[LW1211]

Hi ladies!

I was hoping to get some feedback on those that are experienced IVF-ers..... I have heard some real negative side effects from Lupron. I am extremely sensitive to medications that have a CNS effect. My doc wants to start me on Lupron for 10-12 days before Gonal. Among my research I found a doctor at NYU Fertility Center Dr. Licciardi who does not use much Lupron anymore and uses Ganilrex or Cetrotide. Are these different protocalls for those with certain conditions like PCOS?? Are there less side effects with Ganilrex?

Also, I am very nervous because on just 50mg of Clomid I had giant cysts and was hospitalized, so I want to be on the protocall that would obviously cause less of a risk for OHSS too.

So I don't know what to do and I feel like I need to be my own advocate because my doc wants to put me on Lupron and a regular dose of stims. So I guess I am concerned 1)-about the side effects of the meds esp. Lupron and 2)-how to prevent OHSS with my reaction to Clomid

Thanks so much, its so frustrating sometimes because doctors and there staff think they know whats best but then you end up with negative reactions.

Thanks for all your responses I really appreciate it.

LW

Me-31 Multiple problems
DH-32 mod low count

TTC 2007
1st Clomid failed IUI
2nd Clomid hospitalized with cyst and hydro

[alyaly]

Hi
For someone with a risk of ohss, lupron is used more often. The side effects of lupron were not much for me but I have heard they can be difficult for others but then one also is less likely to end up with ohss with lupron....atleast thats what my RE said to me.

[LW1211]

Thanks so much! Before I came to this forum I though I knew a lot about about IVF....there is soooo much more to learn and a lot of experienced ladies on here!

I really appreciate your insight and wish you this best in this process.

Best

Me-31 multiple problems
DH-mod low count

TTC 2007
1st round Clomid and failed IUI
2nd round Clomid hospitalized with cyst and hydro

[Ghost]

Originally Posted by LW1211

Hi ladies!

I was hoping to get some feedback on those that are experienced IVF-ers..... I have heard some real negative side effects from Lupron. I am extremely sensitive to medications that have a CNS effect. My doc wants to start me on Lupron for 10-12 days before Gonal. Among my research I found a doctor at NYU Fertility Center Dr. Licciardi who does not use much Lupron anymore and uses Ganilrex or Cetrotide. Are these different protocalls for those with certain conditions like PCOS?? Are there less side effects with Ganilrex?

Also, I am very nervous because on just 50mg of Clomid I had giant cysts and was hospitalized, so I want to be on the protocall that would obviously cause less of a risk for OHSS too.

So I don't know what to do and I feel like I need to be my own advocate because my doc wants to put me on Lupron and a regular dose of stims. So I guess I am concerned 1)-about the side effects of the meds esp. Lupron and 2)-how to prevent OHSS with my reaction to Clomid

Ganirelix or Cetrotide are great choices if you want to avoid OHSS. With them, you have the option of using a single dose of Lupron for the trigger. If you do that, serious OHSS will not occur. Mild cases may still be possible.

If you use Lupron for down regulation, you must be on it for a much longer time (more injections, more side effects) and you are stuck with hCG as the only practical option for the trigger. You cannot trigger with Lupron if you are already using it for down regulation. With hCG you risk OHSS.

On the plus side, Lupron is much cheaper than the antagonists (Ganirelix and Cetrotide). The difference adds up to about $400 per cycle.

[LW1211]

Wow, thank you for that info! That is what I have found in my research. I was getting ready to do this with a local doctor in my area but with the multiple problems and my sensitivity to these meds I feel like I owe it to myself to answer these questions first. Thank you for providing me with your insight, I have scheduled appt with the NYU fertility center and they seem to agree with those protocalls over Lupron and they also see very complex cases, I hoping to get some more guidance there before I make a decision to do this in a January cycle!

Thank you so much, I am really glad I asked this question, I was starting to doubt myself!

Best-LW

[Ghost]

Originally Posted by LW1211

Wow, thank you for that info! That is what I have found in my research. I was getting ready to do this with a local doctor in my area but with the multiple problems and my sensitivity to these meds I feel like I owe it to myself to answer these questions first. Thank you for providing me with your insight, I have scheduled appt with the NYU fertility center and they seem to agree with those protocalls over Lupron and they also see very complex cases, I hoping to get some more guidance there before I make a decision to do this in a January cycle!

Thank you so much, I am really glad I asked this question, I was starting to doubt myself!

Best-LW

If you are a high responder and serious about avoiding OHSS, you might check out the University of Connecticut. They have published what is easily the safest and best system for that. I have no affiliation with them, by the way.

[bino]

Originally Posted by LW1211

Wow, thank you for that info! That is what I have found in my research. I was getting ready to do this with a local doctor in my area but with the multiple problems and my sensitivity to these meds I feel like I owe it to myself to answer these questions first. Thank you for providing me with your insight, I have scheduled appt with the NYU fertility center and they seem to agree with those protocalls over Lupron and they also see very complex cases, I hoping to get some more guidance there before I make a decision to do this in a January cycle!

Thank you so much, I am really glad I asked this question, I was starting to doubt myself!

Best-LW

I applaud you for making the effort to be well informed! It is soooo important to take control of your protocol and fully understand what the RE is doing and WHY. I learned that lesson the 'hard way'.

Hoooray for you!!!

[LW1211]

Hi there,

Thank you again Ghost, I will look into the University of Conneticut and bring my findings to NYU fertility and see what their protocall is for this issue.

Bino, we have very similar issues, I had a laproscopy for massive pelvic adhesions in 2006. Thought everything was fine until my second round of clomid and I developed a hydro, they don't want to operate for the risk of developing more adhesions. Oh and my mock ET failed because my cervix is scared so they are considering doing the ET under anethesia. I also am higher for OHSS, so I have a boat load of issues....ours do look somewhat similar.

That is why I am considering NYU, child magazine voted them in the top 5 in the country for success rates and they are a center that takes on the complicated cases and doesn't turn them down to increase their numbers. Bino, what have your docs told you about your issues, my first center basically didn't even want me, nice.

Thanks again ladies!

Best, LW

Me-31 multiple problems
DH-mod low count
husky/lab mix-the love of my life!

TTC 2007
1st round clomid failed IUI
2nd round clomid hospitalized giant cysts

[bino]

Originally Posted by LW1211

Bino, we have very similar issues, I had a laproscopy for massive pelvic adhesions in 2006. Thought everything was fine until my second round of clomid and I developed a hydro, they don't want to operate for the risk of developing more adhesions. Oh and my mock ET failed because my cervix is scared so they are considering doing the ET under anethesia. I also am higher for OHSS, so I have a boat load of issues....ours do look somewhat similar.

That is why I am considering NYU, child magazine voted them in the top 5 in the country for success rates and they are a center that takes on the complicated cases and doesn't turn them down to increase their numbers. Bino, what have your docs told you about your issues, my first center basically didn't even want me, nice.

My lap proceedure started b/c they saw a massive hydrosalphynx. They found the adhesions once they got in there. OB did the surgery and sd "it's severe, I did all I could, but it won't last for long." That's when I knew it was only a matter of time before the other tube got blocked. A year later, no tubes. But that's just the obvious stuff! I went to first RE, who openly called me "old" at 37. So much for the societal belief that you can have a baby over 40 now!

Anyway, he put me on an MDL protocol; and I stimmed in 5 days. Even though that is the wrong protocol for me, it did prove that I'm not too old to make eggs! Then we were able to begin to have conversations about what might have happened on implant. That led to a slew of other conversations.

The bottom line is this. I do not accept "unexplained" infertility. I think many RE's treat the symptoms - not being pregnant, or obvious structural issues like tubes not working. That's like treating heart disease w/o treating the underlying issue causing it. Sometimes that is environmental (diet), sometimes genetic....

The bottom line is that your fertility is 'structural' from the waste down, but it is also rooted in the endocrine functions of your body (which are VERY complex). But as patients and consumers we need to have a 10,000 foot understanding of the endocrine system to truly take charge of our situation. So the OHSS, that starts in the endocrines.... why does your body react that way. Probably higher androgens count, whether that's natural (genetic), or you have lots of follicles.

This epiphany for me came when I was researching Guillain Barre Syndrome - an autoimmune disorder I contracted when I was 18 from a vaccination. I stumbled upon the fact that this syndrome hit also affected some of the genetic markers in the ovaries. Of which my RE did not know.

So, I advocate to women to take the initiative, and control back that they feel they've lost by doing plenty of research to understand their bodies, and to advocate for themselves with their RE's.

The fact that NYU takes on "complicated" cases leads me to believe that they are open minded to the idea that infertility is about more than 'structural' issues like bad tubes. I mean, it makes sense, look at how many women state their condition is "unexplained".

So yes, first RE treated me like a number....37 to be exact. This RE is open minded to infertility being about more than just that number (now 38). Too many of us blindly accept what they say, without understanding why they are doing what they are doing. I actually influenced my RE to change my protocol (on this cycle) b/c of information I found about the drugs, and their affect on my particular condition PCOS.

Like for example, if you get OHSS.... are you PCOS, or PCO-like? It took me until 38 to get that diagnosis despite years of telling my OB's the symptoms. I think that would be a big one for you to have answered. And if you were on clomid b/c you are anovulatory, the finger could point to PCOS. There are certain IVF protocols/meds w/ PCOS you'll be smart to avoid.

Anyways, I'm blathering on. I just want you to know I'm so proud of you for being so pro-active!!!!