Just found this website so I am not so sure how this works. It looks like Jodi is very active and seems to know a lot.
OK, now about me and my questions. Had a liver biopsy and was diagnosed with autoimmune hepatitis. I was put on predizone for about 4months and did very well on it (except of course for the obvious weight gain and chipmonk cheeks). When I was taken off the predizone, I was put on 100 mg Azathioprine. I have been on Azathioprine for little over two years. My gastronologist says this medicine causes some types of cancer and wants me off it. Another gastro tells me not to go off this medicine. I was also told I have to be seen by a hepatologist to advise me which way to go and to monitor my bloodwork.
Has anyone on this site been told azathioprine can cause cancer and if so, what was the alternative? Also I live in South Jersey and was wondering if anyone knows of a hepatologist I can contact?
Thanks for your time and hope to hear from someone soon.
Hi Diane. Isn't this site awesome? I'm truly grateful that I stumbled across ot myself. It's been nice having others like myself to talk to.
As far as azathioprine causing cancer I have never heard such a thing. I only see my gastroenterologist for treatment and he handles all labs. He does specialize in hepatic illnesses, more so than would a normal gastro.doc. You can find one by calling your local hospitals' referral telephone number or check the phone book.
Just a few questions for you and a comment. I was just diagnosed with autoimmune hepatitis 2 weeks ago. I too have started taking prednisone and azathioprine and have the same concerns you do. First off, how much weight did prednisone cause you to gain and how long did it take for you to notice the weight gain. How much were you taking? I am really concerned about that. Secondly, I too was told the azathioprine can cause certain types of cancer, I think the most common is lymphoma and some types of skin cancer but it says to watch for any unusually lumps, bumps and bruising you might have. I really ***** that you need to take one thing to save your liver and have to worry about it causing some other horrible problem. My Dr. seems to think that the risks are very slight and would be more common in someone who has to take the medication very long term. Have you ever tried to go off and had a relapse or just considering that now. How long did it take your liver number to come down after you started on your medication?? I am encouraged to know that you have been doing well for 2 years, I am very scared of this diagnoses and it is great to know that things can get back to normal.
I hope this was some help, good luck to you
I am on azathioprine and have been on it and off of it before. I'm in the process of weaning down to come off again because my numbers are good. My understanding is that as long as your numbers are fine you can be off of meds. I don't have any telltale damage signals and ultrasounds are fine. But once I do get a bad read then it's back on meds. At least it's a break, I'm sick of pills. My doc. treats that way to give you a break, if you don't need it why take it ?
I highly recommend the book Coping With Prednisone by Zukerman and Ingelfinger, M.D. Last year I spent about eight months on prednisone without the usual weight gain. It's important to watch the diet very closely, particularly sodium.
I'm also on azathioprine and am reading with interest the comments in this forum.
Sorry my computer has been down for quite awhile & just got it up & running.
I have been on both prednisone & azathioprine for about 6 years. There are risks with both drugs but the gain outweighs the risks. Without the drugs you could pass from liver failure. I know the drugs can reak havoc on you in other ways though. For me the prednisone has really hurt my bones. I have developed osteo from it & it seems to get worse with the passing of years, especially my back has lost alot & hurts continually even though I am on meds & calcium plus D to help it somewhat.
I am at this point on 50 mgs of the aza & 2.5 mg of prednisone. I only gained a small amount of weight from the prednisone I guess due to going immediately also onto the aza at the same time. I can't remember how long I was on the high dose of prednisone but I do remember the cut down factor of it.
My numbers are good but I have been told by my hepatologist that these are both drugs I will be on forever. Not good but a have to case as quite alot of damage was done to my liver by the aih.
Never though did any doctor tell me that I could develop cancer from the drugs but maybe it is a question to ask in Feb when I see my hepatologist again.
A big welcome to you all & sorry my computer has been down so long. Jody
I always look up the medications on the net. Mayoclinic ******* has lots of info on illnesses, and of course there are many other drug sites. Yes, Aza CAN cause cancer. Yes, Lymphoma is the typical cancer. When the doc told me I needed EITHER Imuran or Methotrexate, I chose Methotrexate due to the fact that it's supposed to KILL cancer cells AND Imuran (azathioprene) CAN cause cancer. Anyway, you have to chose to accept the BENEFITS of this drug, and hope you don't get the cancer. If you don't take it, you may die from Chirrosis of the liver. Not fun. I have autoimmune hep and take Milk Thistle (to regenerate healthy liver cell growth) and L-Carnitine (to expel excess fat from my liver), and also cut back on beef and man made carbs. All of this has helped tremendously!
I went to WIKIPEDIA ******* and found the below info on Azathioprene:
Long term side effects
Metabolic pathway for azathioprineIt is listed as a human carcinogen in the 11th Report on Carcinogens of the U.S. Department of Health and Human Services, although they note that the International Agency for Research on Cancer (IARC) considered some of the animal studies to be inconclusive because of limitations in the study design and inadequate reporting. The risks involved seem to be related both to the duration and dosage used. People who have previously been treated with an alkylating agent may have an excessive risk of cancers if treated with azathioprine. Epidemiological studies have provided "sufficient" evidence of Azathioprine carcinogenicity in humans, although the methodology of past studies and the possible underlying mechanisms are questioned. The various diseases requiring transplantation, and thus azathioprine, may in themselves increase the risks of non-Hodgkin's lymphoma, squamous cell carcinomas of the skin, hepatobiliary carcinomas and mesenchymal tumours to which azathioprine may add additional risks. Those receiving azathioprine for rheumatoid arthritis may have a lesser risk than those following transplantation.
Under FDA rules, this drug, like many others, excludes eligibility for blood donation.
Oh, dear. We need to start from scratch here. Moosehead, yes, you need to be constantly monitored through blood tests as you change medications. Everyone is different, and you can't just be told what to take without having blood tests to check on the effectiveness of dosage change.
Yes, azathioprine, like every other drug, has side effects and dangers. However, it seems to have an extremely low risk factor, and few people have bad reactions to it. It's known as a steroid-sparing drug, allowing you to take less Prednisone.
I began with 80 mg Prednisone with 100 mg Imuran (azathioprine). As is typically done, the Prednisone dose was quickly lowered at first, then very, very slowly reduced, with constant blood tests. At first, I had tests three times a week. Now I'm down to once a month. I was diagnosed eight years ago.
Most people stay on medication for many years, and usually on azathioprine for life.
While taking Prednisone, you absolutely must take about 1500 mg of calcium, preferably calcium citrate, with Vitamin D. This is essential, as prednisone leaches calcium from your bones. You should talk to your doctor about taking a drug such as Fosamax to protect your bone density. Ask about having a baseline bone density scan. These are good to have done at intervals, as they can help a doctor (probably an endocrinologist) decide what type of bone-protective drug will be of the most help. I also have had x-rays and MRIs of the spine for that purpose, but most of you won't need to. Make sure your diet is rich in calcium: dietary calcium is more effective than supplements. Get as much weight-bearing exercise as you can handle, as this also helps your bones stay strong.
Some doctors believe that people who go completely off Prednisone and azathioprine have a more difficult time getting AIH back under control if there is a "flare". They recommend a maintenance dose be maintained. You might want to do some research on-line about this and discuss it with your doctor.
Yikes to the Cancer! I do have bone density loss very badly & I do take a med for it Evista, plus I take 600 mg of calcium plus 400 mg of D daily but nothing seems to help the issue of bone loss much. I am down to 2.5 mg of prednisone a day. I see my doctor early next month & my intentions are to ask him many many questions.
I was diagnozed with AIH about 3 and a half years ago. I am also on prednisone and azathioprine. I tried at 2 different times to get off meds, but both times my #'s went back up as soon as I was off. My Dr. is giving me a choice of staying on 100mg of azathioprine and 5 mg of prednisone OR 50mg azathioprine and 10mg of prednizone. Anyone have any thoughts on which is the lessor of the 2 evils? Looking forward to your comments. Thanks.
Personally I would do the 100 mg azathioprine/5 mg prednisone. The less stereoids the better. Have you ever been just on the 100 mg az? I was and responded well. Enough that I could drop to 50 mg for quite some time.
I was Dx last May AIH, ast 1150 (the rest follows), don't drink alcohol to speak of and never did drugs. Just got back from Bermuda with what looked like a perfect tan until my boyfriend noticed my eyes were yellow.
I have a brillant liver specialist. Of course he wanted high dose pred and low dose Imuran or low pred and hgh Imuran. I suggested low dose prednisone 30mg only, he agreed but wanted labs weekly. Within few weeks ast 96 ""YAHOO"".
I am currently on 5mgs Pred. I have weened down as low as 3mgs couple of times (most recent, last week) but feel enzymes elevate. When I feel enzymes elevate I have my lab work to verify. Had lab work yesterday ast 90 alt 60, not too bad but not good enough of course.
I am thinking Sandra Cabot has the good idea, I have tried her product and I did feel and seen an improvement. But, how the heck do we get to the root of the problem? How do we stop the immune system from attacking the liver"???
I am working complementary medicine while trying to get to the root of the problem.
Has anyone heard of the Autoimminity Bible and Norton Protocol? Very interesting, may want to google. it is an ebook I think about $24.00.
I hear there is a new autoimmune surpressant medication with less side effects then Imuran but hasn't been fda approved yet. Keep eyes and ears open.
I do not like prednisone and I am determined not to take Imuran unless absolutely necessary.
I am very concerned what the prednisone is doing to my adrenal glands. Oh, I am also using pregnonolone and progerterone creams (to support adrenal glands while weening off prednisone). which are RX from OBGYN. These creams are made up in compound pharmacy.
All very complicated!!!!!!
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