Azatheoprine

[Marcus1988]

Hi guys,

You may have seen I posted a few weeks ago about my GPA and my consultants proposed 'maintenance' treatment of daily Azatheoprine.

I had some worries about taking the drug as I haven't yet started a family and have read that men looking to father children shouldn't take the drug and that there had been a Danish case study in the past, which showed that a large proportion of men taking the drug fathered children with physical disabilities. I obviously don't have a problem with having a child with disabilities but don't like to think I will be knowingly giving any of my future children a higher chance of being born with a disability.

The specialist nurse made me feel a lot better about Azatheoprine by telling me she's had patients of a similar age to me in the past and they haven't experienced any problems with fertility or children with physical disabilities. But that there's is a chance it could affect me

I suppose its like any pretty hardcore drug, there's risks.... In the long run its probably worth the small chance/risk if it means controlling my condition.

I'd be interested to know others opinions as I don't want to make a decision based just on my feelings as I also have my girlfriend to think about and our future families health...

I've also considered freezing my sperm before starting on my treatment and simply using this when we're ready to start a family...

I'm leaning towards taking the drug... but I'm sure you can all appreciate that its not an easy decision!

Look forward to your comments

Marcus

[Suzym2u Moderator Vasculitis UK]

I did not think Azathioprine affected fertility in men or woman, because as far as I remember it is given to ladies who are pregnant as it is the "least" harmful of the immunosuppressant drugs, but I will check this information with others who will know. This page on the VUK website discusses fertility and vasculitis and its medications so it just might help with some information. Marcus. vasculitis.org.uk/living-wi...

[vivdunstan Volunteer in reply to Suzym2u]

When I started Azathioprine in 1998, aged 25, I was ordered by my consultant not to become pregnant. I'm not aware that it affects fertility as such, but it is thought that it may cause birth defects. And this will be why the British National Formulary does not generally advise it is used in pregnancy:

evidence.nhs.uk/formulary/b...

Having said that, it is probably one of the least risky immunosuppression drugs in fertility terms. Methotrexate, for example, is much much worse, especially for women, because it is also used as a drug to induce abortions.

But my understanding is that Azathioprine is not recommended during pregnancy. It's one of the reasons why I have been unable to have children since starting treatment 18 years ago So I won't ever have any. That's not just due to Azathioprine - I was on many other drugs over the years, including Methotrexate and Thalidomide (notorious for birth defects). But it is a factor.

[Suzym2u Moderator Vasculitis UK in reply to Suzym2u]

There is evidence to indicate that the use of Methotrexate, Mycophenolate or Azathioprine can cause foetal deformities.

Although there have been no controlled trials there is anecdotal evidence of congenital defects in all three although Azathioprine is the least damaging. However in many cases it is a matter of weighing up the benefits and weighing up the risks. Most doctors advocate using contraception while taking any of these drugs. ( As Viv has stated )

Having said all the above, I do know some young women and young men diagnosed with vasculitis who do take Azathioprine as a maintenance therapy who have gone on to have children.

Holly's story Spring 2012 Vasculitis UK Newsletter pages 9 and 10 vasculitis.org.uk/content/d...

There is also a young man who lives close to us who became a father at the age of 26 after having both Cyclophosphamide IV followed by a maintenance therapy of Azathioprine.

Rituximab is the favoured induction and maintenance drug for treating patients of child bearing age.

Animal studies have not found evidence of foetal abnormalities using Rituximab and there is no evidence of this in humans either. Despite this the manufactures of RTX have recommended that individuals of child bearing potential should use effective contraception during treatment and up to 12 months following therapy by RTX

"Pre conception counselling should be sort by both men and women with vasculitis wanting children, so that risks to the mother and baby can be discussed and appropriate plans made. "

[Alpsy]

I was 30 wen I was diagnosed with WG/GPA. I hadn't had Kids but did want them. I'd bn on MMF, Aza, Cyclo, Infliximab ect so my eggs were decreasing rapidly because of this. I tried IVF, 1st one failed and 2nd one only produced 1.5 eggs which u hav to hav a min of 3 for them to take out so we tried naturally and it failed also. So we decided to Adopt 2 kids which we adore but 4 months into the adoption I had a miscarriage which we cudnt believe it even happened!! Exact ally 1 year later I was pregnant again and everything was great! I was monitored very closely. I'd had Rituximab so I wasn't on any immunosuppressive drugs just steroids and hormones as I have a Diabetes Insipidus. However I was slowly relapsing just before I had my Baby but still didn't hav any problems until after the birth. Anyway I'll stop babbling on now but my Son is a healthy little boy, I actually had to hav a CVS test at -4 weeks as I was a high % of having disabilitys but I think it was my hormones and bloods gave the wrong reading, anyway this test showed many illnesses and all came bk clear. I did hav another test which I had to pay for which was a 3D scan or 4D scan which u hav at 28-30 weeks and this does show any defeats to heart and other organs. My Docs hav always said if I wanted to become pregnant Aza or Rituximab ( after 3 months ) were the btr drug so I've never heard this about Aza to b honest. Hope this helps and I wish u all the luck in the world xxxx

[AndrewT]

Dear Marcus,

I fully understand you quandary. I COULD suggest 'impossible' situations, in order to make you really think about your situation....and so on. I clearly don't need to do this and, am fully aware, that this would only cause you more pain and distress.

I will pitch one idea to you, that might well not have been considered. What does your wife/partner feel, about this? Indeed what are your parents/her parents opinions? I could extend this to your/her wider family. These are the people whose opinions 'matter' most-after your own naturally. Have they had any experience of this sort of thing? Are you sure-have you asked?

For myself, I have never faced this question and, because of my age, almost certainly won't.

Sorry that I can't be of further help Marcus. Please do let us know what you decide, will you.

Kindest wishes AndrewT

[Marcus1988 in reply to AndrewT]

Hi Andrew,

Thanks for your reply, I've decided that I will begin taking Aza.

I wrote a very comprehensive letter a few weeks ago to my consultant with every question I had about my future treatment and the drug and was satisfied with his reply. Also spoke to the specialist nurse who advised me she'd seen patients of my age take the drug before without problems.

So please keep your fingers crossed for me! Should be starting at the end of next week!

all the best

[AndrewT in reply to Marcus1988]

My fingers, toes, even hairs are crossed for you Marcus. My prayers and kindest wishes, to all your family please.

AndrewT