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clomid or letrozole? what's your experience?

(10 Posts)
pinkdaffodil23 Tue 10-Nov-15 21:00:15

my specialist has recommended I start taking letrozole to make me ovulate. He said it was far more successful than clomid and that it's the better option.
I felt happy at the thought of clomid I'd researched it and understood it.
I'm a bit confused when it comes to letrozole though. It supposedly has an increased risk of birth defects and it's actually a cancer drug.
I don't know whether to go back and say I've changed my mind to clomid instead.
Does anyone have experience of letrozole?

Shellster52 Wed 11-Nov-15 00:21:27

I sound like you. I would always go away and research the hec out of everything and get myself all worked up. I think I only stopped researching once I ran out of things to look up!

Personally I tried both Clomid and Letrozole. Neither worked because it turned out my husband had 100% abnormal sperm so we went down the IVF route.

Personally I liked the Letrozole better. The Clomid works by binding to your estrogen receptors so that estrogen being released from the follicle can't bind there. The brain normally sends out FSH when the estrogen levels are low at the start of the cycle and drops it back once it detects estrogen in the blood stream from the growing follicle. Clomid works by binding to your estrogen receptors so the brain does not detect the estrogen in your body which makes the brain pump out more FSH in order to get your follicles growing. The trouble is that the Clomid stays in your body for 6 weeks. And because it has bound to your estrogen receptors, nothing else can bind there and because your uterus needs the estrogen to bind there in order for it to thicken and allow for implantation, my already light periods became even lighter. By the third cycle in a row of taking Clomid, my period was literally a tiny drop of blood in my underwear. So to me, it was not productive even if I was ovulating multiple eggs, if they then were not going to be able to implant because all I had to line my uterus for implantation was a tiny drop of blood.

From my research, the Letrozole does not stay in the system and so did not cause this problem. I don't recall reading about it causing birth defects but obviously you have. It's always so confusing because there always seems to be studies and websites showing both positive and negative studies about the same thing - whether it be Clomid Letrozole, or IVF options which is what I did most of my research about. Perhaps you already have a very heavy period and so it won't matter to you for implantation purposes if your periods are lighter on Clomid - after all I am sure there are some success stories on Clomid. But just wanted to give you my personal experience with Clomid.

RoseBud2015 Wed 11-Nov-15 20:31:13

Hi Both.

So I've had 3 cycles of clomid- 50mg did absolutely nothing for me. 100mg made me a crazy emotional mess but still no ov. 150mg clomid left me bed-bound! The side effects were unbelievably severe and I was told by my consultant that I must never take it again- it made me so so ill! I had severe visual disturbances and was told I was lucky that my eye sight returned to normal. Really scary stuff! I took 4 of the 5 days of tablets and did ov that cycle but it definitely wasn't worth the 7 days in bed really ill!!!

I did my own research and quickly discovered that the alternative to clomid, letrozole, was just a successful as clomid as a fertility drug in the USA. You're right Pink it isn't registered as a fertility drug in the UK but all of the evidence suggests that it can work well for women who don't respond well to clomid, and it has very little side effects in comparison to clomid......

so to me it's a no-brainer! Letrozole is the better option on paper. If I were you, I'd try that first and if you don't respond ask for clomid instead.

I'm CD1 today so start my first cycle of 2.5mg Letrozole on Friday. I have 2 cycles worth and if that doesn't work, we are moving onto IVF abroad. How about you Pink?

Shellster How have you found IVF? x

Shellster52 Thu 12-Nov-15 21:42:37

I actually did 11 IVF cycles in total Rose and finally had success in July 15. How did I find IVF? The physical stuff like the injections, scans and egg collections were fine. I did not have any side effects. Although, I had no side effects from Clomid either, so perhaps you will be more sensitive to the IVF meds than me. But it was the emotional torture that was unbearable for me. Going in for scans showing I wasn't responding well and rushing out to the car to have a cry, having egg collection after egg collection,, and each time hearing bad news on the phone about my embryos. Each failure felt like another nail in the coffin as I continued to age (was 38 when I found out final cycle was successful) and it felt more of a reality that this would never work for me.

I assume that your issue is that you are just not ovulating and I really hope Letrozole overcomes this issue for you Rose - without the side effects of Clomid? What is making you choose to go overseas for IVF. Would you not be entitled to the NHS funded rounds/s? Is it really that much cheaper than in England?

RoseBud2015 Fri 13-Nov-15 13:14:08

Hi Shellster Wow you have really been through it flowers You poor thing! You must be so so strong- and so so exhausted from it all. So glad to ended with pregnancy for you in the end smile How are you finding your pregnancy?

My DH has 2 DDs from a previous relationship so we aren't entitled to NHS IVF, and IVF in the Czech Republic is £1700 per cycle excluding meds and flights. So it's a lot cheaper than anything I've found in the UK with the same sort of success rates. Do you mind me asking where you had your IVF cycles and what your costs were?

I know that IVF will not be an 'easy option' and we will be investing a lot in it both financially and emotionally, but we are running out of options. Did you take time off when having IVF? How did your employer react? Sorry for all of the questions- I hope you don't mind x

Shellster52 Fri 13-Nov-15 20:04:43

I definitely don't mind the questions at all Rose. No need to apologise - in fact, a part of me feels bad coming on to the infertility threads because when I was going through IVF failures and there were others on here who had already had success, I just diddn't feel like I could relate to them and their felt advice was easy to dish out now that they had their baby. But I still feel more of a passion for women on this side of the positive test line and don't feel like I quite relate to other women who conceived easily and my pregnancy feels very different to theirs so I still enjoy chatting here if you guys don't mind!

I am actually in Australia. Four my first 4 cycles, I picked a new clinic that was advertising itself as cheap and it cost me about $3000. But as I did my research, I could see why they were cheaper and then moved on to another clinic at about $6500 per cycles. Not cheap!

I am a casual at my work so I can tell them I am not available certain days. They could usually fit in my scans around my work but occasionally they could not so I would take a day off, and then the only other days I needed off were egg collection and embryo transfer. My supervisor actually went through infertility herself so she was really understanding.

I used to chat to a lady on here who did a donor egg cycle in the Czech Rep. and she did all her scans in England and the Czech clinic just looked at their results. So perhaps your clinic also does this protocol and you would only need to go over for egg collection and embryo transfer if time off work is a concern for you? Is it rude to ask how old you are. Is the only known problem that you are not ovulating? Do you have PCOS or any reason for why you are not ovulating?

RoseBud2015 Sat 14-Nov-15 08:40:03

Hi Shellster Thanks for that- it's very interesting hearing others experiences. I can completely get why you feel more comfortable with the TTC ladies rather than the preg ladies- I think I would be the same.....I find the preg smugness of some women in RL who have never had any fertility worries so difficult to deal with, and I'm sure its the same on the preg threads. Do you mind be asking how you managed to afford so many cycles- do you and your DH have particularly good jobs, or did you take out loans? I'm not sure we could afford more than 3 cycles even if going abroad for treatment. When is your due date? Have you had any scans yet?

I'm 31 and my DH is 38 but we both have fertility issues. I have severe PCOS which was diagnosed at 15 years old. I have only ov'ed 3 times ever- all in the last 3 cycles (which coincides with taking the 150mg clomid which then got abandoned mid-cycle.) The only thing I can think is that the clomid somehow kick started my system?! I'm trying Femara this cycle mainly for the follicle tracking scans so that we can time DTD really well.
DH has low sperm count (8 million on first test, 14 million on second test) although we have just had his 3rd test back and its increased to 21 million per ml!!! We are so pleased- I've had him on tonnes of supplements for the last 6 months and changed his diet, and it seems to have had quite a dramatic impact! So in theory, after 15 months of TTC, we may now finally be in a position to be able to try naturally and actually have a realistic chance of conceiving. DH now wants to wait a few months for the IVF and see how we go with TTC naturally (and with the help of Femara for this cycle and next) but I'm in such a negative frame of mind now, I have almost convinced myself that this will not happen naturally for us and we should just plough ahead with the IVF.
I know I'm still young in the grand scheme of things but the waiting is torture, and I know the pressure of all this infertility is affecting me. I have distanced myself from so many of my friends and family, and heavily rely on DH to keep me sane- which I know isn't fair on him. WWYD? x

Shellster52 Sun 15-Nov-15 22:45:48

DH has a good job but is soooo bad with money. He is such a spender and all his spare time is spent on ebay or filling the garage with more expensive car parts and his credit card is always near maxed out. He was the diagnosed reason for our fertility issue with 100% abnormal sperm morphology. He is a real junk food eater - skips breakfast at home and opts for a pie and coffee from 7-11 near his work instead. Then there is an array of take away shops near his work which he can choose from for lunch (more wasted money!)

Meanwhile, I am a real saver and right into healthy home made meals. We are real opposites. So it was a real strain on our relationship when I was in so much emotional pain not being able to conceive while watching him refuse to change his diet and finding the supplements I gave him hidden around the house not taken! But DH does at least pay the mortgage and the bills for which I am grateful. So while my pay is ordinary for my job (I am a pathology collector), basically I just worked my butt off, saying yes to every shift my work offered me and put it all into IVF. For my last IVF cycle, I was about to turn 38 so didn't feel I had time to save again before another IVF cycle. So I got a two year interest free credit card and that funded my final cycle. I felt immense pressure. I knew that if it didn't work, by the time I had paid that off and could try again, my time would be up fertility wise and I also felt dread at the thought of having to pay off a credit card for the next year with no baby to show for it. And how would I live with the resentment I felt towards DH for not doing a thing to fix his sperm while my fertility declined and made me live with the emptiness I felt. Thankfully it worked.

So I am so glad to hear that your hubby sounds a lot more co-operative and has made diet changes and takes his supplements. But at the same time, I totally relate to the stress that you feel after 15 months of trying to conceive. I totally relate to distancing yourself from others. My DH is one of 7 children, so there 7 pregnancy announcements from his siblings in my 4 years of infertility. Some of his siblings don't even work and one was having an affair on his wife, so I resented them being able to reproduce all the more and would always come up with excuses not to attend family functions. So I understand your need to just get on with IVF if the Letrozole does not do it's job rather than fall deeper into a black hole with more failed cycles under your belt while trying naturally. I assume you've tried for the 3 cycles you've ovulated, and now another two cycles of Letrozole. So 5 cycles of trying naturally does feel like you've given it a shot. And the IVF cycle takes time to get rolling by the time you have an appointment and do any required preliminary tests anyway, so I would feel exactly as you do and just want to get on with things. It at least feels like you're doing something pro active instead of just waiting and worrying. That's how I felt anyway.

Blackpoollassy Tue 01-Dec-15 21:16:55

Letrozole is brilliant. Much better for me than clomid which I didn't respond to. Unfortunately I've now moved area and they will not prescribe it. Making me have ovarian drilling instead.
Do you mind me asking if it's a private practitioner who has prescribed it?
Oh and the birth defect thing is unproven p. Also the drug company make shed loads of money using it as a breast cancer drug so don't want to licence it for fertility....

TheClacksAreDown Tue 01-Dec-15 21:25:03

I've successfully used letrozole and it seemed a better option to me than clomid for a number of reasons. From memory it leaves the body in c48 hours so will be gone prior to ovulation. So hard to see immediately how birth defects would be caused.

I've only had it prescribed by a fertility clinic. I think most non fertility clinics won't prescribe as it is off licence use.

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