Rilutek and male fertility

[Danijela]

I was wondering if anyone can provide any leads on Rilutek and its impact on male fertility.

The only studies I come across are about male and female rats (and impaired fertility) but no definite data on humans. Thanks.

 

[DeeMichelle]

Hi
I have not heard of any human studies at all it's all rats and I think they were on a very high dose. Have you asked a good neurologist? Do you have access to a good neuro? They may have anecdotal evidence in the absence of research.

Kings College Hospital in London have a very good ALS unit so does Queen Elizabeth in Birmingham (there I really like Dr Pall) and I wonder if someone in these units may have experience of Rilutek and conception.

I had my child by IVF (I don't have ALS, but my family have the hereditary form) so a good assisted conception unit may also be of help and are used to infertility problems due to illness and drugs. Sadly all vary in terms of helpfulness.

I'm sorry I don't think anything I'm saying is going to be much help or new to you, but I did want to reply to you. I really do wish you both well.
Deex

 

[Al]

Just a guess here but with the average age of people getting ALS being 50ish I don't think there'd be much studying done on fertility. I do know of a few on here that have had babies after diagnosed but don't know if they were on Rilutek at the time.

AL.

 

[ktmj]

I would suggest your own study if you are interested. I used to tell the wifey that we would never get pregnant without practice.:mrgreen:

Sorry, but I'm not exactly right, regardless of my situation.

 

[Danijela]

My partner and I were told by the hospital consultant that he knows of a few cases where male PALS have fathered children while taking Rilutek, but very few (which can be due to combination of factors).

When I looked into it further I learnt that Rilutek for female PALS considering pregnancy should be considered only if the benefits exceed the risks (deformity, miscarriage etc.) The rest was related to mice.

I guess the average age of onset is the factor in lack of research, however my partner is 41 and I am 36. We very much wanted to start a family before his diagnosis and are still considering it. We shall seek further advice at the hospital appointment tomorrow.

 

[DeeMichelle]

Hope you get some answers.
Dx

 

[ktmj]

Danijela, my apologies for the comments above. Looking back over it it was probably inappropriate. I try to handle a lot of things through humor to get me through, and probably got carried away.

I seriously hope you can find a good answer to your question. I know it is a tough decision.