OHSS and puregon

[scooby]

Hi everyone.
Just wondering if anyone can shed some light on the OHSS thing. Im a little concerned as i have just started 150iu of puregon for an IVF cycle (my first). Last cycle i did IUI and was on 15iu and ended up with 5 follicles and when i have done cycles with clomid i had to cancel a few times due to over stimulation on 25mg. Do you think the 150iu might be too much for me, hadnt really given it much thought before now, but i really dont want to be overstimulated and not be able to complete the IVF? WOuld love to know what you think before i take it up with my FS. I also read that drinking heaps of water can stop OHSS is this true? Thanks girls

[Chez67]

Hi Scooby

Sorry, I rarely get across to this thread anymore but I noticed that no-one has replied to you so I thought I would give you some info on my experience.

Let me say up front that I haven't had OHSS but some of the ladies over in the LTAC thread have and they can probably give you more detailed advice than I can. I do know that if you have PCOS then you will tend towards OHSS. I am not sure of your history so don't know if this is relevant for you or not. The ladies also tell me that drinking Gatorade and warm wheat bags on the ab area helps with the OHSS. It certainly is something to be treated seriously and I would suggest that if you have any concerns at all you should call your clinic and speak to a nurse of your FS if they will talk to patients on the phone. Better to ask sooner than later to hopefully prevent it, or be more closely monitored, than have your cycle cancelled and end up in hosptial, which is both very disappointing and extremely painful I believe.

Take care of yourself and best of luck with your cycle.
xx

[butterfly_warrior]

Here I am... OHSS queen at your service. I missed this thread because it was the day of my EPU.

What Chez has said is correct. OHSS is painful and utterly awful. I've had it twice, the first time I battled on at home with my abdomen full of 5L of fluid and in agony. The second time, I couldn't stand the thought of going through it at home (and DH put his foot down) and I ended up spending a week in hospital and a month off work. And I wasn't quite as sick as the first time! Both times my clinic took me to EPU, but there was no transfer as I was just too sick. All embryos went to the freezer.

If you are concerned about being on a dose that is too high, speak up! At the very least, insist that they monitor you closely. My dosage of puregon is generally reduced after each blood test just to try to keep levels under control. We managed it this time, and I'm in line for a fresh transfer.

When it comes to things that you can do to avoid getting it - LOTS of water. 2-3L per day and a high protein diet. It's best if you can stick with low-carb and low-GI as well (particularly if you have PCOS). I saw during this last cycle that when I stuck to the low-carb, low-GI, high-protein thing, my levels were very well controlled. I had one big jump which scared the clinic, and also coincided with the day that I didn't watch what I ate quite so closely.

In short, OHSS is hell, but it's not the end of the world. Take care, and keep in close contact with your clinic if you are worried.

BW

[scooby]

Thanks sooo much girls for your replies, yeah i thought if no one could help here i would pop into LTAC for some help! I really appreciate you both coming over to give me some advise.
Thanks Chez i have been loading up on water and sitting with heat bags at night mainly because i am crampy already!
BW: so sorry you have to give me advise based on experience, it sound just awful what you have been thorugh. This is going to sound ridiculous, but i think i have PCOS, my fs just said to me has anyone ever mentioned polcystic ovaries to you and i replied "no" and he didnt say anymore and i didnt think to ask, but i know when i first started AC i had quite a few exsisting cysts before any stims and had extremely high estrogen levels, found in the last couple of years that i put on weight around my thighs and tummy where i never carried it before. I have been following your advise and i am on day 5 of stims and already feel quite crampy (like AF is about to come) and bloated, but i have bloods tomoro so will hopefully get some answers.
Thanks again girls really appreciate the advise

[butterfly_warrior]

The fluids are a great idea (and very easy to forget in this cold weather!), so you're in a great position right now. I do have to agree, it does sound like the dastardly PCOS has struck again... but if you know how to deal with it, you should still be ok. The good news is that the diet has helped me immensely and I'm sitting here on day three after EPU feeling great(ish) and with an embryo on board. The one thing I can really suggest is that if you are at all nervous, insist that the clinic gives you a blood test, even if they say you don't need it. It's the one thing I'd do differently if I had to go again.

Good luck, and all the best for OHSS avoidance. Let me know how you go.

BW

[scooby]

Paging BW to the LTTC thread
So sorry to bug you again but would really love your opnion as youve been there done that (unfortunately)
Just had BT results i am on my 6th day of stims and my estrogen was 3000 which they have said is too high for this stage, so BT and scan tomorrow and stims down to 125. Do you remember what your estrogenwas around this stage, is there any way at all of me stopping this from happening or is it too late do you think? I am really starting to hurt down there and look like im 5 monthes pregnant. Very frustrating. thanks again!!!

[butterfly_warrior]

Scooby, it really doesn't look good, I'm afraid.

For my last cycle, after 5 days @ 200IU puregon my E2 levels were around 1000. They said this was ideal.

For my second cycle, I had a level of 283 after 5 days @ 150IU puregon, which was nowhere near good enough! They increased my dosage to 300IU and 4 days later I was at 2834... in trouble.

For the thrid cycle, I had a complicated step-down cycle with starting at 300IU of puregon and dropping down every second day. My first blood test came in at 3000. This was bad.

It is good that they are decreasing your dosage of puregon.

In all honesty, I think the best you can hope for is to get through to collection and then have all embryos frozen and have a FET cycle later when you are recovered (or at least not going to put your life at risk by becoming pregnant). It really is up to your clinic, and will depend on how your response changes from here. Some (like mine) like to take you to collection and freeze, which is forward progress at least. Others will prefer to cancel the cycle, allow levels to drop and then start again. It's such a challenge to get me through without hyperstimulation, that even after having gone through it twice, I would probably still prefer to keep moving forward and go for the collection and freeze all.

There are some things you can do in order to help yourself at this point. Drinking lots of water is essential. It will help keep everything flushing through your system. The next bit will sound crazy (and I thought my FS was mad for insisting that this was the problem), but it really does work, and is probably the most important thing you can do. EAT HEALTHY. We're talking low GI, low carb, low fat. Focus on eating protein. To quote from my FS - no white rice, no pasta, no tropical fruit (pineapple, banana, mango, rockmelon, watermelon all OUT), no cheese, no biscuits, no cake, no chocolate, no lollies, no ice cream, no fried foods. Yoghurt is good (low fat kind), and stick to only two slices of bread per day.

I've just had another member quizzing me on stuff like this, and I shall quote from the PM I sent her to demonstrate just how much the diet factor is important:

After five days I was around 1000 (has previously been 2000 and 3000 with previous cycles), two days later I'd got to 1600, and at that point assumed everything was fine, everything was under control, I wasn't going to hyperstimulate and the diet was all an evil trick to make the weeks of the cycle thoroughly miserable. I ate a hamburger and chips for lunch and despite another drop in the dosage of my puregon my levels the very next day had hit 5200. Another dosage drop, back to the diet and the following day I was at 8000. I triggered a day or so later.

Everything was restrained, calm, under control... until I slipped up on the diet. At that point, things could have got scarily out of control, but in going straight back to eating properly I managed to get things back under control and save the cycle. I can't say that it will save yours, but it may just help you stay at least tolerably comfortable. It may not even help at all for this cycle, but it may be something to keep in mind for your next one.

The last things that will help - rest. Kind of obvious, but if you can move as little as possible you are going to be more comfortable. Take time off work if necessary.

And the hardest - DON'T STRESS! During my last cycle when I went into a blind panic at jumping from 1600 to 5200 over night, I freaked out a little on the phone to the nurse. I was instructed to stay calm as the stress would raise cortisol levels and the cortisol would make the estrogen even higher. I've got no idea if it's actually true, but panicking isn't going to change where you are right now. Stay calm, trust the clinic, and see just where things go tomorrow.

Good luck, and I hope I haven't freaked you out even more. Feel free to keep picking my brain... my experiences may as well at least be useful for someone other than me!

BW

[scooby]

BW i can thank you enough im actually not freaking out too much, to be honest i just dont think its worth it after all the drama with my ectopic i realise it doesnt make things any better, what is going to happen will happen. I guess im a little sad and annoyed with myself that i didnt think of the dosage thing sooner. Again thank you so much for your support and putting up with me bugging you, just wanted to get things straight in my head. Your a legend thanks. Hope your TWW is going well and that this is your BFP for 08

[*Paula*]

BW you are so insperational and full of knowledge. Thanks a million!

I will be printing out your DO NOT EATS and sticking to it from day 1 of AF.

[scooby]

Just thought id update todays BT were 4200 and the us showed only 13 follicles, so it all systems go at this stage. lets hope it stays that way. But for reference i have avoided carbs after cooking pasta for dinner last night i ended up having vegie soup and tuna and have been drinking tonnes of water and gateroade. Thanks you sooo much BW not sure i would be in this postion if i hadnt taken your advise.

[butterfly_warrior]

Good to hear, Scooby. Lets hope it all stays under control from here. You have the advantage of being at a much lower dosage than me when my levels hit 3000. They can't cut the dose of puregon back in one huge hit, they need to do it gradually.

BW