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I Want Off Of Azathioprine!!

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Posted 11/17/2007 6:59 PM (GMT -7)
I need some advice about getting off of azathioprine.  I have been taking 100 mg for 2 weeks.  Felt just fine when the dr. put me on it and knew deep down that I shouldn't take it.  He wants me to go to 200 mg. in 2 more days, but I'm not going to.  Am thinking about dropping down to 50 mg.  Any thoughts or suggestions!!!  I have found safer & more natural ways of keeping my flars under control and want to be DRUG FREE!
Posted 11/17/2007 7:34 PM (GMT -7)
Hi Jenni, it might help if you told us your history with medications, what you're symptoms are now and what other methods you have or would like to try. With this we might be able to offer more suggestions. And welcome to Healingwell :)
Posted 11/17/2007 8:46 PM (GMT -7)
Hi!  Thanks for the suggestion!  Guess you can tell that I am new!

My history with UC is rather short, but full of too many meds in my opinion.  Suppose not nearly as many as some, so I guess I shouldn't complain.

Has my first sign of colitis almost 3 years ago.  Was given enemas and some meds (can't remember now what they were).  I also started drinking mangosteen juice at the time and with all of it my symptoms went away.  I was mainly having bloody stools.  No pain and no loose stools.  Then this past March, I started having bloody stools again (very slight).  But going into April things got much worse (loose stools, pain, fever, weight loss, fatigue, ect.).  I was in the hospital by the end of April. 

While in there I was given steriods through the IV and asacol.  Can't remember now how much.  My regualr dr. tried to taper me off of the steroid in about a month and by the end of that month all symptoms were back and I was back in the hopital for a weekend stay.

I then went to see a GI dr.  He switched me from Asacol to Lialda (4 tabs a day) and put me back on prednisone.  40 mg per day for 1 month then I tapered by 5 mg. every 2 weeks until I got to 20 mg.  I then tapered by 2.5 mg every 2 weeks.  By the time I got to 10 mg, I was so tired of being swollen up the GI dr. let me taper by 2.5 mg every week.

By the time I got down to 2.5 mg. I was starting to have another flare.  He had me start taking 10 mg of prednisone again and I was scheduled for another colonoscopy with 2 weeks of that.  Was getting NO relief from the increase in prednisone.

I had the scope done and it showed that the entier large colon was inflammed.  I was having A LOT of pain, loose stool, weight loss again, & bloody stools. 

A couple of days after the scope I decided that I DID NOT like the sound of the 3 options that he said I had which were, take azathioprine the rest of my life, have surgery, or try another med that is so expensive our insurance would probably drop us.  I started drinking the mangosteen juice every day again.  Within 2 days I could tell a difference and that my symptoms were improving.  Within 3 weeks I was once again symptom free. 

I went back to see my GI dr. about 10 days after the scope.  And by this time I was feeling REALLY good.  At that time I was still taking 10 mg of prednisone and 4 Lialda tablets a day, which I still don't feel that the combo of those did anything for me.  He asked me how I was doing and I told him that I felt great.  He asked me what I was taking and I told him about the juice.  Of course since it wasn't some prescription med, he laughed it off and told me that I still had to take the azathioprine.

Well stupid me, even though I have still been feeling great, I started taking the new med 2 weeks ago (100mg).  I got myself off of the prednisone even though he didn't tell me too.  He wants me to start taking 200 mg of the azathioprine starting this coming Monday, but I'm going to stay at 100mg if not go down to 50mg.

I know that not everyone feels comfortable with trying natural remedies, but after reading what all azathioprine can and will do to a person, I am willing to try the natural or alternative stuff.  And I guess for me, it is working so far with the juice I take (which I would HIGHLY recommend)!!!

So I want to get off of the azathioprine before I get too far into it.  Any suggestions would be greatly appreciated.

My stats for right now

UC of the entire large colon

 

100 mg  -  azathioprine

4 tabs  -  Lialda

 

Alternatives

3-6 oz mangosteen juice a day

probiotic tabs before each meal

 

Posted 11/18/2007 5:29 AM (GMT -7)
I'm glad that Mangosteen juice is helping you. But just to warn you, we have had numerous spammers on here claiming the cure all properties of this juice (very over zealously too!) so some here may be a bit leery of your testimony. Our community is highly protective of it's members so please don't take any offense. But if it's working then good for you! :)

Usually if you stop the AZA, there is no taper. You just stop it. It seems that you haven't had much time for it to accumulate in your body yet. But I don't recommend stopping any medication until you have consulted with your doctor. If you are having an improvement from the juice after flaring so bad, then the doctor can't refute that right?
Posted 11/18/2007 9:24 AM (GMT -7)
I'm confused though. If you're better why does he want to up your dose of AZA? And I (and most here) had to have a test to see what the right dose of AZA would be. Did you have that test? Going from 100 to 200 seems like a really big jump!
I definately wouldn't up your dose if you feel better. Maybe not quit what you have, but I wouldn't up it.
Posted 11/18/2007 10:03 AM (GMT -7)
Yes, I thought that it was a bit insane that I even needed to start it at a time that I was doing so well. 

When I was so sick in April with all of this, they went ahead and did a test to see if my body had the right enzymes in it to metabolize AZA.  That came back that I would be able to tolerate AZA.  They never talked about the test to tell what amount I would need. 

I think that going from 100 to 200 is way too much and unnecessary at this time.  Yes, I am for sure not going to increase it, but still want to know what to expect if I start to taper off of it.  My GI dr. told me that NO ONE with UC has ever gone off of it and I don't believe that for one second.

Jenni

Posted 11/18/2007 12:56 PM (GMT -7)
That's not true b/c my doc puts people on it when they start remicade for 8-9 months and they come off it. Maybe it's b/c they're still on the remicade that it's ok (they don't flare afterwards either). Now, whether people who are on aza alone can come off and not eventually flare is another story.
Posted 11/18/2007 1:14 PM (GMT -7)
(Spam hammer out and willing to use it) Isn't it funny how they try to sound like they are suffering from our same disease then WHAM presto chango within 1-2 of trying X product they feel cured. If I had a nickle for every..... Another red flag

Post Edited By Moderator (MMMNAVY) : 11/19/2007 9:25:13 PM (GMT-7)

Posted 11/18/2007 3:17 PM (GMT -7)
14. No SHOUTING. Remember, using ALL CAPITAL LETTERS in posts is considered yelling and rude, plus it is difficult to read.

Post Edited By Moderator (MMMNAVY) : 11/19/2007 9:12:46 PM (GMT-7)

Posted 11/18/2007 3:30 PM (GMT -7)
Jenni-If you go on AZ you may not have to be on it for life. My doc said that some only need to be on it for a couple of years and can go off of it for a while (until the next flare), or never again. But he also said that some need to be on it much longer (life). He prefers the AZ over pred use because the side effects on the whole body seem to be less. I was on it for 2.5 years, recently went off it because I want to try to have a baby. It has been almost three months and so far so good. No blood or really any symptoms. I'm still on Asacal as well as probiotics, fish oil and a good dose of ginger for when I'm nauseas, and I maintain a good diet. I do yoga. The combination seems to work well for me. But i would certainly not stop my drugs. It is the combination that has kept me healthy.

Another thing to consider- it sounds like when you started using the mangosteen juice you were on other medications. So is it the drugs that helped or the juice? Or is it a combination of all of them?

I understand wanting to be drug-free but sometimes the drugs are better than not being on them for overall health. I avoid drugs as much as possible but when it comes to UC I don't mess around. When I got sick I was terrified of the drugs. I had never taken any medications, I mean I didn't even take sudafed. I'd take the occasional antibiotic but that was about it. But I had also never been that sick before, nor had I konw anyone so sick before. So I made the choice to trust the doc (along with a lot of research). And I think the drugs in combination with the other things I use really help and outweigh the possible long term side effects.

We do live in a society where there seems to be a drug for everything and I don't' think that is good. But in that mess there are certainly drugs that are necessary and beneficial. Would you not take a medication to remove a blood clot in your lung? Would you not take chemo for cancer? Those drugs are definitely beneficial but can have terrible side effects. In my opinion some of the drugs for UC are necessary as well. It is really about deciding what will give you a better quality of life and what will help you to live a better or longer life. For me the drugs I have taken for UC have helped me become normal again. It doesn't have to be an all or nothing, either or kind of thing. Just my opinion but something else to consider. I'll get off my soapbox.

Oh, but one more thing. It sounds like you and your doc don't do too well together. Maybe you need to change to another one. Health care is a personal thing and it is important to have a good relationship with your doc. It may take some searching but I guarantee if you have a doctor that respects you and that you respect you will do much better. I am very lucky to have a doc that respects that I think yoga helps me. Many wouldn't.

NOw I"m really off my soapbox. :)
Posted 11/18/2007 3:39 PM (GMT -7)
MILDEWVAL

Thanks SOOOOO much for the kind words and helpful tips.  It sounds as if you and I think along the same line.  I have never been one to take a lot of meds either and hate the idea of being on something that might cause another problem that would mean more medication.

While you were on AZA, did you have problems with getting sick since it attacks the immune system?  I think that is my biggest worry.  I work with a preschool class and have it in my head that I will get sick with every little thing that comes through the school.  My husband tells me that I need to stop worrying about all of it so much and I know that, but it is SOOOO hard.

Thanks again for the support.  It is exactly what I need in this stage of the game!  Jenni :-)

Posted 11/18/2007 4:19 PM (GMT -7)
JenniD-

I didn't really notice getting sick more often. And really compared to the couple of years before I started taking it I think I got sick less. I think that was because the UC was battering my body so badly that my immune system was shot anyway with all the bleeding and such. After starting it I did get flu shot and still do that. My doc said it would be a good idea. And I didn't get the flu even when my husband did.

I also think that, once I started the AZ I actually paid more attention to washing my hands and eating well. I started carrying around Purell with me everywhere. I am a recruiter and people like to shake your hands so it came in handy.

It is really kind of a wait and see situation though. Everyone is different. I think some people do get sick more often.
Posted 11/18/2007 4:50 PM (GMT -7)
Azathiprine and Prednisone should have entirely different uses, in my opinion. Prednisone produces a quick improvement and Aza a gradual one for the people they help. People taking Aza may have bad side effects with chronic use. Those taking Pred for extended periods will have bad effects, ranging from cataracts to osteoporosis and fractures to avascular necrosis with unbelievable joint pain to diabetes to a lot of other unpleasant choices.

Steroids have their place in UC therapy, but that isn't for long-term use in most cases. I'm sort of a walking, talking illustration of that after one surgery on my leg and two on my shoulder for steroid-induced problems. A small percentage of people who take Aza develop liver problems or cancer, but most do fine. It's a roll of the dice, and we each just have to figure out what our best bet is.

Posted 11/18/2007 4:55 PM (GMT -7)
Jenni, I'd recommend you check out Jini Patel Thompson's Listen to Your Gut to learn more about non-pharmaceutical treatment options. My personal opinion is drugs have their place - particularly in emergency situations to help get bad flares under control - but I think it's also up to each of us to learn about dietary changes, lifestyle changes and natural supplements that can support our healing and help us reduce our dependency on drugs. And everyone responds differently to different approaches. If something's working for you, don't let the naysayers get you down.

http://www.crohnsalternative.com/
Posted 11/18/2007 8:39 PM (GMT -7)
You know Horus, I took the vitamin e enemas (non-MLM) and the SCD diet and I was about 50% better in 24 hours and totally well in 3 days. So I know it does happen. I am skeptical of things that do in a few days that are MLM, but hey, just b/c it's MLM doesn't mean it doesn't work. Some of those "miracle juices" have aloe juice which lots of people take and say helps. And I was just at Sam's and they do sell it, so it's not totally MLM.
I was also better within 24 hours of taking Asacol (before it stopped working completely), so I don't buy that all this stuff takes months to start working. They told me Lialda would take at least 6w and it's practically the same thing as Asacol.

I heard a LOT of horror stories about pred from people who were on it a fair amount of time while they were trying to convince me remi was the way to go. After all those stories, I was sold that it was better. I wasn't sold on the aza, but it was a shorter time period. However, I had "chatted" with a ton of people who haven't had problems with it, so I'm not too scared. Of course, I apparently am a freak of nature b/c everyone else seems to get nauseous or vomit, be tired, headaches, etc, that you would normally get from a nasty drug. Even the pharmacist looked at me with pitiful eyes when he was telling me how sick I'd get. I've been on it a week now and haven't noticed anything but an increase in energy for whatever reason. The only nausea I've had could very well be my active sinuses and has been really mild. And between that and the remi (4w on remi now), I haven't been sick yet, YET, so maybe it's not so bad. I hate hate hate drugs and I fought a good fight, but after 6 months of not being able to hold my baby, I'd had enough. Once I get well I'll figure out the next step, but I'm tired of missing their lives. Now I'm still sick, but well enough during the day to go on. Unfortunately, though full of nervous energy I guess b/c I'm buzzing everywhere, I'm so tired b/c I'm up all night in the bathroom. about 3 am every night I have to go sit for 45min-1hr waiting for everything to move on out...in addition to the 6-7 other times I get up to go smaller amounts.
Ugh.
Posted 11/19/2007 4:33 PM (GMT -7)
hey, i think i was only on 75 mg of aza and came to the conclusion that it was doing nothing for me. i don't weigh much because of this condition, but 200 seems kinda crazy to me. maybe consult another doctor. good luck.
Posted 11/19/2007 7:35 PM (GMT -7)
I've had this condition too long and tried everything and been there done that twice and went around the world doing it. One response to it could be placebo and that your body craved liquids because you were dehydrated. Here's a clip you should read.


http://chetday.com/mangosteen.htm

http://www.wisegeek.com/what-is-mangosteen-juice.htm











JenniD said...

HOW DARE YOU SAY THAT I AM A SPAMMER!!!! I WAS BARELY ABLE TO GET INTO THE HOSPITAL ON MY SON'S BIRTHDAY BECAUSE OF THIS "@@#$&%#$" DISEASE! I ABSOLUTELY KNOW about ULCERATIVE COLITIS AND AM STILL TRYING TO GET IT IN MY HEAD THAT I WILL ALWAYS HAVE IT IN ME AND CAN'T DO A darn THING about IT! I'M NOT ON HERE TO FOOL OR TRICK SOMEONE. I JUST WANT TO SHARE MY EXPERIENCE AND HOPEFULLY PICK UP SOME HELPFUL TIPS FROM THOSE WHO ARE WILLING TO GIVE IT. YOU CAN THINK WHAT YOU WANT about MANGOSTEEN JUICE, BUT ALL I KNOW IS THAT I "SUDDENLY" STARTED FEELING BETTER.....................WHATEVER! [img]/community/emoticons/mad.gif[/img]

Post Edited By Moderator (MMMNAVY) : 11/19/2007 9:26:57 PM (GMT-7)

Posted 11/19/2007 9:02 PM (GMT -7)
Horus.....mind yourself! We are here all here for support.

Jenni, welcome to Healingwell. You've gotten a lot of good feedback, and I can tell you that I've been on Remicade and Az for over two years. I too think that I haven't been as sick as I was before -- maybe because I'm more cautious like Val is? Not sure. As for the Mangosteen juice, I do hope it works well for you, but I've actually witnessed several people (myself included) buy the stuff only hoping for relief from their ailments. We so easily get spammers on this site, and not just for Mangosteen, but for other alternative meds too and that's why a few are a bit passionate about this subject. We just don't want people to fall prey. But each of us needs to do what feels right, and that's most important. We appreciate you sharing your remedies and asking questions...that's what this forum is all about! So again, welcome to HW!

Posted 11/19/2007 9:24 PM (GMT -7)
Horus and Jenni, both of you have had your posts edited for rude behavior and content. Please chill, both of you, no offense meant just trying to keep things cool and peaceful here.

Jenni, This is an incredible inflamitory arguement that many of us have had a tremedous amount of pain about because one gets tired of the snake oil salespeople. If this works for you then great and thanks for sharing, but realize that you are proding an infected wound and my suggestion would be to humbly present as such.

I also think what none of us are saying is that this drug-free route sounds interesting and is usually the hallmark to the begining of the disease to try this route, but is not the most best option for everyone, so it kind of makes people who do have to be on drugs such as AZA feel like the drug-free people are talking down. Seriously don't we all want off drugs? We want to be healthy....

Just trying to give perspective.
Posted 11/21/2007 11:55 AM (GMT -7)
JennyD,

In case you didn't bother to read the links I posted about mangosteen juice I thought I'd point out some interesting points it made.

"The mangosteen phenomenon is a reprise of the aloe vera, gingko biloba, and especially the noni juice story, complete with exaggerated claims for the health benefits of an exotic fruit. It should come as no surprise that both the President and the Chief Financial Officer of Xango once worked for Morinda (now called Tahitian Noni International)."

"According to Dr. Ronald Prior of the US Department of Agriculture Research Service at Tufts University, Boston, Massachusetts, "a significant increase in antioxidants of 15 to 20 percent is possible by increasing consumption of fruits and vegetables, particularly those high in ORAC value." However, in order to have a significant impact on plasma and tissue antioxidant capacity one can only meaningfully increase one's daily intake by 3,000 to 5,000 ORAC units. Any greater amount is probably redundant. That is because the antioxidant capacity of the blood is tightly regulated, says Dr. Prior. Thus there is an upper limit to the benefit that can be derived from antioxidants. Taking in 25,000 ORAC units at one time (as reputedly occurs with mangosteen) would be no more beneficial than taking in a fifth of that amount: the excess is simply excreted by the kidneys.

Marketers of the drink have widely claimed that XanGo has exceptional health-giving properties based on its very high ORAC score. (ORAC stands for oxygen radical absorbance capacity - a measure of the antioxidant value of a substance.) But having a high ORAC value does not necessarily confer any health advantage."


Buyer beware.
Posted 11/18/2012 7:35 AM (GMT -7)
I was recently diagnosed with low-moderate case of Chron's combined with debilitating sacroiliitis I went through a course of deflazacort with azathioprine as prescribed by my doctor. I tapered off the deflazacort over a period of eight weeks but relapsed within a week of ceasing the deflazacort.

My doctor then prescribed Infliximab which I declined due to the prohibitively high cost (A year’s salary just to get relief for yr).

After doing some preliminary research I stumbled upon this article. http://www.ncbi.nlm.nih.gov/pubmed/11215357

With nothing to lose I started taking "Boswellia / Indian Frankincense". A fairly common Ayurvedic remedy prescribed for centuries by Indian Ayurvedic practitioners. With no know side effects I tried it.

I am currently experimenting with dosage but with 5 capsules a day (3-1-1) of "Shallaki" made by the "The Himalaya Drug Company" http://www.himalayahealthcare.com/products/shallaki.htm

I am glad to share I am nearly symptom free. Barring the occasional spinal pain due to my negligence in taking the medication on time I am a very satisfied.

It seems takes about a week for the Boswellia to build up. I initially started with two capsules and did not get any relief. Then I wrote to the company who clarified that the Boswellic acid in Shallaki is 75mg per capsule. When I increased my dosage to 5 capsules a day (3-1-1) it did the trick.

I truly understand the despair and desperation of somebody suffering from these IBS diseases and hope this helps you. turn
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