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Discussion Starter · #1 ·
Hi,

I'm new to this site and have just had a failed IVF cycle with immune therapy - which cost far more than I ever imagined it would  - and I'm running out of money.  Since I may be having some frozen embryo transfers in a few months time (with embryos created when i was quite a lot younger) I'm trying to get some idea of the maximum and minimum possible costs of immune therapy during pregnancy.  Please can anyone help?

For example, which Chicago blood tests (i.e. the fiercely expensive ones) did you have during pregnancy, and how many of each in total before your baby was born?

Also, for example, how many times in total did you have to have IVIg (and how much did each one cost - since there are different doses); how many times did you have to have intralipid;  and how many times did you have to have LIT, before your baby was born?

I was also wondering how many scans you had to have done privately because of the immune issues?

If there are other substantial costs that I haven't thought about, or lots of little things that cost quite a lot when they're all added up, please could you let me know?

The frozen embryos are my last chance so I don't want to cut any corners.  I want to give them the best chance that I possibly can.

If anyone could help me with this question I'd be so enormously grateful.

I've got highly elevated TNF alpha : IL 10 ratios (for which I had 4 injections of humira and 2 intralipids because of immune flares caused by the humira).  With regards to natural killer cells I originally only had abnormal levels of CD19+ and CD5+ cells, but after the humira I had raised numbers of CD56 cells as well.  I've also had LIT twice, 4 weeks apart.

One other thing I was wondering was whether anyone's G.P. has prescribed any of the drugs for them on the NHS?

Thank you for reading this, and thank you for trying to help.

Wishing you lots of luck with your endeavours,

MillyMollyM
 

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Hi MMM,

I can't help with all the questions below as my immune issues are slightly different than yours, but here's my experience in the hope that it helps somewhat:

From pre transfer I was on 25mg prednisolone daily until 12-14 weeks (this is relatively cheap though so not a major outlay), clexane 40mg daily until 31 weeks (between £150-200 per month depending on which pharmacy I got it from. Consultant at hospital is now prescribing - from 20 wks - but until then I was paying for it myself as my GP will not do scripts for any IVF related medication)
I was also on gestone (injectable progesterone) until 14 weeks which is approx £4.50 per day so again all adds up
I'm also on 75mg aspirin but cost of that is negligable vs everything else

I had one IVIG and one IL before transfer. I have raised NK cells (50:1, CD56 and CD19/3)...

On getting my BFP I paid for 2 HCG tests privately (GP would not do and as had tx abroad did not have a clinic to do them) - this cost £175 via a private GP
I then had IVIG immediately
I had a scan at 6 weeks and had another IVIG that day once heartbeats were seen on the scan

I had more scans then at 7, 8, 10, 11 weeks - you may not need so many but I had bleeding from a subchrorionic hematoma and it's a twin pregnancy so I was being ultra cautious with the scans/monitoring
Had NHS scans at 12 and 20 weeks, paid for private scan at 16wks but this was not essential, just for my own peace of mind (and curiosity re sex of the babies!)
Am now scanned on NHS every 4 wks because it's a twin pregnancy so no further expense for me in terms of scans

I have had IVIG every 3ish weeks since the 6 week scan. I had one lot of IL rather than IVIG but then levels rose again so had to go back to IVIG

I am now 24 wks pg and I have had in total since BFP 6x IVIG and 1xIL, and I expect to need at least one more IVIG, if not 2 to get me to 28/30weeks at which point no more should be needed

IVIG costs 1350 (once I needed an extra dose and paid 1600), IL 350 so in total I've spent approx £9000 on drips. More or less every time I have had the drip I have also needed to pay a consultation fee to discuss the blood results/what drip is needed - so that's £120 each time - a further £1200 approx

I have then needed to have NK cell re-tests done regularly to check levels and see what drip is needed. These cost £325 and I have needed them pretty much after every drip - so let's say 6-8 times over the course of the pregnancy - another max £2500 ish

I have resisted adding it all up into one sum to date because it's too scary....but you can see it all comes to quite considerable cost. My levels have fluctuated wildly and I seem to have been quite unlikely in needing such regular drips. Plus I had the bleeding and twins complication which meant more early scans etc.

I do not, fortunately, need LIT/Humira so can't comment on those I'm afraid

Other costs (not significant but they do add up) - travel costs to get to London for the consults/blood tests/drips etc - costs me approx £45 each time for train/parking which adds up over the course of the pregnancy. Vitamins etc - again not significant cost but adds up - if you are on clexane you need to take extra calcium. Then there are multi-vits etc...

I am having my immunes through Dr Gorgy - costs may vary at other clinics

I'd say a rough estimate of everything (all drugs throughout, all drips, consults, blood tests, travel etc) would come in not much under £20K - which is quite terrifying when you see it written down like that but of course it's been over a period of time and I have relied on my credit card quite heavily!

Hope this helps, best of luck
Suitcase
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have you seen the pregnancy section of the immune faq (under P)?  i've tried to go some way to answering that sort of question there - but i don't think you will find a 'typical' cost - it depends enormously on what your initial retests show, what approach your doc takes e.g., whether they tend to stop drips at 12 weeks, 22 weeks or 31 - and whether they do retests or 'bank on things being ok', and whether you go for ivig, ils or both - the same on scans - if things are going well immune wise you might not need many extra - and if your ob accepts you are high risk e.g., due to health,age etc - they might be prepared to give you regular scans - at least later in pg.

once you are pg some gps are prepared to px routine meds like pred, clex and gestone but its less common before you are pg, some refuse altogether, and its almost unheard of to get expensive stuff like humira (unless you have arthritis or crohn's), ils or ivig

also see the section under C for costs
 

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Discussion Starter · #4 ·
Hi Agate and Suitcase!

I'm writing this hoping it'll come up as part of the thread, if that's the correct term.  Thank you so much for your reply Agate.  Sorry I haven't thanked you before.

Thank you Suitcase of Dreams for your last message.  It was lovely to hear from you again.  How are things? I shall be so thrilled when I hear about your twins safe arrival.  I hope everything's been going well this last week and that you're not getting too tired with Christmas preparations.  It must be so lovely knowing that next Christmas you'll be enjoying the festive season with your own children! !  I dream of that...

I'm seeing Dr Gorgy this week, for the first time since the failed IVF and can't say I'm looking forward to it...  At my age and after my ovary's last performance I don't expect it to be very cheering. 

I don't know what he'll say about the anticipated costs of a pregnancy - should I be lucky enough to eventually have one.  I certainly went into the IVF without having the faintest idea how much I was going to end up spending...

I hope all is well with you both,

Bye for now,

MMM
 
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