Has anyone with WG ever encountered any infertility problems ?

[mandijt]

[John_Mills Volunteer]

The only thing I know is that the use of Cyclophos to treat WG can cause infertility and anyone who is of a certain age can store their eggs/sperm before they commence treatment. In an emergency (life or death) Cyclophos maybe used without this being discussed. The new drug Rituximab if used in place of Cyclophos apparently does not have the same effect on fertility. I will try and find out more information for you. Having WG can affect a pregnancy but I will have to talk to someone who has more knowledge than myself. So will get back to you as soon as I can.

[mandijt]

hi there

Oh, theres no need to look into any details for me - its a little too late now.....i have completed my family. When i was eventually diagnosed with the WG, an ENT surgeon had said to me that he was aware of infertility problems (not related to the drugs) that had been experienced with this desease. I did have fertility problems and was just curious if anyone else had also as i have never seen in mentioned anywhere.

[SueAshdown]

I was sent into an premature menopause due to second course of Cyclophos!

[John_Mills Volunteer]

We met a very nice lady at a support group meeting this year and she also said the same as you Sue and she was only in her mid thirties.

[lisa-ranyell Vasculitis UK Volunteer]

I think it is luck of the draw as far as fertility goes. I am in contact with a young girl (about 24) who has had WG for a number of years, has had all the treatments that we have, plus a kidney transplant! she has just given birth to a beautiful baby girl. Also someone ay my hospital who has upper respiratory problems similar to myself and has had cyclophos has successfully gone on to have children. They always tell you infertility is a risk but by no means a certainty.

[mandijt]

ahh, this is all very interesting! I too went through an early menopause at 40 - no family history of it either (mum, grandma, great grandma all late 50's).

[John_Mills Volunteer]

According to Dr Jayne there is little proper evidence on this topic but he has found that WG tends to make women less fertile but not infertile. This is not specific to WG, it occurs in other similar chronic inflammatory diseases. But of course the cyclophos CAN cause infertility but not always. He also says for men, WG can occasionally course testicular involvment but again it might be the case that it makes men less fertile, but there is no hard eveidence.

[vivdunstan Volunteer]

My periods stopped completely for 5 years, due to the combination of drugs I was on. I'd been on Azathioprine for years, but within a month of adding Mycophenolate Mofetil to the cocktail my periods stopped totally. I was only 32. They only resumed after my Azathioprine dropped to 50mg a day.

I am effectively infertile though, because I can never stop taking my cytotoxic drugs, and while I am on them I must not become pregnant. So I can never have children thanks to this disease (cerebral vasculitis in my case), and the treatment I have been on since I was 25.

I am now also on Methotrexate (used for abortions) and Thalidomide (causes birth defects) so pregnancy is even more out of the question.

[John_Mills Volunteer]

Viv, that is awful for you, we had not really realised it, but now you have said it, it is obvious. It is a dreadful disease and the treatment is almost as bad.

Dr David Jayne has also confirmed that Cyclophos does bring on early menopause.

[vivdunstan Volunteer in reply to John_Mills]

Thanks both. It does upset me, but I've come to accept it. I know that many vasculitis patients are much older so having (more?) children isn't an issue for them. And some younger ones already have children. But I fell young aged just 22, newly married, started my treatment age 25, and because my disease is particularly aggressive I've never got off the drugs, and my cocktail just gets more toxic over time. And I think this is something the medics should consider. It's not just Cyclophosphamide that poses fertility problems for younger patients. The other drugs too, especially if they are needed long-term.

[SwgS]

Cyclophos stopped my periods too,was talking with doc today about early menopause and hrt etc