Re: Azothioprine

[Guest guest]

Hi Alyssa,

I posted a week or two ago about doctors wanting to put my son on this medicine.

I am still on the fence, and would also appreciate any experiences people have

had with this drug.

I have been doing research, mostly reading abstracts on pubmed. These are the

numbers I came up with for people with who have UC: about 29-53% who take this

medicine go into remission; about 13% would have gone into remission anyway (the

palcebo group); about 12% experience moderate side effects that get better when

they decrease the dose; about 12% have severe side effects (like dangerously low

white blood cell count, hepatitis, and pancreatitis) and have to stop taking the

medicine. I came up with these figures after reading about 15 different

studies.

So, best case senario, a person has a 50/50 chance of getting better with this

medicine, but they also have a 1/4 chance of having a bad reaction.

I don't know if this info helps you, but I thought I'd share what I've found out

so far.

Calypso

>

> (or however you spell it). Does anyone on here take it, or have taken

> it in the past? ly, I'm really scared to start taking it. I just

> feel like it's so foreign to my body that it could do anything to me

> and I'd have no control over it. So anyways, I'd appreciate any input/

> experiences you've had with this drug!

>

> Thanks!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

Alyssa,Unless you have some quirk, you should be o.k. I hope I am not worrying you. I just don't like the azathioprine/6MP because it suppresses the immune system, the very thing that needs to be made healthy. All the medications stop working in the end, even if they worked at first because all you are doing is making it possible to ignore all the damage that the bad bacteria and yeast are doing and eventually if your diet isn't good the body gets to the point where it can't ignore it anymore. At least you are doing it the best way possible by eating SCD to heal while the drugs are letting you respond a bit more 'normally.'After he started taking the azathioprine, I think it was around week 2 or 3, Sanjay started feeling like he had the flu. Super fatigued, and

ached all over, basically looked like death warmed over. It lasted about 1 week, and then he was fine. He was on it for about 2 months when the doctor called and ordered him to stop because his neutrofils were too low. It took him a while longer than expected to recover his neutrofils to a good level. Then he tried it again only on a half dose every day. He was on it for a few weeks and then reduced the dose to every 2 day or so. He was fine for a little while, as long as he stayed with SCD. But if he started to cheat (which the temptation is huge when you are on a medication that you think is doing something positive and you are feeling 'normal'), he would start to flare. I think with all the starts and stops (because his immune system was too suppressed) and going from azathiorprine to 6mp, he may have been on it 6 months before realizing it wasn't going to work becasue he couldn't get

stable. The doctor gave him a Rx for 10 mg tablets so that he could play around with the dosage easier, but he never tried it because he started doing better while waiting for his neutrofils to rise. Imagine that ; )AmeliaP.S. I don't mean to sound harsh regarding doctors. They can't help it. Their education has been really influenced by the big pharmacutical companies. The whole direction the education takes is more one of diagnosis and treat symptom. They get trained to focus on symptom-drug type thinking that they don't see the obvious -- that they are no longer aiming to heal, just do away with a symptom. In the process, they are treating the body in parts instead of looking at the whole thing and how all the parts influence and affect each other. Your doctor is mostly likely doing her very best to treat you in the best way she knows from her training. I just feel that there

is a huge flaw in the training.To: BTVC-SCD Sent: Wed, February 17, 2010 11:03:16 PMSubject: Azothioprine

(or however you spell it). Does anyone on here take it, or have taken

it in the past? ly, I'm really scared to start taking it. I just

feel like it's so foreign to my body that it could do anything to me

and I'd have no control over it. So anyways, I'd appreciate any input/

experiences you've had with this drug!

Thanks!

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

[Guest guest]

Hi Alyssa,

I think it's spelled azathioprine. One forum I've found to be helpful with

regard to all the drug therapies (and several of the SCDers on this list post

there, too) is the HealingWell forum.

Here is the link to the UC section: http://www.healingwell.com/community/?f=38

Of course, you can Google it and learn probably more than you want to know.

Hopefully you can give yourself a couple of days to do some research before

starting it. That's what I've done when I've tried new stuff and it makes me

feel better to know more before I start.

Hang in there!

Kathy

UC since 12/05

SCD since 7/07

bleeding caused by IV antibiotics 4/09

Currently stable on sulfasalazine and Canasa/cortifoam

> I'd appreciate any input/experiences you've had with this drug!

>

[Guest guest]

It's very individual on how you will react, like everything I guess ;-). Some

people do great on it. It sucked for me. A therapeutic dose (one that closed my

fistulas) made me feel like crap (nausea, fatigue). When I dropped it to a dose

that I could tolerate, my fistulas reopened. Eventually I dropped it altogether

and took humira instead, which my body liked much better.

Good luck! It may be just the drug to get you on track :-)

Holly

Crohn's

SCD 12/01/08

>

> (or however you spell it). Does anyone on here take it, or have taken

> it in the past? ly, I'm really scared to start taking it. I just

> feel like it's so foreign to my body that it could do anything to me

> and I'd have no control over it. So anyways, I'd appreciate any input/

> experiences you've had with this drug!

>

> Thanks!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

Alyssa-

I have been on Azathioprine for the past 3.5 years. I was 'remission' for 3 of

those years because of the drug, and I had a flare because I drank beer, which

has always been a huge trigger. I am pretty sure that, but for that night 3

months ago, I wouldn't be on this website at all.

My doc is considering increasing the dose since its not to the therapeutic

levels, but can't go too much because of liver toxicity. I am considering going

up despite the fact that my SCD has been helping me. But Azathioprine *might*

help me lead a 'normal' life, which I crave now.

I haven't had any problems with it -- I lead a normal life -- great time in

fact, traveled with my boyfriend, got a new job, moved to a new city. And my

previous doc in Berkeley and the one now in San both think it shouldn't

be a problem at all.

That's my experience.

Good luck.

-Andy.

[Guest guest]

P.S. I don't mean to sound harsh regarding doctors. They can't help it. Their education has been really influenced by the big pharmacutical companies. The whole direction the education takes is more one of diagnosis and treat symptom. They get trained to focus on symptom-drug type thinking that they don't see the obvious -- that they are no longer aiming to heal, just do away with a symptom. In the process, they are treating the body in parts instead of looking at the whole thing and how all the parts influence and affect each other. Your doctor is mostly likely doing her very best to treat you in the best way she knows from her training. I just feel that there is a huge flaw in the training.It's all good =) I totally and completely agree, with all my heart. It just stinks that I have to go on an immunosuppressant. That was one thing that has been on my "I will never do this in my lifetime" list since I was diagnosed. So I'm still in shock. I just hope I can get off it ASAP, and I hope it doesn't sabotage all the efforts I've been making to be healthy. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Hi Alyssa

I been on it for nearly 20 years for a kidney transplant and I hate it. I am on 75mg. It has wrecked my bones and skin. You never want to take something that supresses your immune system if you can help it. I know your parents are against low dose naltexone but if you were my daughter I would be trying low dose natrexone before I put you on azathioprine.

Sky

To: BTVC-SCD Sent: Thu, 18 February, 2010 9:03:16 AMSubject: Azothioprine

(or however you spell it). Does anyone on here take it, or have taken it in the past? ly, I'm really scared to start taking it. I just feel like it's so foreign to my body that it could do anything to me and I'd have no control over it. So anyways, I'd appreciate any input/ experiences you've had with this drug!Thanks!Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

I agree.. all other options should be tried before any med that supresses your immune system. My son was on immune suppressants for almost three years and now we're fighting a very difficult battle with chronic fatigue due to Epstein Barr virus and cytomegalovirus because his immue system couldn't keep the viruses down.

To: BTVC-SCD Sent: Thu, February 18, 2010 12:17:22 AMSubject: Re: Azothioprine

Hi Alyssa

I been on it for nearly 20 years for a kidney transplant and I hate it. I am on 75mg. It has wrecked my bones and skin. You never want to take something that supresses your immune system if you can help it. I know your parents are against low dose naltexone but if you were my daughter I would be trying low dose natrexone before I put you on azathioprine.

Sky

From: Alyssa Luck <luckycharms@ nc.rr.com>To: BTVC-SCD@yahoogroup s.comSent: Thu, 18 February, 2010 9:03:16 AMSubject: Azothioprine

(or however you spell it). Does anyone on here take it, or have taken it in the past? ly, I'm really scared to start taking it. I just feel like it's so foreign to my body that it could do anything to me and I'd have no control over it. So anyways, I'd appreciate any input/ experiences you've had with this drug!Thanks!Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Alyssa,If you take nothing else from this experience it will be that you have learned what kind of doctor suits you. BTW, BTVC never states to avoid medicine. Elaine was clear that one should use them when needed. I understand you are worried, but they will monitor you to make sure it isn't too much. Don't be in a rush to get off them. If they help and allow you time to heal, then you should do it. I hated it when my husband went on them, but like I said, he seems to not had any ill effects from it. In fact, the short while he was on them, in a funny way, it was a relief to not worry about his symptoms so much (I am sure your parents will feel the same!). He felt normal and was less stressed which in turn helps the body heal as well. His reduced

stress meant our reduced stress as a family too--I can only handle so many crabby males! ; )The best part is that by continuing eating such a healthy diet you will be making yourself stronger and will possibly negate some of the possible side-effects. AmeliaP.S. "I will never do this in my lifetime" My mother said the same thing when I got my first pair of contact lenses when I was at your age. She said she could not see herself diliberately sticking a foreign object into her eye. Ironically, she eventually tried them! ; )From: Alyssa Luck

To: BTVC-SCD Sent: Thu, February 18, 2010 1:52:00 AMSubject: Re: Azothioprine

P.S. I don't mean to sound harsh regarding doctors. They can't help it. Their education has been really influenced by the big pharmacutical companies. The whole direction the education takes is more one of diagnosis and treat symptom. They get trained to focus on symptom-drug type thinking that they don't see the obvious -- that they are no longer aiming to heal, just do away with a symptom. In the process, they are treating the body in parts instead of looking at the whole thing and how all the parts influence and affect each other. Your doctor

is mostly likely doing her very best to treat you in the best way she knows from her training. I just feel that there is a huge flaw in the training.It's all good =) I totally and completely agree, with all my heart. It just stinks that I have to go on an immunosuppressant. That was one thing that has been on my "I will never do this in my lifetime" list since I was diagnosed. So I'm still in shock. I just hope I can get off it ASAP, and I hope it doesn't sabotage all the efforts I've been making to be healthy. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

,There is a doctor here in the UK that almost lost his license because he dared to heal people of Chronic Fatigue by checking their adrenal function and supplementing with natural hormones to correct the problem. You might want to see about finding a doctor who will do proper testing -- like a 4 sample saliva test -- to see how your son's adrenal function is doing. AmeliaHusband UC 9 years, SCD 20 monthsLDN 3 mgFrom:

Engel To: BTVC-SCD Sent: Thu, February 18, 2010 7:04:21 AMSubject: Re: Azothioprine

I agree.. all other options should be tried before any med that supresses your immune system. My son was on immune suppressants for almost three years and now we're fighting a very difficult battle with chronic fatigue due to Epstein Barr virus and cytomegalovirus because his immue system couldn't keep the viruses down.

From: SKY JONES <subhadradasi2000@ yahoo.com. au>To: BTVC-SCD@yahoogroup s.comSent: Thu, February 18, 2010 12:17:22 AMSubject: Re: Azothioprine

Hi Alyssa

I been on it for nearly 20 years for a kidney transplant and I hate it. I am on 75mg. It has wrecked my bones and skin. You never want to take something that supresses your immune system if you can help it. I know your parents are against low dose naltexone but if you were my daughter I would be trying low dose natrexone before I put you on azathioprine.

Sky

From: Alyssa Luck <luckycharms@ nc.rr.com>To: BTVC-SCD@yahoogroup s.comSent: Thu, 18 February, 2010 9:03:16 AMSubject: Azothioprine

(or however you spell it). Does anyone on here take it, or have taken it in the past? ly, I'm really scared to start taking it. I just feel like it's so foreign to my body that it could do anything to me and I'd have no control over it. So anyways, I'd appreciate any input/ experiences you've had with this drug!Thanks!Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Thanks Amelia! Your timing is incredible! About 10 minutes ago I decided to order that 4 saliva sample test for my son. Lo and behold, when I log in to find the email with all the details, the first thing I saw was your email recommending it. What an awesome confirmation!

Now.. I'm off to search through the 1500 emails I received while I was in New Orleans for Mardi Gras.... I know I remember one with all the details on ordering the lab testing yourself <grin>

To: BTVC-SCD Sent: Thu, February 18, 2010 7:33:28 AMSubject: Re: Azothioprine

,There is a doctor here in the UK that almost lost his license because he dared to heal people of Chronic Fatigue by checking their adrenal function and supplementing with natural hormones to correct the problem. You might want to see about finding a doctor who will do proper testing -- like a 4 sample saliva test -- to see how your son's adrenal function is doing. AmeliaHusband UC 9 years, SCD 20 monthsLDN 3 mg

From: Engel <rre831 (AT) yahoo (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Thu, February 18, 2010 7:04:21 AMSubject: Re: Azothioprine

I agree.. all other options should be tried before any med that supresses your immune system. My son was on immune suppressants for almost three years and now we're fighting a very difficult battle with chronic fatigue due to Epstein Barr virus and cytomegalovirus because his immue system couldn't keep the viruses down.

From: SKY JONES <subhadradasi2000@ yahoo.com. au>To: BTVC-SCD@yahoogroup s.comSent: Thu, February 18, 2010 12:17:22 AMSubject: Re: Azothioprine

Hi Alyssa

I been on it for nearly 20 years for a kidney transplant and I hate it. I am on 75mg. It has wrecked my bones and skin. You never want to take something that supresses your immune system if you can help it. I know your parents are against low dose naltexone but if you were my daughter I would be trying low dose natrexone before I put you on azathioprine.

Sky

From: Alyssa Luck <luckycharms@ nc.rr.com>To: BTVC-SCD@yahoogroup s.comSent: Thu, 18 February, 2010 9:03:16 AMSubject: Azothioprine

(or however you spell it). Does anyone on here take it, or have taken it in the past? ly, I'm really scared to start taking it. I just feel like it's so foreign to my body that it could do anything to me and I'd have no control over it. So anyways, I'd appreciate any input/ experiences you've had with this drug!Thanks!Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

,They say great minds think alike! ; ) Hope you discover something useful. The book 'Stop the Thyroid Madness' actually has some good diagrams and information on how to interpret the adrenal lab reports. It is a very good read even if you don't think you have thyroid problems.AmeliaTo:

BTVC-SCD Sent: Thu, February 18, 2010 2:28:08 PMSubject: Re: Azothioprine

Thanks Amelia! Your timing is incredible! About 10 minutes ago I decided to order that 4 saliva sample test for my son. Lo and behold, when I log in to find the email with all the details, the first thing I saw was your email recommending it. What an awesome confirmation!

Now.. I'm off to search through the 1500 emails I received while I was in New Orleans for Mardi Gras.... I know I remember one with all the details on ordering the lab testing yourself <grin>

From: Amelia Bhide <bhide_thehague@ yahoo.com>To: BTVC-SCD@yahoogroup s.comSent: Thu, February 18, 2010 7:33:28 AMSubject: Re: Azothioprine

,There is a doctor here in the UK that almost lost his license because he dared to heal people of Chronic Fatigue by checking their adrenal function and supplementing with natural hormones to correct the problem. You might want to see about finding a doctor who will do proper testing -- like a 4 sample saliva test -- to see how your son's adrenal function is doing. AmeliaHusband UC 9 years, SCD 20 monthsLDN 3 mg

From: Engel <rre831 (AT) yahoo (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Thu, February 18, 2010 7:04:21 AMSubject: Re: Azothioprine

I agree.. all other options should be tried before any med that supresses your immune system. My son was on immune suppressants for almost three years and now we're fighting a very difficult battle with chronic fatigue due to Epstein Barr virus and cytomegalovirus because his immue system couldn't keep the viruses down.

From: SKY JONES <subhadradasi2000@ yahoo.com. au>To: BTVC-SCD@yahoogroup s.comSent: Thu, February 18, 2010 12:17:22 AMSubject: Re: Azothioprine

Hi Alyssa

I been on it for nearly 20 years for a kidney transplant and I hate it. I am on 75mg. It has wrecked my bones and skin. You never want to take something that supresses your immune system if you can help it. I know your parents are against low dose naltexone but if you were my daughter I would be trying low dose natrexone before I put you on azathioprine.

Sky

From: Alyssa Luck <luckycharms@ nc.rr.com>To: BTVC-SCD@yahoogroup s.comSent: Thu, 18 February, 2010 9:03:16 AMSubject: Azothioprine

(or however you spell it). Does anyone on here take it, or have taken it in the past? ly, I'm really scared to start taking it. I just feel like it's so foreign to my body that it could do anything to me and I'd have no control over it. So anyways, I'd appreciate any input/ experiences you've had with this drug!Thanks!Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

One of my relatives just received new insurance, saw a new doctor so I saw her blood test results.  Her test had T3, T4 and something listed under T3 (I don't recall exactly but I don't have the test now).  Those tests don't show up on my cbc.  Mine had other things like ferratin but hers didn't.

 

I think the doctor must gear the test towards person regarding age or disease?  I saw the (*) and at the bottom it mentioned if a test is normal, they won't list the result.  They do with mine.

 

Maybe it also depends on the lab.  Could it be an age thing?

 

Debbie houston cd

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..

[Guest guest]

Can regular doctors order the saliva test from an ordinary (read: insurance

covered) lab, or is it too " alternative " for that?

Holly

Crohn's

SCD 12/01/08

> ________________________________

>

> To: BTVC-SCD

> Sent: Thu, February 18, 2010 7:33:28 AM

> Subject: Re: Azothioprine

>

>  

> ,

>

> There is a doctor here in the UK that almost lost his license because he dared

to heal people of Chronic Fatigue by checking their adrenal function and

supplementing with natural hormones to correct the problem.  You might want to

see about finding a doctor who will do proper testing -- like a 4 sample saliva

test -- to see how your son's adrenal function is doing. 

>

> Amelia

> Husband UC 9 years, SCD 20 months

> LDN 3 mg

>

[Guest guest]

Also, your regular doctor may not know how to interpret the results or know what

the remedies might be. Don't know if even regular endocrinologists know how to

use saliva tests. I had some done through a compounding pharmacist who did

hormone consultations, but the supplements she recommended were only slightly

helpful (and quite expensive, with of course no insurance reimbursement). I'd

love to find an MD with knowledge in this area.

Debbie T (UC 29 yrs, Fibromyalgia/Chronic Fatigue, SCD 10/06, Lialda)

>

>

> Yes, regular MDs can certainly order the saliva test but I think it

> depends on the insurance company whether they pay it or not. I notice

> now I'm on Medicare that they pay for a lot fewer things like this.

> But I always run it through them just to see.

>

>

> Can regular doctors order the saliva test from an ordinary (read:

> insurance covered) lab, or is it too " alternative " for that?

> Holly

>