not listed as a side effect and my GI says I should be looking to other causes but I really think it's the Pentasa. I have found a little information that indicates it has been reported as a rare side effect which would explain why my doctor wouldn't know about it.

Am I crazy or has anyone else experienced this? Thanks in advance.
 
Cross-stitch gal

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Well...I don't know about anxiety. But, I do know that I have a hard time getting those big pills down. Plus, it does seem like I'm hungary all the time. I wonder if the pentasa and the prednisone are working together to make that happen though. I'm hoping that you found what you were looking for.
 
ThatsWhatSheSaid

ThatsWhatSheSaid

I have never seen anxiety listed as a side effect but the first panic attack I had was shortly after starting the Pentasa and I now have full blown panic disorder.

It's a long story, and I have some of it on other threads, but I have had all of my tests come back negative recently and am starting to wonder if all of my issues could be from the pentasa. The doctor I got a second opinion from, at Mayo Clinic questioned if I should stay on it.

I will be going off but not quite sure if I need to wean or what.
 
L

Lucinda

That's where I am. I never had anxiety attacks until I started the medication. Now I have days where it's all I can do to keep it under control. I do have a lot of other stress in my life right now so it's easy to write it off to the other stuff. But I've had other times in my life where I had tremendous stress and no anxiety like this. Thanks for the response. I go to see my doctor tomorrow.
 
ThatsWhatSheSaid

ThatsWhatSheSaid

Will you let me know what you do? And what he says and what works? I feel so lost right now.

So you have anxiety attacks too? That's weird and could totally be an easy coincidence... With all of the people taking pentasa some are bound to have anxiety issues. What have you read and where?

I am feeling very comfortable in my decision to go off of it.
 
J

JDTM

OMG LDN BBQ
When I was first diagnosed, I was put on Pentasa and budesonide, and I freaked out pretty hard for a while. I initially thought it was the budesonide, but came to the conclusion that it wasn't and was able to handle it better later on. I stayed on the Pentasa as well, and I'm still on it.

I wouldn't say I had full-blown panic attacks, but I certainly had many days in a row where I would get despondent or hysterically upset, sometimes uncontrollably so. That said, I'm hesitant to blame the Pentasa, as I was pretty tightly wound before my diagnosis.

Keep the timing in mind: I started Pentasa immediately after being diagnosed with Crohn's disease, and I started getting super upset afterwards. I was handed a diagnosis with a lot of uncertainty, and I think it completely set me off. Worry was almost constant for a long while.

This is not to say that Pentasa does not/could not have any sort of psychological side effects, but if it coincides with a diagnosis or the return of symptoms, then I would hypothesize that both of those things could also be triggers.
 
L

Lucinda

JTDM--I think you make some excellent points. For me I started Pentasa years after being diagnosed. I also have had some very stressful times, last summer for instance which involved being hospitalized twice and my husband have surgery, where I didn't have anxiety. I also wasn't on Pentasa at the time. I started the Pentasa again nearly a year after the hospitalizations.

I think most doctors are reluctant to attribute the anxiety to the Pentasa for two reasons. It isn't listed as a side effect and it is a pretty rare side effect. I suspect for people who have anxiety related to this medication, they are told it isn't the medication so they look for other reasons rather than pressing the issue. It's pretty easy to assume the anxiety is related to stress, etc.

I admit I can be tightly wound. I can make a mountain out of a molehill with the best of them. But I know the difference between a little worried and not able to communicate because I am so overwhelmed.

I did do some internet research. I know it can be sketchy at best and there wasn't a lot of hard data. As far as I could tell symptoms that were reported as side-effects were things that occurred in more than 1% of the population. Anxiety reports were not statistically significant so it wasn't listed as a side-effect. In post-market reporting, anxiety has been reported in .95% of reports. Still rare and less than 1% so probably not considered enough to be significant. That doesn't mean it doesn't occur. Just not enough to be listed. Again, I wonder how many people have been told it isn't Pentasa when it might be.

So we will see how it goes with my doctor. He may not believe me but that doesn't mean I won't still bug him about it. I have noticed that if I am good about my B vitamins, it seems to get better. So I am wondering if Pentasa is depleting my B's and that is the problem. It may not be causing it directly but rather indirectly. Like I said, I will bounce ideas off of him tomorrow.
 
Patricia56

Patricia56

Location
Northern California, USA
You are not crazy. Your symptoms appear to fit Salicylate Toxicity Clinical Presentation:

http://emedicine.medscape.com/article/1009987-clinical

quote:

The chronic ingestion of salicylates may produce the appearance of anxiety with its associated tachypnea, diaphoresis, difficulty concentrating, and hallucinations; agitated delirium also may be observed. Elderly individuals may present with deterioration in functional status or with concerns of pneumonia, owing to the presence of tachypnea and fever.

Patients with underlying psychiatric illness may present with symptoms suggestive of an exacerbation of their underlying psychiatric illness (eg, mania, psychosis).

Among the symptoms of Salicylate Toxicity are:

GI tract effects
Nausea and vomiting are the most common toxic effects. This can be caused by CNS toxicity or by direct damage to the gastric mucosa. Salicylates can disrupt the mucosal barrier and occasionally cause GI bleeding. Pylorospasm, decreased GI tract motility, and bezoar formation can occur with large doses. These slow elimination and cause greater amounts of salicylates to be absorbed from the GI tract.

I would go back to your doctor with this information. If they decline to consider this as a possible explanation then I would consult a psychiatrist who is certainly more likely to take you seriously.

And if it were me, I would not take another dose of Pentasa and I would refuse all further treatment with 5-ASA medications. You may want to review information on salicylates in foods as some foods are very high in this. I don't know but it seems reasonable to think that they may be contributing to your symptoms.

Best wishes,

Patricia
 
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ThatsWhatSheSaid

ThatsWhatSheSaid

JDTM, I think there is a lot of legitimacy to what you're saying. And for me, being entirely honest, I might just be a person who has panic disorder either way. The time that lapsed between my first attack and onset of the the disorder was 2-3 years. Who knows anymore? I only know that I don't know.

Patricia, thank you for your information.

I am definitely going off the pentasa; I stopped middle of the day yesterday and am doing cold turkey. I spoke to a pharmacist about it and she indicated there would not being any withdrawal symptoms so weaning would only be an issue with respect to the condition it is being used to treat. Ha! Since I am worried it is causing pretty much all of my symptoms, and possibly contributing to my anxiety on top of it, I think I will be okay.

And if not, then maybe I will have something the doctors can point to and go, Ahhhh that is what is causing the problem- you're having a crohns flare!

Until then, I am just some crazy girl with pain, nausea, sores, blood, severe fatigue and much much more. It's kind of like winning the lottery.
 
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L

Lucinda

Patricia,

I will ask him about the Salicylates. Although the reference to bezoar made me chuckle (if you've read Harry Potter, you will know why). I don't want to stop taking the Pentasa because it's working. I'm also taking Humira and the two combined are producing the best results I've had in 17 years. I just want to understand the underlying cause of the anxiety so we can deal with it.

Thanks for your input!
 
crohnicaly stinky

crohnicaly stinky

Lucinda, I'm on lialda, (different version of the same drug as pentasa) and humira. I have been getting bad anxiety attacks in the spring when the pollen is out, pollen was a trigger for my flares and again in the fall when the pollen is out. It's horrible because they come when I lay down and try to sleep, i feel like i'm going to not be able to pay the bills. Also I have been at my trade for 28 years, that is a lot of experience, but at these times I get scared I am not going to be able to finish a project. That's just bizarre to me. I'm starting to get them again now that the late summer/fall pollen is starting up. In the middle of the summer I'm fine though and in the winter also. These are recent and I don't remember them before I was taking Lialda.
 
L

Lucinda

I saw my doctor on Friday. He still does not believe it is the Pentasa but he also agreed it didn't really matter. I was concerned so it needed to be addressed. (The first doctor I've had who can disagree with me and still leave me feeling like I was listened to. I love it!)

Anyway, the plan is first to determine if the Pentasa is even working. So a small bowel study will happen next month when I return from vacation. If it isn't working, we switch meds, end of story.

If it is working, he suggested maybe switching to Lialda (which I've never taken) or adding a low dose anxiety med. It it isn't working, we try Entocort or something else. In his own words, "I don't want to pull out the big guns unless we know we need them."

Ironically, my period is due in a few days and this is the time of month when I start getting very anxious and I have been fine. Unfortunately, my tummy is acting up instead (which also frequently happens about this time. My period is definitely a trigger.)

It's a mystery that may never be solved but at least a plan is evolving. As long as I have a plan, I can handle it all.
 
crohnicaly stinky

crohnicaly stinky

Lialda is coated so it makes it through the small bowel and dissolves in the large intestine. Not sure about pentasa but both are the same drug, mesalamine (sp)
 
Z

ZM1019

Well my Pentasa just arrived so we shall see. My biggest worry is that with the dose I'm taking I'll have an anaphylactic reaction and just die in my office or in my bed. Not outside the realm of possibilities since I'm given to suddenly react to anything in big doses (including vitamins or supplements) and have a few quite dramatic reactions to meds.

I also worry about the side effects. I cannot be even a smidgen off my game at work so not being able to concentrate or being spacey will be deal breakers. There's only me and I have to keep my job. I also can't have even one panic attack or anxiety episode. Any of that would get me fired. I am not one to have anxiety or panic attacks and I deal in an extremely high stress environment on a daily basis. My usual mode is not to react at all then go away and think about it. So if I suddenly get anxiety or a panic attack, I will definitely know it's the Pentasa since nothing else is changing in my world and I found out about the Crohn's awhile ago.

I really do not like seeing that information about Salicyclate Toxicity. I've had medicine get toxic in my system before and cause hallucinations and yellowing of the skin. God knows what long term effects it had. I'm not going down that road again.

Anyway, we'll see. This was the least offensive of the meds and I'm already thinking it's a very bad idea. I'm just hoping I'm proven wrong.
 
nancerini

nancerini

I've had problems with anxiety when I've been on steroids for a long time, I am currently starting to notice that this is happening again and it is NOT fun. I would think it's the steroids and not the Pentasa. You can check on any side effect for any drug on this site www.medlineplus.org
 
ThatsWhatSheSaid

ThatsWhatSheSaid

ZM- how is the Pentasa going for you?

I have been off of it since August 3. I have not noticed any real significant changes yet, except slightly less D. I have not had any blood in stool either (which I had been having). Not going a million times a day makes me worry that I am constipated, because I've always gone a ton- my whole life. I am still going 2-3 times a day, but it is formed and firmer.
 
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Z

ZM1019

well I was on it for three days. it definitely made my inflammation go down, but it also started to give me pain and make my digestive system make noise like Alleve used to do. it seemed to clear up the constant constipation which maybe was from all the inflammation. Anyway, 3 days in my nose began to run like a faucet and I started to run a fever. I quit the Pentasa and drank Nyquil for two days while I missed work. Let's just say that the silence from my boss spoke volumes.

I had a very weird thing happen during that time. I swelled up more than ever to the point where it was hard to breathe and literally felt like it was squeezing my heart. That would happen within ten minutes and last for hours. it even lasted after I stopped the Nyquil. Very weird.

So I am trying again but if I start to hurt and make noises again, I am stopping. Alleve tore me up and caused all of this so I am not taking anything that does that again. I also can't get sick again. I need my job. Right now I am just thinking, all this for a flipping placebo that is probably causing more damage.
 
Dutch941

Dutch941

Location
Syracuse,NY
I have no knowledge on pentasa and anxiety connection....but I have immense experience with anxiety. My entire family ...parents..aunts.....siblings...all prone to anxiety...myself included. I STRONGLY recommend a book called "the way up from down". .....google it...it's fantastic and deals with anxiety and depression.....the author is a doctor who disagrees with treating this isssue with chemicals .......seriously...read this book! It is a must and has defeated my anxiety issues for 18 years now......my treatment? Turkey.....melatonin...l tryptophan.....,tyrosine...magnesium....knowledge. No Valium.....no Xanax.....no any other crazy meds. Anxiety can be awful...I know. The solution is much more simple than people think......good luck.
 
superzeeman

superzeeman

I have been on pentasa for 5 months and my life has changed for the better. With Cholestrmyine and that, I only have issues a couple times a month with diharrea. I do understand that it can cause anxiety but I am Bi-polar and Manic depression and have no anxiety that I know of. Have not noticed but I am medicated for the other things that I have, so it may jsut be counteracting it.
 
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