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Discussion Starter · #1 ·
Hi everyone

We are just about to start a cycle with immune treatment, following three failed cycles in 2010. After our second cycle, I started investigating immune tx, and a "basic" NK test done which resulted in my local clinic offering some immune treatment for my frozen cycle.

After our FET, I had the full complement of L1 and L2 tests which show blood clotting tendancies (Factor V Leiden and PAI-P) as well as high TNFa and CD19+/CD5+. We have just started TX under George Nduwke at CARE where I'm being treated with a cocktail of intralipids, steriods, clexane and aspirin - my first intralipid treatment will be around Jan 19th and all being well, EC will be around the third week of February. I'm ^pray^ ^pray^ that we've now found the answer to what is going wrong in our previous cycles.

I wondered if anyone else is starting treatment in the next few weeks? It would be great to hear from you.

Sending you all
for our BFPs in 2011

Lulu
xxx
 

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Lulu,

I didn't want to just read and run... I'll be cycling Feb (hopefully, after my TNFa re-test).  We've recently found out I have immune issues too.  We're so hoping that this has been the reason for our BFNs.  All the very best for your upcoming cycle  ^pray^

Jo
x
 

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Hi Lulu and Jo

I will be cycling soon too- aiming for ET in the last week of Jan. This will be my fifth cycle the last one 2 years ago resulted in my DS.  I have taken humira and have been down regging on the pill, just heard today that I have managed to shifted the dreaded hidden C.  Hopefully the immune tx will work it's magic for you 

Wishing everyone a successful 2011! ^reiki^


Bx
 

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Hi Beattie:  Well done you in getting rid of the Hidden C!  That's quite a course of antibiotics to go through.  I tested negative for that, although it just reinforces my belief that nothing can grow in the barren land which is my uterus!  I've been on humira too and have my re-test next week with Dr Gorgy.  Fx my TNFa is down, so that I can start DRing in Feb.  What cocktail of drugs will you be on?  And well done on a gorgeous DS; just goes to show that all this will be worth it in the end. 

It looks like you girls are a month or so ahead of me but I may just follow this thread, to go through tx vicariously with you!

Roll on 2011 and BFPs for us all :)
 

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Hi Everyone!


I will be cycling in Jan/feb too (Hi Lulu  ^hugme^ thanks for starting this thread. So fingers crossed for us all to be successful with getting our healthy BFPs in 2011 ^reiki^


I begin downregging on 6th Jan, on the long protocol with immunes.






S  xx
 

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Hi ladies, I will start down reg'ing on the 9th of Jan aiming for EC first week of Feb? I have an appt with the clinic on the 4th of Jan to discuss protocol...

My clinic have advised me not to take Clexane until 24 hours after EC due to the risk of bleeding but Dr G says to start Clexane on CD7... think I am going to go with my clinic as I don't have clotting issues, have you all had the same advice?!?!

Hopefully 2011 will be the year we have all dreamt of! ^reiki^

Bobbyx
 

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bobby: see the clexane section in the faq - if you are having IVF you normally need to pause the clexane from trigger day until the day after EC
 

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Bobby:  Dr G recommended I have clexane from stimming too, although my clinic has said to take from the day after EC due to risk of bleeding, like yours.  Given that I seem to go to blasts, there's still 5 days for the clexane to get active (and I understand it works immediately), so I'm going with my clinic's recommendation. 
 

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my take on it is that having clexane early on is definitely worth doing because clexane can only prevent clots from forming - it can't 'bust' clots once they form - so I really would try and take it for a few days before trigger.  then stop it and start again after EC.  if you have a lining that is already full of microclots before you even start, you aren't giving yourself quite the best chance?
 

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I followed Dr G's advice on clexane this time around (i.e. from day 5-7 of stimms, stop between trigger and EC and then restart it as Agate has said) and it worked for me if that's of any use.....  Personlly I'd recommend following Dr G's advice on this one.  My other clinic were fine with it too once I stopped it in between.
 

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Discussion Starter · #11 ·
Hi everyone, it's great to hear from you all, thanks for replying!

My meds arrived yesterday, I'm feeling rather overwhelmed by the quantities of drugs. Does anyone else feel both excited and terrified when they come through? I bruised really badly with clexane last time around and on an increased dose this time around, so really not looking forward to jabbing with both stims and clexane! (Bobby and Jo - I'm with Mr Ndukwe, who's told me to start the clexane 2 days after EC, though conversely Agate's argument looks pretty convincing to me too). I just wish the wider infertility medics would get on board with acccepting that immune issues can cause problems with carrying a baby successfully to term - it just seems so obvious that if the immune system isn't working "properly" that our embies aren't going to stand a chance!

Wishing you all a very Happy New Year and a fantastic 2011. Sammi, I hope you had a great holiday and I'm looking forward to getting to know you all over the coming weeks.
love
lulu
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Lulu:  That's exactly how I feel when the drugs arrive... both overwhelmed yet excited.  The feeling that 'wins' is the one that I'm actually doing something towards ttc; bring it on! 

Agate:  I agree with Lulu that the argument re clots and clexane is a pretty compelling one when building the lining.  Although I'm MTHFR homozygous, I've never had a clot in my AF, in fact it's fairly thin (sorry, TMI!), and so had never thought of this. 

Jujube:  Thanks for that.  Maybe I'll follow what Dr G says after all.  It's so difficult to make decisions when you get contradicting advice from consultants  :-\

All:  A very happy New Year to you all!
 

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It's very hard to know what to do re the Clexane. Agate, just re-read the FAQs and I do think that the argument for taking it pre EC is very strong and could make the difference...but my Consultant was very convincing when he said about the risks... I also bruise very easily, would that be a consideration? ...

Jujube, thanks for that, maybe the best plan would be to take it from day 6 of stimms for 4 days but stop at 10/11 days - just before it seems as though the clinic will be suggesting trigger? Better some than none?

Lulu, this is my first tx and will get my prescription on Tuesday... I can imagine it will be pretty overwhelming to get everything at once but exciting! Do you know if any of the meds need to be refridgerated or can I get the meds delivered to work?

Another thing I wondered, Dr G has written the prescription for 9 weeks worth of Clexane but I wondered whether I could ask Central Healthcare just to give me 2 weeks worth and then the rest in a separate delivery, in case I am allergic to it (I have a lot of allergies to meds  :()- it's too expensive to take the risk of bulk ordering, does anyone know if they would do this?

It's great 'chatting' with people that are going along the same process at the same time! Got the 3D saline scan on Tuesday, can't wait to officially start the process next week ...all being well...  ^pray^  :)
 

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Jo11 - I never had any clots in my AF either and wasn't sure of Dr G's logic (though Agate has explained it really well above).  However, I decided to go with Dr G on this one and he turned out to be right.....  intralipids and clexane were the main things I did differently this time around.  I met Dr G again yesterday to have a scan and talk through how long I would be on each of the meds - he now firmly believes my issue is clotting and that I should stay on clexane all the way to 6 weeks post delivery (assuming I get that far!).  Dr T at the Lister isn't so aggressive on clotting - in fact he never did a thrombophilia panel with me.....  I'm still frustrated at him for missing that, because if he had tested for it earlier, maybe I wouldn't have had to go through two failed cycles.  I just don't think Dr T pays enough attention to the clotting issue and whilst he does a lot of research on NKs, I think he's missing out on some of the basics in respect of clotting.

The difference is about 5 extra days of clexane (no more than £30).  The downside is some additional bruising and having to keep up the injections (I'm still trying to sort out an NHS prescription in that respect!).  From my viewpoint though, those downsides are a very small price to pay for a successful result. 

I'm not sure about the bleeding issue - perhaps Agate can comment further..... I had my last clexane injection on the morning of my trigger (which was about 11pm that night) and I restarted the day after egg collection.  I didn't experience any bleeding at all during those few days or immediately afterwards.

BobbySuccess - I was really interested to see in your signature about feeling that it worked and then losing all sensation.  This also happened me with every assisted cycle I went through - at about 10dpo, I would lose all sensation that it was working (high temp, very tenders breasts, unusual cramping - not AF - just different).  I told all the consultants I went to see that it felt it was working, but that they embryo just wasn't sticking properly.  I was convinced there was some sort of clotting issue but it wasn't found until a couple of months before this last cycle.  For this reason, I'd strongly encourage you to follow Dr G's advice on clexane..... no harm ordering two weeks worth of clexane and see how you go.  You might need two separate prescriptions though I'm not sure?

Hope this helps....

Jujube
 

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Jujube: Many thanks for your eloquent response; that's decided, clexane pre-EC for me. And I've never bled post-EC anyway so I'm not terribly worried about this point.

Bobby: I play around with the amounts on the scripts all the time; usually I ask for less of certain drugs and can get additional prescriptions from my clinic as necessary. I've not heard of anyone being allergic to clexane but you may be, given that it's animal derived. Just to warn though, it does sting and bruise!
 

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Jujube said:
I'm not sure about the bleeding issue - perhaps Agate can comment further..... I had my last clexane injection on the morning of my trigger (which was about 11pm that night) and I restarted the day after egg collection. I didn't experience any bleeding at all during those few days or immediately afterwards.
its standard procedure that for any planned surgery you stop clexane for a brief time e.g., you normally stop it the day before a planned C section etc (and resume the day after) - plus, for EC they don't want you to bleed too much when they do the needle aspiration to get out the eggs as it makes it more difficult for them if there is a lot of blood.

My understanding is that the immune docs like Dr G and Beer feel/felt that having clexane from, say, implantation or from BFP would boost your chances by reducing the likelihood of microclots in the lining (which would 'starve' the embryo of nutrition and oxygen), but that having it right from when the lining is starting to thicken (before ovulation) would boost your chances more because it would prevent microclots right from the start.

Also, we are not necessarily talking about clots that are big enough to see. the blood vessels in the lining are tiny things, so anything that blocks them will 'starve' the lining/embryo - even clots that are only a too small to see.
 

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Hi

I'm cycling during Jan/Feb. I start stims on SP on 19th Jan, then travel to South Africa on 23rd for tx. I'll be using Intralipid/steriods/clexane/aspirin/Vit B12/ and extra strength Folic Acid.

This will be our 4th fresh cycle, hoping this is the one!

Look forward to having some cycle buddies


Emma x
 

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Hi, can I join you all,

I'm having a donor embryo's at the end of Jan, after 2 failed cycles and 4 m/c I was tested by Dr G and several issues found.

I have been treated for hidden C and will be taking clexane, intrallipids, prednisilone and 800mcg folic acid.
I have decided against retesting for hidden C and against Humira, hoping the AB's and Intrallipids will make the difference, I have had a year off treatment and just need to get started again.

R x
 

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Discussion Starter · #19 ·
Hi everyone

Sorry - I started this thread and then went awol!

I hope everyone is doing ok, I've just started taking norethisterone to bring on a bleed (doing the short protocol), and on Wednesday I am having my first intralipids infusion. The meds arrived at the weekend, and (stupidly) I opened up the box to take a look!! I'm not sure what it is about the drip bags which has scared the living daylights out of me!!! I think it's one of those intellect vs emotions things - intellectually I know that a bit of egg protein and soya oil can really be that bad!!


Loop - hope you found this thread and that AF starts soon so you can get going. What meds are you on?

Roo - so sorry to hear you've been through the mill with tx, I am  ^pray^  that this cycle will be the one for us all.

MrsYG - good luck with stimms! What made you choose SA for tx? (I hope you don't mind me asking!)

Hope everyone else is ok, not sure who's still looking at this thread, but it would be great if we can be cycle buddies. It's my first immune tx so feeling a little overwhelmed by it all

lots of love
Lulu
xxx

 

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Ladies,

I'll be bowing out of this thread as I won't be cycling now 'til who-knows-when as my Cytokine re-test showed my TH1 has increased :( Just waiting on a call back from Dr Gorgy re what's next.

I do wish you all, all the very best of luck though.

Jo
x
 
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