Mental Status Changes (Accompanying Increase Dose)

[Entchen]

Hi all!

I haven't been on the forum in the past few days as the page is very unstable when I log on using my desktop -- flickering and the page refreshing every 1/2 second or so. How bizarre!

Speaking of bizarre, I was advised this morning by my pharmacist to immediately stop 200 mg Imuran (prescribed earlier this month) and reduce to the 150 mg that I've been on since last December. That's good, because I'd already come to the same conclusion.

Although we can't say with certainty that Imuran is the cause, I have been experiencing significant, frightening, mental status changes that began a couple of days after I increased the dose. I have been unable to take the 200 mg for more than 2, maybe 3, days at a time because of these symptoms. My mother is concerned that I might lose my job or burn down my condo...and I agree -- that's how bad it's been!

About 6-8 hours after taking 200 mg (split dose, 100 in a.m. and 100 in p.m.), I start feeling like I'm in a fog. Thinking seems to require extra work. I'm forgetful. I'm confused. I have experiences of feeling like I've "just woken up" after being in a dream or perhaps not fully conscious for a time.

Also lightheaded.

If I go off Imuran for 24 hours or so, I get better (although I haven't taken any today and I have to confess that I still feel a bit off).

A few examples are below. Individually, no big deal. When you consider these are just the "highlights" from the past 5 days...it's concerning. And these are only the mistakes that I didn't catch in time and that I remembered long enough to record (recall that I've had memory problems lol):
- Showed up for a lecture without my PowerPoints. First time in 7 years.
- Showed up for another class without materials for students.
- Showed up at work with shirt inside out.
- I was on Facebook typing "concert starts in 90 minutes!" and failed to connect that I was supposed to have LEFT for said concert 15 minutes prioe. I still had soaking wet hair and was wearing pyjamas.
- Once I did get to the concert (on time thanks to a dear friend and a car), I stood in line with a friend as he purchased his ticket. Two or three minutes later: "Peter! Did you buy your ticket?" (His jaw dropped.)

I shared the concert example with my pharmacist, who knows me, and she got quite concerned. She has advised me to call my doctor (I've left a message). She also plans to call and check on me a couple of days from now -- that's how concerned she is. Lovely.

And now I shall blow a strawberry :strawberry: at this. I developed 2 fistulas while on 150 mg Imuran and my GI agrees that it's not enough.

Maybe I can combine it with something else -- to avoid a biologic?
Or maybe I can finally start dropping the steroid etc. weight (which hasn't budged in months) and get to a point where 150 mg will suffice?

 

[Jessi]

Wow! This is scary! Maybe a new drug would benefit you? Have you tried Asacol or Asacol HD? Since your CD is in your TI and colon, it would probably be a good drug for you. *shrug*

Also, I know you mentioned that you want to avoid biologics, but Remicade has been wonderful for me and has been known to heal fistulas for many many people. Please don't get mad at me for mentioning it. And please don't burn down the forum.

Hang in there, sweetie! I hope you and doc find a good plan for you. I want you to be well. :hug:

 

[Crohn's 35]

Hey Entchen, I know you may not agree with this because I was NOT going to be on an antidepressant but since I have my Crohn's flares are way down. I told my Doc NO out of body or feeling out of sort type. He agreed and I am on Pristiq, it is new and very very mild. My doctor is not a pill pusher but he agreed to this right off the bat. Check it out, it cant hurt. http://www.pristiq.com/ been on it a year now. My husband thanks me lol.

 

[ChefShazzy]

Wow, K, that is some pretty scary stuff. I don't have fistulas, but from what I seem to read around here is that biologics are the best for healing them. Is there particular reason you want to avoid them, or are you just freaked out by them? I was too, and put off trying for Humira for a year while I got sicker and sicker. I've been in remission for over a year now. Are you going to see your doctor soon to rule out the possibility of some other reason for the mental symptoms?

 

[Entchen]

Hi all:

Thanks for your replies.

Because I have stopped and started the medication several times now, I can say with some confidence that the memory loss and foggy sensation is most likely stemming from the medication, and my pharmacist agrees. No such problems today, for example, after taking a "day off" of Imuran yesterday.

That said, something like a severe Vitamin B-12 deficiency could theoretically cause the same problem. I've run through what is happening and at least informally ruled out a lot of other potential causes, but you (a collective "you") are correct in suggesting that there could be other causes. Too quick an onset for dementia (and I'm 32!), no depression present (not even 1 of the 5 out of 9 symptoms required for diagnosis), just had liver function tested last week, etc.

Re. biologics -- A few things. are behind my firm stance against going that route unless absolutely necessary. I had initially whined about those reasons in this post but will leave it as: my GI does not believe that I am ready for biologics and I would like to agree. I have concerns about keeping a job (my first two jobs ended when the school/research group closed down and my current contracts run out next September with my full-time job ending in April). Adding "I need to miss 1/2 day every 6-8 weeks for a hospital appt." feels like a bit much to handle right now (although I'll do it if I HAVE to!).

Again, I do appreciate the support. Having a good day and much less foggy still.

 

[Entchen]

And please don't burn down the forum.

Jessi as long as there are no ovens or fireplaces or flat irons around the forum, we should be good to go! Also, I did try not to use those things several hours after taking the 200 mg, just in case.

And I'd never be mad about ideas or suggestions -- they're welcome! Remi looms large, you might say, and that is frustrating to me, but it's a personal battle and not one I'll take out on you!

 

[Entchen]

Hi again: My GI's secretary is out of town and he is only taking calls in case of emergency. I can reach him by going through my family doctor, if needed, but unless an emergency comes up I will wait until around the 17th to call and ask about discussing what to do next.

I am starting to perceive his wanting to take things slow (not over-medicate) as almost a passivity and suspect that his idea for a next step will be ... no next step at all. I hope this is a misinterpretation on my part coming from frustration at not yet being well (which is my gut's fault, not that of my GI!).

Any ideas of non-Remicade / Humira additions to 150 mg Imuran to help lessen symptoms? My GI at this point will almost certainly not even permit discussion of biologics (even though he'd said we would have exactly that conversation if I developed a second fistula, which took only 5 months to happen). And I know from experience that he won't consider adding on other medications unless I make specific suggestions about those meds. Ideas welcome!

And in the meantime what I reported to him about my general Crohn's health gradually getting worse continues. Stomach pain is creeping back (ever so slowly, but I am getting concerned). There's mucous again...eek! And although it could have been spagetti sauce, I suspect there was blood today along with the mucous.

 

[Grumbletum]

Oh no, sorry to hear this Entchen. I'm no expert, but going by my experience, and with your fistula history, there might be no avoiding Remi or Humira. Unless they switch you from the Aza to 6mp or one of the others of that ilk and it does the trick.
I was lucky and had an enterovesical fistula heal ( was on Pred, Aza and antibiotics) just as I was on the verge of surgery. But they advised me to go on Remi because I still had severe inflammation which wasn't budging.
It scared me too, especially to be moving up the med ladder so quickly, but the Remi has given me the first real relief from symptoms since this all kicked off.