[jellyjazz]

It looks like I am about to start a course of aza. because steroids aren't working to well for me at the moment. I have some questions about it though which i would like to ask the people who have had experience of this drug.

1) Is this a chemo drug?

2) What were the common side effects/how long did they last?

3) Will i loose my hair and if so when will it grow back?

4) I'm thinking of starting a family in about 2 years with my partner and my rheumy has advise me that i would stay on this drug throughout pregnancy - what are the risks for me and baby?

5) How long were you on this for? Is it a long term treatment?

6) If the aza. was stopped would i just get worse again?

Sorry for a long post but really needed advice from those who have been through this. Also i know some of the questions come across as me being vain eg. my hair! But i am 22 and have grown attached to my hair in the past 22 years

Thanks in advanced!

 

[Katharine]

Hi there

It is 'technically' a chemo drug but it is rarely used now in chemotherapy and the doses are much smaller than chemo doses. It is an immunosuppressant but according to my rheumy is quite a 'mild' one.

Common side-effects when beginning the drug are sickness and nausea which can be greatly avoided by starting very slowly on a small dose so that your body gets used to it. I didn't have ANY of those side-effects despite not starting very slowly but it's an individual thing. Other side effects are not usually felt but regular bloods need taking to lake sure it's not causing any other unwanted problems such as damage to the liver.

You are most unlikely to lose you hair - It really isn't 'chemo' in that sense and, indeed, should even stop you losing hair if your lupus were causing hair-loss. It can increase photosensitivity a little but I haven't noticed a difference.

For pregnancy, although docs usually prefer you not to be taking things like azathioprine it is recognised that the risks of not taking it are often greater than those of taking it. It is one of the drugs that 'can' be continued whereas some are totally out of the question. We had a thread that talked about plaquenil and azathioprine recently - this is one among many threads that discusses the pros and cons http://www.thelupussite.com/forum/showthread.php?t=73534&highlight=imuran+pregnancy - often the upshot really is that without imuran the pregnancy may have been too dangerous, with it there may be some risks...

I have been on imuran (aza) for almost 2 years now and yes, if it suits your body it is usually a long-term treatment.

Whether you would get worse again if you stopped treatment with imuran depends on what's going on with your disease. Generally, if you're put on it, it's because you need it, so, logically you would get worse if it were stopped, however, some people do come off some of their meds if they go into remission for a long enough period. You might also have it stopped and have it replaced with something else if it didn't suit.

Imuran has made a huge difference to me and is what keeps my bloods stable without giving me any of the less desirable side-effects of immuosuppressive therapy (and no, I don't get colds or anything more easily either though one should be more prudent on it and get things like the flu shot to try and prevent exposure).

Katharine

 

[jellyjazz]

Thank you for taking the time to reply in such detail, it helped me a lot. It was nice to read the positives as a lot of people tend to only write about the things that go wrong (naturally i s'pose!)

I was quite senstive to my other lupus drugs when it came to sickness so the advice about starting really low is a great help to me...anyhting to avoid it as i found it really tough.

I'm starting to get a better picture about it though.
Thank you!

 

[Ooohmekneeshurt]

Hi, these are my observations.


1) Azathioprine is a cyto-toxic (chemo); BUT, it is not the same as cancer chemos. It is NOT as toxic as those, but its still quite a powerful and strong drug. Some doctors call it an autoimmune-suppressant. Its role is to kill off certain white cells (cyto-toxic means, cell killer); ie those that protect others, but damage us.

2) Nausea; for me this lasted for an hour or two a day, but will fade after long use. Depending what colour hair you have, you may find a slight yellow tinge. Possibly same with your eyes and nails.

3) I dont think you loose your hair as with other cyto-toxics, but you may loose the odd few strands day by day. They will be replaced, so you may not notice any hair loss, except your clothes will be full of hair.

4) As a bloke I cannot answer the pregnacy questions, but stay away from Leflunomide (an alternative to Azathioprine) these carry a warning about pregnancy and fertility.

5) Yes its a life long drug. As you get older your white cells naturally reduce, so they might lower your dose. I've been on it for 7 years, originally at 250mg and now at 150mg.

6) Yes, but it may take some months. They say its in your system for 7-9 weeks. If you came off it, you may not realise you are getting ill for 3 - 4 months. (Just my view)

I should not worry too much about your hair; I have not lost much. After the nausea (and thats noticeable but not too bad), I dont find Aza a bad drug at all.

 

[jellyjazz]

Thank you very much

My mind is more at ease now.

I've decided to give tihs drug a go and i will be back at the hospital onthe 1st October when i give my rheumy my decision.

I'm hoping the sickness wont be as bad as the plaquenil was...fingers crossed!

 

[lupie1]

Hi Jelly Jazz, I have been on azathioprine 200mg a day for a few years now, I did feel nauseus for a while but it soon passed, I found it much better to have a good breakfast first

Good Luck with it, hope you are well, Kay

 

[bluebell]

Hi
I have been on azathioprine for about 7 years to control the lupus and auto-immune hepatitis. I have tolerated it very well and managed to reduce the steroids, which is all to the good.
However I was on a fairly high dose of 200 mgs for about 3 years. reducing to 150 mgs for another 3 years and this final year it was reduced to 100 mgs. It made me extremely stable and apart from reurrent urine and chest infections on the higher doses I have been fine. I have had monthly blood tests and have thought everything was well until a recent diagnosis of renal cancer.
Now, I do not want to frighten anyone or put them off of taking medication, after all I had a very good quality of life that plaquenil and mepacrine were unable to provide, but, and I say this advisedly, do not rely on your blood results to tell you everything. I was happy in the knowledge that everything was ok because after all I have a blood test regularly and I always get copies so I know at first hand whether there is likely to be a problem. Big Mistake!!
After suffering severe kidney pain which wasn't an infection my gp sent me for tests. Cancer wasn't even on my radar so it was a big shock to find I have it. At first I asked if it could be true because the bloods were so normal but the tests are not specific for cancer and for renal cancer there are "no markers" in the results anyway.
On consulting with the rheumy I was taken off azathioprine immediately to give the immune system a chance to fight the cancer. After my op, which is in a fortnight it will depend on the biopsy which other drugs I can take. There is also the suspicion that the aza may hav contributed to the cancer because of the high doses and the length of time I was on it. Please do not be put off taking it, mine may be an isolated case, just be aware blood tests are not foolproof and question the long term effects with your doc. I am gutted, I know nothing will be as good as aza and already my lfts are raised meaning the hepatitis is becoming active again.
Sorry this is such a long post, just had to get it off my chest.

 

[jellyjazz]

Thank you for you post. It's good to hear the bad news aswell as the good news. I'm sorry about your bad news but thank you for sharing it. I hope you get the results you need. i have all my fingers crossed for you.

I decided not to take this drug in the end and am still on steroids...after we have had our family we will look at the options again.

 

[Ooohmekneeshurt]

Now, I do not want to frighten anyone or put them off of taking medication, after all I had a very good quality of life that plaquenil and mepacrine were unable to provide, but, and I say this advisedly, do not rely on your blood results to tell you everything. I was happy in the knowledge that everything was ok because after all I have a blood test regularly and I always get copies so I know at first hand whether there is likely to be a problem. Big Mistake!!

What a great bit of advice this is!
I dont know about anyone else,........ but dont you think medicine has gone much more like 'Star Trek'-- its all numbers and tests. Then the Docs read the figures. I havent seen a stethescope in years!

I have an 'indicator',...... and its me! The Lord alone knows what is going on with my bloods from hour to hour; and often the Docs cannot find any reason for a 'spike in one or another figure';....... but I know when I am not 100%,....... and usually I'm right.

 

[bluebell]

You are absolutely right. Have you noticed you rarely get examined either by the gp or rheumy? "Bloods are fine" meaning you must be too, even if you are feeling like nothing on earth. And what happens if they are slightly off?, "oh, that's just normal for you!"
I have been experiencing a slow drop in MCHC, now standing at 28 and each doc I've seen over the past weeks, (which are a few!) says I may be anaemic, but no-one suggests iron tablets, when I suggest it eyebrows are raised. Why are we having these tests if they are ignored?
You can imagine the surprise and disbelief when I did have a diagnosis of cancer as I had been relying on my monthly tests for years. After the initial diagnosis of lupus and any other auto-immune problems, can anyone tell me what they are testing for? I thought it was to see if the medication was doing harm or to confirm a flare, or impending worse health. Perhaps instead they are just a way of reassuring the patient, like a placebo effect. I certainly will not be putting my faith in them anymore.
It does seem like a lazy way of checking a patient. I'll be endeavouring to get more "in tune" with my body as you say only you know really what's going on healthwise.

 

[Monica3]

My experience is that the rheum has me get labwork done every 3 mo or so to be assured that the disease is not spreading to my internal organs (my symptoms are primarily arthritic in nature with muscle pain too). However, there have been times that I have been feeling terrible but my bloodwork looks "fine." When I look at my doctor with disbelief, she says that the numbers do not always tell the truth. As was recommended, attend to your instincts about whether something is going on with you. At least I have the feeling that my doctor believes me when I feel horrible but the labs look"good." We know ourselves better than everybody else! My problem is that I am concerned that I am attending too much to my body by journaling about my symptoms and pain level every day. However, I fear I would forget everything and miss some important connection if I don't journal and have the history to look back on!

By the way, I just stated Aza 9 days ago for the first time. I did have mild nausea the first 4 days or so, but am feeling better now. Suspect that my increase from 50 to 100 mg next week will result in a reappearance of nausea briefly. I hope it works better for me than Metho, which I just weaned off of after taking it for a year. So glad I am done with having my children--it makes some decisions much easier to make. Best wishes to you.

 

[DeniseV]

OMG Bluebell,
I can not believe how similiar your story and mine is. I have seen the same Rheumy for 10 years. I started out on plaquenil also and then moved up to Imuran. Today, I am taking 200mg per day. About 3 years ago I was having a Mammo done and they saw a large "flame shaped: lymph-node that they just did not like and toldme it was not Breast Cancer and they wanted to watch it. 6 months later is grew a bit and was removed. When they called I was told in the tail end of it they found Non-Hodgskins Lymphoma!!! I was sent for Bone Marrow testing CT scans you name it.....There was nothing else found and I am on a "Wait & Watch" process. I will tell you I have a large node on the left side of my jaw, and also my paratoid gland on the right is a bit larger then ususal. U know I kept asking if it could be from the Imuran...I was tola ALL immune-supp drugs can cause Cancers. So last month I had to change Rheumy Dr. mine retired. When I saw the New Rheumy Dr she about lost it at the amount of Imuran I was on!!!! So, now I she her on 6/15 and I am sure we will be making some changes.....Let me know how your surgery is and keep in touch...Sending prayers and good Wish's your way...DeniseV

 

[Jennannshear]

Bluebell and Denise.. my thoughts and prayers are with you both.

 

[bluebell]

Hi Everyone and particularly to Denise. So sorry I have been away from the site for so long, as you can imagine I have had more urgent concerns.
I had the initial renal cryoablation, (the tumour is frozen by probes inserted through the skin in your back), but still had a lot of pain. The upshot was they didn't manage to get it all.
The past few weeks have been very testing and extremely anxious, but funnily enough lupus concerns have not really featured, as if I can only cope with one thing at a time. I know some days I am unwell but all I can focus on is the cancer. I think it must be that I have had lupus for more than ten years and it hasn't killed me (yet!!). When my rheumy said I am more likely to die WITH lupus rather than FROM lupus I couldn't believe he had the nerve to say such a thing, after all how can you be in so much pain and distress and it not be serious? Now I understand that he meant this was a chronic condition that could be largely controlled, and however serious the flares and other concerns, was not life threatening, or at least not to me then or in the near future.
I have been back and had another operation but won't know the result until another ct scan in 3 weeks. I'm seeing the rheumy this week and discuss which meds I can take to replace the azathioprine. The immunologist says there are meds that boost the killer T cells to fight the cancer without alarming the body into a flare. I will have to do some research, unless anyone out there knows what they are and how effective?
I hope Denise that you are being proactive in your "watch and wait" and things turn out okay for you.
Thank you everyone for your good wishes, fingers crossed for a positive outcome.

 

[believe]

jellyjazz-

This has been an imformative thread about aza. I have all the same questions you had, as I sure many others. So did you still opt not to take this drug and find other options? How is your lupus doing? If you chose to take aza, how has it been working for you?

Hope all is well...