Me and azathioprine//politics of second opinions

[planetjen]

me and azathioprine//politics of second opinions

it's new meds day and i'm really nervous.

lialda - 2.4 mg
azathioprine 100mg

eek! on top of celexa and loestrin, both of which i have been on forever. i had been on asacol 2400 mg and it did nada. i probably missed some doses but took enough that it should have had some effect.

i am extremely apprehensive about the aza. i did not want to go on it. Doc did not really give me an option - he says "that is where you are at", because i've just had fistula surgery. he says fistulas will just keep forming. he is opposed to continuing use of steriods and antibiotics, and i like him because he cusses and is very straightforward and conservative w pharmies. but i am thinking about getting a second opinion and wondering about the etiquette of that?! and expense...i have ok insurance. they have denied some advanced tests the doc wanted to do but paid for my scope and barium x-ray thing.

so i took them today, i had labs yesterday and will have them again in 2 weeks, so i feel moderately ok about trying them. if i feel one lick of one side effect, i can always stop. i had no pill nausea today, just the usual lunch nausea, which is cool. i'm making my first real effort in a long time to change my lifestyle and not cheat on diet restrictions...

whew! i get all wound up on new meds day. thanks for listening :redface:

 

[katiesue1506]

Most people tolerate the aza just fine. It takes about 3 months to start working anyhow. I'm on a **** ton of it right now compared to my weight (200mg) and I'm also on weekly Humira shots. Its always wise to consult another doctor, especially if you feel uncomfortable with yours. From what you typed briefly about your history, it doesn't seem that he is doing anything unconventional. Most docs will skip the aza and put you straight on Remicade or Humira for fistulas. I think his approach is actually quite modest. But you have to do what you're comfortable with.

 

[planetjen]

remicade isn't covered by my insurance so that one's out of the question. so if aza has no effect i will need to consider humira. thanks for your response. im so mad right now....i just finished a course of antibiotics to get my flare under control and it helped for a few days but this morning has been awful. no blood but pain and cramps and D and more pain. pondering whether to go to the clinic to ask for some pred to get some relief. i didnt ask the GI for any on thurs because i felt pretty good that day. gotta love a saturday flareup. i suppose i could just deal with it and stay in bed and not eat but i have a small child who needs me.

thanks for your response katiesue....just getting this stuff outta my head makes me feel less crazy.

jen

 

[kenny]

I was pretty concerned in the beginning as well. But I think Aza is a great drug for most people and I feel very comfortable taking it at this point. I am also on it for the fistula thing and it has made a big difference for me. I was suffering from pretty bad allergies and arthritic pains which is also immune related. So for me Aza has been one pill that put it all in balance for me. My overall health has improved greatly.

 

[planetjen]

thanks kenny. yeah, i am feeling better about it. i have been fortunate so far in that i have had no major hospitalizations or major surgeries yet. i keep thinking, if the aza works and i can stick to my diet and improve my lifestyle then i could be potentially avoid so many serious complications down the road.
my husband is very apprehensive about aza, but it's hard to make someone who has a perfectly functioning immune system understand that mine just ain't right.
i would be psyched if it had a positive effect on my allergies. i get ferocious seasonal allergies.

i guess another part of it is that going on the aza means admitting that i dont have the disease under control and that is hard to admit....can't just pretend it will go away or magically heal on its own.

im also near brain meltdown from trying to research diet and supplement choices....i want to take a probiotic and a digestive enzyme but man alive is it hard to figure out what to take, where to buy it, is it reputable, ect...

 

[MapleLeafGirl]

I'm on aza as well and I remember being scared at first, but I have had no problems. I have not been getting sick any more than usual and my allergies do seem to be better, though I don't know if that is just the type of season we are having or the aza.

I hear you on the brain meltdown about supplements, etc. I asked my doctor about probiotics and he said there is good research out there but what is hard is trying to figure out which probiotic works for which person as we are all different. He couldn't really recommend one over another because of that but told me to feel free to experiment. Right now I am just starting small and taking vitamin D. We will see where to go from there.

 

[bierhere]

I did Azathioprine for a couple of years, but have been very anti with this drug. I'm just concerned with the side affects of immune system being surpressed more than the drug itself. I was on it when I got my two bowel obstructions. Since then, I've done 6 years of Remicade and I've done 2.5 years of Humira with a lot of success. My doctor has at times asked me to do the Azathiprine with the Humira/Remicade and so far I've refused. I know the latest research suggests that I should be taking it, but I'm hopeful that the Humira will continue to work.

 

[Crohn's 35]

Welcome bierhere. Thanks for sharing your information on your medications. I hope you can join us by telling us your full story on YOUR STORY thread of your own. Glad you are here, welcome aboard.:thumleft:

 

[bobby.parker]

I had a bad reaction to Aza, pancreatitis! Yikes, I went to the GP and he said I had a bit of wind, and indigestion...And gave me gaviscon. My mum took me straight to A&E and turns out it was a very dangerous form of pancreatitis, I stopped aza, and it dissapeared over night.

Even my doctor said he was so shocked that I got such a rare side effect!

 

[Silvermoon]

Hey planetjen!

Wondering how things are working out for you with the new meds!

I agree with Katiesue...absolutely nothing wrong with consulting with other doctors for their advise.... as a matter of fact, my specialist does it all the time. It sounds like you have a pretty awesome doc though...tells it like it is and no b.s.

Hope things are going well!

 

[planetjen]

hi silver i am feeling great this week! have only completed 14 days of 100 mg aza so i can't imagine it is working that quickly - however, except for one strange day of feeling terribly feverish and hung over (and hadnt had a drop of booze) have been feeling good. no adverse effects thus far. going to have labs again tomorrow or thursday.

still investigating seeing another specialist - i do like my doc's attitude but wish he would educate me more - e.g. instead of just "your labs are good" actually explain what was being looked at and looked for. i bought some books and am nerding out on the science aspects of the disease so I want more detailed information.

i was taking most of my meds at night and switched to taking all my 1 x day meds in the morning, perhaps this helps. im trying really hard not to be super dumb about what i eat- and the fistula surgery is healing up - now less owchy and more itchy itchy. maybe....just maybe....i'll get remission for my birthday!

 

[Silvermoon]

Awesome Jen!! I hope things keep going so well for you!!

And awesome on taking an interest in doing some research into the more "clinical" side of the disease! Try not to get bogged down too much by all the info, but it does give you an idea at least of what to look and watch for.... WOOT! for you!!

MOSTLY with the aza we like to monitor liver and pancreatic enzymes, as these two organs seem to get hit hardest and first IF there are interactions with the med. Most people handle it just fine...but once in awhile...

If you need some help trying to "decifer" what you read, let me know (via PM or here...either works) and I will try to explain it in "layman" terms if you wish...lol.

Glad to hear things are going well!

PS. I hear ya on the itchy side of things... I haven't had surgery yet, but when my "sores" stop draining so much and kind of sort of heal up a bit...OMG...I could scratch my skin off! Haven't found anything to help this yet...but if I do, I'll let you know!! lol!

 

[planetjen]

thank you for looking after me miss moon.....i will pm you when i am not in such a pred fog....i have lots of questions about the material i have been reading....been pretty sick these last two weeks. now on 40 mg pred taper in addition to lialda and aza and flagyl. tried lomotil had the most disgusting reaction, vomiting, vertigo, evem w a half dose. i told them it would happen....same thing happens when i take immodium. and none of my docs will give me any pain meds although my butt is ragged to bleeding pretty much from the constant d. on vacation till mon.....hoping to stay very quiet....pretty done with medical advice but dubious about self treatment (went down that road in college for weight loss...ended up w gall stones...not sure if related but still.)
how much calcuim to take to make up for the effect of the pred?
also im going to do a probiotic to bounce back from the flagyl.....have hopes for that.
thanks for listening, and hope everyone is well or at least better than yesterday.

jen

 

[violetcreams]

I'm on aza but can't get off the steroids without symptoms escalating again.