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478 Views 3 Replies 3 Participants Last post by  SoCalEric
I was diagnosed with Lupus when i was 15. Ever since then i have had a flare at least once a year. They started me on the cytoxan once monthly and once my body would settle down they would on the cytoxan also, switching it to every three months. They have never discussed any options for me about becoming pregnant. They did say that it would be unlikely to get pregnant while on cytoxan because it slows the production of your eggs. I am married now and want to have a child but i am still on cytoxan and i am worried about being able to conceive after all these years of the drug. I want to ask them about alternative treatments because i dont want to ruin any future chances and i want to start trying right away. Any advice would be greatly appreciated. I guess i would like to know if anyone thinks i still have a chance of becoming pregnant at this point.
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Hi Alisia,

I've moved your post to one of your own so you get answers directed to your own situation.

Have you discussed your hopes and plans with your rheumatologist and nephrologist?

How is your lupus at the moment? And your kidney function?

Do you have menstrual periods? Are they regular?

You can't try to get pregnant while actually taking cyclophosphamide. It causes birth defects. You need to be stopped before trying - ask you doctor how long you need to be off it, but 3-6 months is usual.

What medications are you on when you are not on cyclo, and are not flaring? It may be that if you were on stronger immunosupression in the 'good' periods that you might be able to have a longer flare free time and not need the cytoxan. Azathioprine is the best option for women who want to become pregnant, as you can stay on it during pregnancy. Plaquenil is also safe, and it is reccomended that you stay on this med too. Also steroids can be safely used in pregnancy. So there are treatment options other than cyclophosphamide.

I'd reccomend that you go to see an obstetrician or perinatal specialist about your plans. They may well be able to test you to check that you are indeed ovulating, and also discuss medications pre-conception and in pregnancy. You also know each other then for when you do become pregnant. It is important for lupus women that they are closely watched by an obstetrician in pregnancy.

Part of your pre conception planning should also be finding out if you potentially have APS (cardiolipin antibodies or lupus anticoagulant), and also if you are Ro (SSA) positive. Either your rheumy or ob/gyn can do these tests, and both should know the results.

I believe that having long periods of cyclophosphamide is more detrimental to your fertility than short bursts, but the good news is that you are still very young - the older the woman the higher the chance it will cause infertility. If you want to try for a baby now, then, it is probably sense to do so sooner rather than later.

All the best,

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Thank you for that, i'm new here so still trying to figure it out. How should i do that in the future?

I have asked them when they think the soonest i would be able to start trying and my nephritus wants me on chemo for another 2 years and said i should wait 6 months to a year afterwards before i start. My lupus numbers are actually really good. My kidney gfr is still around a 30 though. Last october it was at a 2 so she(the doc) wants to get it up as high as possible before i put stress on my body with a pregnancy.

With the menstral i actually dont get them at all because they have been giving me the depo shot.

Do they sometimes remove you from the drug for a long enough time to conceive and have the baby and they put you back on? I have always just assumed that i woulnt be able to have children because they've always told me of the affects it will have on my body. Than my sister told me about "a baby story" or some birthing show on tlc and a woman with lupus got pregnant while on chemo and they removed her while carrying the baby.

Cellcept is what i take when not on the cytoxan. And of course prednisone. Another worry of mine is that i take 3 different high blood pressure meds because i have very high blood pressure because of the kidney involvment.

Thanks for your reply!
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Hi Alisia,

Does your Doc. have any plans to get you off Cytoxan for good? I've had a couple of bouts of Nephritis, first around ten years ago and second a couple years ago. I had ten treatments the first time, the second I had a different nephrologist and he was VERY worried about the drug causing cancer. He gave me 4 treatments (1500-1800mg doses). I had to be in the hospital at 8am and would be there till midnight getting fluids to wash it out ASAP. I'd go home with orders to keep drinking and peeing as much as possible ("don't let it sit in your bladder") Cytoxan has always worked wonders for me, but he says no more. If Nephritis returns, and I imagine it will, I'll be trying Cellcept. It sounds like you've had much more than I of this stuff, sure hope you can stop it soon. It's not something one should be on long term. It's saved my butt a couple of times now and I'm worried about the chance of Nephritis returning and not being able to use it. I imagine if Cellcept didn't do the job he'd let me go the Cytoxan route again...all my Docs. have been surprised at how well I responded to Cytoxan.
Cath's advice is great. I already had a son when I was diagnosed, so the fetility thing didn't worry me. Hope things work out for you and you get to be a Mom, I enjoy being a Dad (well, my kid's 18 now, so he also drives me a bit nuts at times!).

Best Wishes,
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