I'm starting to think aza is just causing problems.

[Zebediah]

This is my first post, so forgive me if I violate some unspoken rule...

Brief bit of relevant history: I've been on azathioprine for a little bit more than a year (I have also been on infliximab, budesonide, and mesalamine as maintenance meds). I take 150mg a day, and it is currently the only maintenance medication that I take for my Crohn's, which mainly hangs out in my stomach and duodenum.

I stopped taking most of the medication that I have been given because I feel as though they were not helpful and/or were only exacerbating my symptoms, or just creating new problems. My gastroenterologist wants me to stay on azathioprine because, from what I understand, he fears the possibility of stricturing.

I have discovered through mostly accidental trial that azathioprine seems to cause me very unpleasant symptoms after I eat. I mean, one would except as much with Crohn's, but these are different, and it's not just when I take the actual pills--it's every time I consume something. I feel faint, dizzy, and extremely anxious. For months and months, I thought this was a manifestation of Crohn's, but I recently had a prolonged period where I did not take azathioprine and I can't really recall having these symptoms--and now that I am taking it again, I am experiencing them again.

Additionally, I have in the past been diagnosed with "toxaemia", as I was told, as a result of azathioprine--around this time, I had a ever-so-slightly elevated bilirubin count, so I am assuming my liver was having trouble processing the drug effectively and it was just accumulating in my bloodstream. I also had a bout with almost-pancreatitis last year, but it didn't get quite high enough to do any real damage--my pancreatic enzymes were at about 2x normal levels.

Essentially, my question is whether my seemingly azathioprine-related symptoms that occur after and during eating are a normal effect of the drug, or if I should be concerned about how it is affecting my organs or something. I have looked around, but the closest thing I can find is that aza apparently causes upset stomach and nausea, and this isn't really the case for me. It makes me not want to eat, which I already don't really do unless I'm on some sort of narcotic, which I only get on rare occasions and only because I have very severe issues with kidney stones. (Discovering that they made it possible to eat was incidental.)

I am also not really sure what else I can take if azathioprine is making me worse. Mesalamine did nothing, and infliximab gave me horrible headaches that never ended and I was eternally laden with infectious diseases. I was on budesonide briefly (never pred)--but steroids are not for long term use. I really don't even want to be on meds, as they really have not provided me with any relief, but I guess surgery doesn't sound appealing either if I end up with a stricture. Ugh.

tl;dr: Is azathioprine eating me from the inside? Has anyone else had similar symptoms with this drug? Am I imagining this correlation (very possible)?

 

[rollinstone]

Hey buddy, sorry to hear your not doing well, iv been on Aza now for almost a month and feeling pretty good, I think you should express your concerns with your GI and ask for other options, maybe 6mp? Did you get tested for TMPT before going on Aza? Maybe you should look into LDN? Hope you feel better soon

 

[Jennifer]

Hi Zebediah and welcome to the forum!

May I ask when you last had blood work done and how often you have it done? Its very possible that Aza may not be the best medication for you but blood work should tell if the medication is too toxic for you. Also have you had your vitamin levels tested recently? Being low or deficient in certain ones can bring on symptoms of dizziness, fatigue, depression etc. Check out the forum wiki on Vitamin and Mineral Deficiencies.

Your current side effects from Aza are listed (even though it doesn't specifically say "after eating"): http://www.mayoclinic.com/health/drug-information/DR601561/DSECTION=side-effects What has your GI said about your current symptoms? There are other medications out there that you could try such as Humira, Cimzia, Methotrexate, Enteral nutrition, Low Dose Naltrexone (LDN) etc. http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=treatments-and-drugs

I understand their desire to keep you on a maintenance medication but as you know full well not every med works for everyone and for some people certain ones may do more harm than good. I believe that there is a treatment out there for everyone even if it combines medication with diet etc. Aza may not be the right medication for you so its worth discussing other treatment options with your GI. If you feel that they aren't willing to listen then get a second opinion.

I've never taken Aza but I did take 6MP for 15+ years which is very similar to Aza. I had to stop taking it because it was starting to affect my liver. Luckily no permanent damage was done. Since then I've been on Humira and now I'm on Remicade. I'm in remission but it seems so hard to find a proper maintenance medication after using something that worked so well in the past. I didn't suggest 6MP for you because in the forum wiki under Aza it states, "Those who are unable to tolerate Azathioprine due to nausea, vomiting, diarrhea or headaches may do better with 6-MP (60%) but those who experience hepatoxicity or pancreatitis on Azathioprine will likely not." I'm not saying don't try it, just be careful.

Keep us posted on how you're doing.

 

[Zebediah]

Did you get tested for TMPT before going on Aza?

I had the TMPT test done, yes.

May I ask when you last had blood work done and how often you have it done? Its very possible that Aza may not be the best medication for you but blood work should tell if the medication is too toxic for you. Also have you had your vitamin levels tested recently? Being low or deficient in certain ones can bring on symptoms of dizziness, fatigue, depression etc. Check out the forum wiki on Vitamin and Mineral Deficiencies.

I am not sure of the last time I had bloodwork specifically for the aza, but I have had it done every couple of months or so since starting it, and one time I was "at high risk for toxaemia"--but so many other things were being put into my body due to hospitals and whatnot that I really just had no idea what was going on anymore or if it was specifically due to the aza or not. I have regular bloodwork done very frequently as I am in and out of hospitals and offices for related and unrelated issues--but usually kidney stones or associated pyelonephritis--somewhat regularly; the results generally do not show hepatic or pancreatic elevations, and those two incidents were both separate from each other and seemingly isolated.

My bloodwork has shown for a while that I am a bit anaemic, and I have had an issue with chronic hypokalaemia for months now that we can't seem to fix. I have been taking potassium chloride pills @ 20MEQ, extended release, three times a day, and I still had a potassium deficiency last time they checked. I was quite surprised, as I was in the ER and they came in to give me potassium pills when I'd already taken 60MEQs that day... but either way, both the anaemia and hypokalaemia were preceded by the issues with aza, but I suppose could be a reflection of what it's doing to my body.

What has your GI said about your current symptoms? There are other medications out there that you could try such as Humira, Cimzia, Methotrexate, Enteral nutrition, Low Dose Naltrexone (LDN) etc.

I have not brought this specific concern up to him yet. The last time I saw him was in late January or early February, which is when I stopped Remicade and mesalamine. I thought mesalamine was causing the symptoms, actually, but I guess not. I really have not wanted to try Humira due to the fact that Remicade had me sick constantly--I seriously could not catch a break. I caught every infection I knew I was exposed to and then some. I caught strep three times in two months, and it wreaked so much havoc on my tonsils that I have to get them removed... so, yeah.

As for those other meds, I presume he will give me those options. He is a very good doctor, and he does listen. He is always quick to do things when I am very sick. I just don't see him often enough, and that's more my fault.

They told me when I was diagnosed that Crohn's in the upper GI tract is generally more aggressive and thus requires a more aggressive treatment. And you know, I would be fine with feeling awful after I eat due to a maintenance drug--but the constant pain makes me unable to be okay with it. The inflammatory markers have shown improvement, but I feel worse. I lost about twenty-five pounds from November to January.

I think if I could get something for the pain, I would stop complaining, because that's really the main issue, but pain medication is so inaccessible that I kind of search for other things to complain about instead. Unfortunately, the pain clinic that my GI doctor's office is associated with doesn't accept my supplementary insurance, so they won't accept me, even though they accept my primary insurance. We are looking for alternatives, but it's an issue. My GI does not prescribe maintenance narcotics, and obviously NSAIDs are out of the question, and I'm very allergic to tramadol--so my options as far as pain management are pretty limited.

I should, perhaps, mention that there is a possibility that there is something wrong with my thyroid. I am going to get it tested again in a few days, so hopefully that will shed some light on things and make my life easier if it turns out to be a thing. I want to go back to my GI about all of this, but I'm going to the other side of the country for three weeks starting next Wednesday, so I really doubt that's going to happen before then... sigh. I'm not sure how much I care about suppressing my crazy immune system if it means I have to feel worse. Quality over quantity, y'know?

There is the concern that azathioprine has nothing to do with these symptoms and that the correlation was coincidence or related to my possible stupid thyroid or whatever. I'm just kind of ready to give up on medication at this point, which I know isn't the best approach, but I'm starting to not even care.

 

[Jennifer]

My bloodwork has shown for a while that I am a bit anaemic, and I have had an issue with chronic hypokalaemia for months now that we can't seem to fix. I have been taking potassium chloride pills @ 20MEQ, extended release, three times a day, and I still had a potassium deficiency last time they checked. I was quite surprised, as I was in the ER and they came in to give me potassium pills when I'd already taken 60MEQs that day... but either way, both the anaemia and hypokalaemia were preceded by the issues with aza, but I suppose could be a reflection of what it's doing to my body.

When's the last time you had your Magnesium levels tested? "As magnesium is required for processing of potassium, low potassium levels even after supplementation may be due to magnesium deficiency." http://www.crohnsforum.com/wiki/Vitamin-and-Mineral-Deficiencies

I really have not wanted to try Humira due to the fact that Remicade had me sick constantly--I seriously could not catch a break. I caught every infection I knew I was exposed to and then some. I caught strep three times in two months, and it wreaked so much havoc on my tonsils that I have to get them removed... so, yeah.

I stopped taking Humira because I kept getting upper respiratory infections over and over (I only took it for 3 months). I had been getting strep multiple times a year well before I started taking Humira and a doctor suggested that I get my tonsils removed because they were likely just a breeding ground for bacteria and for some people they do need to be removed because that bacteria can cause recurring infections. When I was on Humira, these infections became constant. I waited to start Remicade until my tonsils were removed (finally had another doctor take me seriously, referred me to an ENT and I got them removed). I was told it was possible I might still get sick from the Remicade. I've had 3 infusions so far with no infections.

My Rheumatologist doesn't agree but in my opinion since my tonsils had been making me sick for years I do believe they allowed me to be more at risk for infections while on any medication that drastically lowered my immune system. Since you've had yours removed as well you may not deal with the same issue again.

I think if I could get something for the pain, I would stop complaining, because that's really the main issue, but pain medication is so inaccessible that I kind of search for other things to complain about instead. Unfortunately, the pain clinic that my GI doctor's office is associated with doesn't accept my supplementary insurance, so they won't accept me, even though they accept my primary insurance. We are looking for alternatives, but it's an issue. My GI does not prescribe maintenance narcotics, and obviously NSAIDs are out of the question, and I'm very allergic to tramadol--so my options as far as pain management are pretty limited.

My GI doesn't prescribe pain medication either so I see my general practitioner for pain management (rather than actually going to a pain management clinic). I take Tylenol 3 for joint pain. Tramadol made me throw up the day after taking it.

I should, perhaps, mention that there is a possibility that there is something wrong with my thyroid. I am going to get it tested again in a few days, so hopefully that will shed some light on things and make my life easier if it turns out to be a thing.

Keep us posted. I know mine's been checked many times but is always fine. I do hope yours is fine too as you don't need anymore health issues.

I'm just kind of ready to give up on medication at this point, which I know isn't the best approach, but I'm starting to not even care.

I understand that completely. I think we've all been there yet I'm not interested in another surgery so for me "quality" includes some sort of treatment. I hope you find something that works for you.