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MCC
01-14-2010, 02:51 PM
I've just started my cyclophosphamide treatment, only one dose and was wondering what females have been advised about preserving fertility?

I have an appointment regarding it tomorrow. I'm 29.

capabayan
01-14-2010, 07:49 PM
Make sure you are on a strong birth control! I was not taking anything when I originally started the cyclo, but my doctor put me on the birth control shot (Depo-Provera) as soon as I could see her after I got out of the hospital. It's still going to be hit-or-miss from my understanding when I do get off the meds and try having kids, but you want to be taking something that can somewhat protect your ovaries and other organs while you're on the cyclo.
Talk to your rheumy and make sure you have a good OBGYN with Weggie experience.

katwoman
01-14-2010, 07:50 PM
When I was originally put on that drug my Immunologist and Rheumy both discussed the option of storing my eggs as there is a chance of infertility. It something I'm sure they will cover in your appointment and it is something you need to consider....for me I was already reeling from being diagnosed with WG and had just come out of weeks in hospital being poked and prodded and so did not even want to contemplate any more thoughts of more things being done to me.

Luce
01-15-2010, 06:50 AM
I'm going through the same dilemma - I was not given the chance to preserve any eggs before starting cyclo because I was just too ill and as I was already on the depo-provera contraceptive injection it would have taken many months for my body to start producing eggs that could be harvested. I'd have died waiting! I do thoroughly recommend a reliable form of contraception while on any of the immuno-suppressive drugs like cyclophosphamide, azathioprine, cellcept etc. I've been on all of them and they all state you cannot get pregnant while taking them because of the damage they cause to the foetus.

I basically have to wait until I'm in remission or it is possible that I may be able to have some Rituximab which could give me a small window of being able to conceive. I'm 26 and not ready yet, but I just have to cross my fingers that I am still fertile and deal with the issue when I'm in a position to have a child.

The way cyclophosphamide makes you infertile is by inducing an early menopause, so there's a good chance if you're young enough that you'll still be able to conceive for a few years before the menopause sets in at say 35 instead of 45.

Jack
01-15-2010, 07:56 AM
I know the thread is mainly aimed at women, but I thought I would chip in and add that the cyclo. made me sterile, but my adopted daughters are wonderful! :)

elephant
01-15-2010, 09:50 AM
I have two adopted children too. The doctors were against it because of my kidney transplant and hypertension. I am very happy and blessed to have these beautiful children in my life!

MCC
01-15-2010, 02:26 PM
Thanks for your replies. I would certainly be keen to consider adoption. My sister is a foster parent.

I went to the doctors today and have been told it is really too late to take eggs for storage now as I've already started treatment. Anyway, my doctor was not so enthusiastic about egg storage working anyway- it is better to store embryos if you are going to do it as they are more viable. We agreed I will have the monthly injections to try to protect my ovaries before each does of cyclo. Apparently this is still quite experimental in that they don't know for sure it works, but it won't do any harm to have them.

They said the chances of an early menopause are very high and it would be mostly a case of wait and see after I've finished treatment.

Mike
01-16-2010, 02:49 AM
My daughter was 25 when she got WG.

After going into remission and having done cyclo her WG doctor told her no way to having a baby.

Against his wishes she gave birth in 2008 to a healthy baby boy. It was a high risk preg but everything worked out fine. Luca was born early at 6 months.

This year Tracey got preg again and miscarried after 7 weeks. She came out of remission in November and has started treatments (cyclo) again.

Mike

Jack
01-16-2010, 02:55 AM
Sorry to have to say it, but to gamble on a baby's future for the sake of gratifying your own wishes is a very selfish choice to make. I would never dream of having children given the nature of the drugs we take unless I had been "clean" for a long time and had my doctor's approval.

Doug
01-16-2010, 03:59 AM
I agree with you Jack. All children are blessings (until they are teenagers, then there's a sorting-out!), but to go into a pregnancy knowing of the potential risk to the fetus is touching on a very personal moral choice.

These days, when ultrasounds give us a womb with a view into the developing child's physical and medical issues, a child with severe medical or developmental issues is a high candidate for abortion. People with strong feelings against abortion are apt to carry the child till birth, regardless of the developmental issues. Either way, wow.

I don't know what the odds are for a full-term "normal" baby for weggies who are on or have been on the classic Cytoxan/Prednisone treatment, if they've even been determined, but anyone considering having a baby before getting a competent doctor's OK (or even with that approval) really needs to sit down with their spouse and deal with the potential for the worst outcome and how well they are able to handle the medical and emotional costs of a premmie with developmental or medical issues OR a baby who dies or is stillborn because of the drugs.

This is a topic that needs its own thread, above and beyond the question of fertility. It's a real hot potato issue.

MCC
01-18-2010, 04:03 AM
From what I've been told, I shouldn't get pregnant for 6-8 months after finishing the cyclo, but after that it is not an issue to try. Whether it happens or not is another thing.

gwenllian111
01-28-2010, 08:31 AM
Hello.

I had cylco when I was 14 years old, and my periods stopped for a long time - and I was convinced that I had been left infertile as a result.

But, as you can see, I got pregnant in my early twenties and went on to have 2 more chidlren thereafter.

When I was given cylco, my Rhemy gave me 'ovarian protection' injections, to induce a temporary menopause, which was meant to protect my eggs. When the cylco treatment finished, my periods gradually came back and I went on to have another pregnancy.

I have been on Ritixumab for quite a while now, and even breastfeeding still.

Good luck. xxxx

Sangye
01-28-2010, 08:39 AM
Gwen, how are you feeling these days?

gwenllian111
01-28-2010, 08:51 AM
Hi Sangye
Not too bad... I've been having unexplained breathlessness lately, and my peak flow rate has dropped, so my Rheumy is sending me for a neck CT and lung CT to see what's going on. I also have a 'lump' of some kind in my throat, but no one knows why, so having some investigations re that.

I'm a bit concerned that there's something going on as my CRP and ESR keeps creeping up, but the good news is that i'm still ANCA negative, and i'm still covered by my last infusion of Ritix.

How are you getting on?

Gwen x :-)

Sangye
01-28-2010, 09:09 AM
I'm doing okay. Not great, but mostly treading water. Lately I've been feeling more hopeless than usual about getting better. The new year is hitting me hard and I'm wondering if I'll ever be able to get back to work.

elephant
01-28-2010, 09:37 AM
Sangye what was your predicted date or goal to get back to work?

Sangye
01-28-2010, 09:50 AM
Sangye what was your predicted date or goal to get back to work?
LOL-- 3 months after diagnosis. Sept, 2006.

Okay, well not so funny... I can't even stand for longer than 5 minutes without fluid pooling in my legs and feeling all my energy drain. It isn't something that can be restored via physical means, like exercise. It's a loss of my foundational chi. I'm also unable to get out and function 2 days in a row most of the time. Going to the pool yesterday meant being at home today-- no strength to take a shower, even. None of this has changed in well over a year.

I have no way to tell when (or if) I can get back to work. My docs have no idea either, and give no prognosis. They just say do what you can when you can.

JanW
01-28-2010, 10:39 AM
Sangye - my hope is that little by little you will be able to regain your strength. This has been such a tough road for you and yet you stay so positive and offer such good advice for us all -- thank God for the Internet, huh? I remember thinking when I heard that I had SS, the very worst thing in the world would be if i would have to have the surgery to fix it. When I heard two weeks ago that this was definitely the case, I was sitting there having an out-of-body experience thinking, "guess what, my world didn't just fall apart even though the *worst* thing just happened." Not to compare this at all to your situation but something horrible has happened to you and yet every day is a new day. You should be really proud of your strength battling this disease. You are an inspriration to all of us.

Sangye
01-28-2010, 11:26 AM
Thanks, Jan. :)

elephant
01-28-2010, 12:14 PM
Beautifully stated Jan.
Sangye, in a way you are working right here on these forums and helping a whole bunch of us Weggies. I am so glad you get yourself to swim even though it wears you out the next day.

Sangye
01-28-2010, 12:28 PM
I'm glad for the chance to help others and use my brain a bit. The pool is the only thing I can do for fun. I'm grateful I have it.

elephant
01-28-2010, 01:10 PM
Sangye, what can they do about the pooling of the fluid in your legs ( lymphatic system)? Can a vascular surgeon do anything to help the vein in your legs pump better?

MCC
01-28-2010, 01:32 PM
Hello.

I had cylco when I was 14 years old, and my periods stopped for a long time - and I was convinced that I had been left infertile as a result.

But, as you can see, I got pregnant in my early twenties and went on to have 2 more chidlren thereafter.

When I was given cylco, my Rhemy gave me 'ovarian protection' injections, to induce a temporary menopause, which was meant to protect my eggs. When the cylco treatment finished, my periods gradually came back and I went on to have another pregnancy.

I have been on Ritixumab for quite a while now, and even breastfeeding still.

Good luck. xxxx

Thanks for posting that Gwen, it's good to hear your positive outcome!

I must confess that at this point I do not want children, so to be told I may never have them has not devastated me as much as it would some people, but I may change my mind one day. I'm having the protective injections.

Sangye
01-28-2010, 03:31 PM
Elephant, the MDs have no real explanation or solutions about the fluid in my legs. I've tried wearing support hose that push fluid upward, but it actually made things worse.

From a holistic perspective, the cause is two-fold.
1) Mechanical-- Each muscle in the body has a corresponding organ or gland. The gastroc muscles correspond to adrenal glands. My adrenals are so badly damaged that my gastrocs barely contract and resist muscle strengthening. The only way to get them to fire is to boost the adrenals--part of the immune system-- a definite no-no. Muscle contraction is the main way fluid is pumped up from the feet.

2) Subtle energy-- My kidney/adrenal chi is nearly gone. Kidney chi depletion causes fluid accumulation in the lower extremities. This is why I have the sense of deep energy loss with standing/ walking, along with fluid accumulation. It isn't exhaustion, muscle fatigue or feeling faint. It's a feeling that I could die. Hard to describe, but every acupuncturist who takes my pulses is horrified. The kidney pulse is completely absent and most of the other pulses resemble someone just before death. Even acupuncturist can't really treat this properly-- too stimulating to the immune system.

This is the frustration. If it were a matter of exercising to rebuild, I'd be thrilled.

gwenllian111
01-28-2010, 07:05 PM
Thanks for posting that Gwen, it's good to hear your positive outcome!

I must confess that at this point I do not want children, so to be told I may never have them has not devastated me as much as it would some people, but I may change my mind one day. I'm having the protective injections.


What upset me most was when I was fisrt given Cyclo, no one told me, and I only got told when my hair fell out at 14. I was gutted, and I thought I had the right to know what meds I was being given! I was then convinced i'd been rendered infertile, and it was a lot to take in.

Good news that you're on the OP injections, they seem to work really well.

Good luck, whatever you decide in the future xxx

elephant
01-28-2010, 10:24 PM
Gwen when I was in the children's hospital , I was going down hill fast they gave me high doses of prednisone and I think it was cytoxan but not a 100%. I know they wanted me to take a drug that was going to make my hair fall out. Back then they (doctors) did not do a good job talking to a teenager about the importance of taking a drug to save your life and the consequences
if you didn't. I think I took the cytoxan for a short time because I noticed my hair falling out and I stopped it. I tried to get my records ( hospital stay when I was 15), they are unable to get them. Sorry that happened to you.
Mandycc, wish you the best! I adopted two beautiful children ( the were infants when I got them), cause I could not have kids because of kidney transplant.

elephant
01-28-2010, 10:29 PM
Sangye, boy your really caught in the middle. I think you are right on it... about the muscles not able to push the blood back up to the heart.... The prednisone causes muscle wasting and fat accumulation. Hope in time this will get better. It's too bad the WG specialist don't have a Case Manager for us. We really need manage care!

Sangye
01-29-2010, 02:49 AM
I'm so sad for those of you who had to undergo Wegs treatment when you were kids, and especially sad that no one even explained it all to you. Glad to see that's changing.

Doug
01-31-2010, 08:57 AM
Echoing earlier comments, Sangye, the positivity you bring to this forum, the accurate descriptions of cause and effect for disease processes and their treatments, the damn nagging (ha!), all help others in need. I keep forgetting you are dealing with some of the worst effects of this disease and misguided treatment while you give this commentary. Same with Jack.

I am blessed with a reasonably good "new normal", certainly one that's last a long time, and, while it doesn't mean I didn't go through incredibly rough times at one time, it still seems unfair that WG is so variable that some go through hell, while others go through heck!