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experience with azathioprine

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Posted 9/22/2013 3:12 AM (GMT 0)
Hi everyone, I haven't posted in a while but I'm hoping to get some feedback on my situation.

I was on Azathioprine from January to July of this year (100 mg). I continued to have bloody diarrhea and urgency throughout plus I felt so sick...no energy, headache, nausea etc. At my July app't with my GI, he wanted to up my dose to 150 and I mentioned that I had hoped to have a trial off of it because I was so uncomfortable taking this drug and I felt so sick. GI agreed with rolling eyes. At my August app't, I was experiencing more urgency and at random times throughout the day but I was having an occasional solid BM with no blood. Doctor wanted me back on Aza. I was so stressed and disappointed.

Within a couple of days starting back on, I went from 12 -15 BMs up to 26. Don't know what the deal was, but it forced me to cancel a needed 4 day break. On the third day after restarting Aza, both my ankles started to swell up and HURT! I called my pharmacist who suggested I get in touch with my doc. I called my GI, told them the symptoms and the best they can do is see me Sept 25 as opposed to OCT 2. Couldn't get into my regular doctor so I went to a same day clinic. This doc sent me for an ultrasound to check for blood clots(negative) and next is Xrays to look for arthritis.

When I look up adverse effects to Azathioprine, some websites say that swollen feet or ankles is a side effect that requires you to inform your doctor of right away and some don't say anything at all about ankles. The doc I saw at the walk in didn't see this side effect in his 'drug book'.

By the way, I was in the hospital when I started Aza back in January, and my ankles swelled up then but we chalked it up to being in bed and pumped up with IV fluid. I've had a problem with swollen ankles since (but never thought a lot about it) I wasn't paying attention to my ankles for that month I was off of Aza. Also I'm back down to 10 -12 BMs/day

What is a reliable source to find out about drugs? Have any of you had this happen.

My mom has rheumatoid arthritis and I am so hoping that I haven't acquired yet another uncurable auto immune condition.

This disease if FREAKIN CRAPPY! I'm so frustrated!!
Posted 9/22/2013 3:41 AM (GMT 0)
I'm sorry. Your GI sounds like mine. I felt so bad on Aza I quit it on my own after three weeks. Zofran didn't work for nausea. Then I tried 6MP with low expectations. I'm able to tolerate it, but it's been a rocky road. A few times I've had problems with my ankles swelling, but not very often. I think my issue was related to diet. I was eating a ton on celery at the time. Been on 6MP for one year now.

My Dad also has RA which attacked his lungs and caused lung damage. His Rheumatoid factor is super high and they are expecting it to attack his joints any day now. I recently had my Rheumatoid factor checked and it's normal range.

Aza is actually one of the drugs they use to keep RA under control, so I think you are covered. If you had RA. You probably already know this...but if it can be caught early and controlled w/ meds deformity or damage can hopefully be prevented.
Posted 9/22/2013 12:53 PM (GMT 0)
I'm confused as to whether you were actually in a total remisison with the AZ? Seems like a lot to go through for a total remission and definitely too much to go through if you weren't even in a complete remission. Sounds like it is time for a different gameplan.
Posted 9/22/2013 1:43 PM (GMT 0)
No. Never in remission. That's why I wanted off. Just sick and tired all the time. I'd have the odd day with just 6 or 8 BMs and most of the time the BMs were confined to a four hour window in the morning but never remission

I'll mention I'm in Canada in a small city. There aren't other GIs to go to. My family doctor (when I do see him) seems frustrated at the lack of alternatives too.

What is the next drug after azathioprine to try?
Posted 9/22/2013 1:52 PM (GMT 0)
ive been on azathioprine for a little over a year.... I went on it with prednisone as a "bridge" and then tapered the pred. I haven't had any bad side effects from the aza, ive had some improvement and no more than a few weeks here or ther that felt like remission.... but if I went through what you went through I don't think I would wnt ot stay on aa either.  as far as your dr rolling his eyes, say to him or her, " how long am I supposed to take a drug that is making me WORSE?"

I believe next is remicade or humria.  do you use rectal meds? honestly if I didn't take rowasa a few times a week I think I would have no improvement at all....

Posted 9/22/2013 3:57 PM (GMT 0)
I would try 6MP before going on to Remicade. It's the same drug as Aza but already broken down. Aza gets metabolized to 6MP. I was able to tolerate it much better. We are complaining about our side effects now, but I think the possibilities are much greater going to Remicade.
Posted 9/22/2013 4:04 PM (GMT 0)
I always wondered why they do the AZ at all. Why don't they all just do the 6MP?
Posted 9/22/2013 10:31 PM (GMT 0)
I'm in Scotland and at my clinic they try people on aza first and then 6MP if needed - not sure why but that is always the way they do it.

I have to say aza has been great for me - I started it with a 9 week course of pred about 6 months ago, got off the pred no problem and have been in a full remission ever since - no issues at all. My poops are amazing, the other day I did one you could have hit a home run with!

I also do everything I can to keep myself as healthy as possible - green smoothies, royal jelly, bee pollen, lots of exercise - swimming, weights, yoga. I'm actually contemplating a normal life for a while - its a bit of a strange feeling!
Posted 9/23/2013 12:03 AM (GMT 0)
I tried Aza and was soooo sick on it. !! Within 1 hour I was vomiting profusely. GI said take it at bedtime to "sleep thru" the side effects but didn't work either. I would actually wake up to vomit. Weaned off this and onto weekly Methotrexate injection. Its an immunosuppressant drug and although I don't get everything that comes around, I do find that it takes me longer to get over illness when I do get sick.
Posted 9/23/2013 12:14 AM (GMT 0)
Thanks for the replies.

I did the Aza in tandem with prednisone from Jan to June. I had a heck of a time getting off prednisone, and now in hindsight, I was doing better on pred, as in I felt good and had energy, but never actually stopped bleeding.

I tried rectal meds last fall. It may have been too little too late. I was getting more and more sick last fall until I ended up in the hospital. I managed to hold a few in all night, but those too made me nauseated+++

I will definitely ask about 6MP.

Jonny, it sounds like the drug worked amazingly for you. That's awesome. I try very hard to keep healthy too, but you need energy to exercise. I force myself to ride my bike for a half hour every day to exercise my dog. Walking is too taxing on my body. I'm interested in your green smoothies. How do you do those? I don't seem to be able to get enough veggies in.
Posted 9/23/2013 11:38 AM (GMT 0)
green smoothies are normally 50/50 fruit and dark leafy greens + some water, blended up in a high speed blender.

Dark leafy greens are the most nutritious foods on the planet so idea is that you break them down in a high speed blender which makes them far easier to digest and this provides superior nutrition.

There is plenty of info and recipes online. For a good book on the subject try 'Green for Life' by victoria boutenko
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