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  • "Beanie5" started this thread
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1

Wednesday, March 23rd 2011, 8:29pm

Advice needed re immunolgy testing and treatment

Hi

I have been through 3 fresh cycles and 5 FETs. I got a BFP with my second fresh cycle and the FET following that cycle. Both were early losses at 5 weeks. All other treatments were BFNs. My con has been very good changing the tx to try to get it to work. After the 2 early losses I had some blood clotting tests and chromosone test done. I have a slightly raised risk of clotting (can't remember which test this was), so since then have been taking clexane (25mg) and prednisolone (10mg) from transfer. I also have sjogrens which is an auto immune disease.

We want to try another fresh cycle but I feel that I should get the full immunolgy tests done first. I have read the info in this section and see that Dr Gorgy is the specialist to go to for the tests. Are there any other places that anyone can recommend? I understand that not many clinics support immunolgy testing. I know that my clinic don't do the tests but are happy to give me clexane and steroids. If I have the tests done and something shows up my understanding is that they would advise me on what drugs to take, at what stage in the treatment and will prescribe me the drugs. Does this mean that I would then be able to carry on tx at my existing clinic and just take the extra drugs as instructed by the immunolgy specialist or do I have to go to a special clinic to go through my tx cycle?

Any help, advise suggestions gratefully received. I live in Wiltshire and am currently going to the clinic in Bath.
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
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Thursday, March 24th 2011, 4:25am

Hi Beanie

We were in a similar place last year. I am the same age as you. Had done 5 cycles (3 fresh 2 fet) and never in all years ttc had a bfp.

We weren't willing to do any more cycles without immune tests. We decided to go see George at Care Nottingham. The best decision we ever made!!! I have just finished my first immune cycle which unfortunately did end with another bfn. But the tests showed a multitude of issues and George said not only was it hard for me to get pregnant some clotting issues meant it was dangerous (for me and baby) too if I wasn't on the right meds. All of it was easily treated with a concoction of meds. Intrallipids, Clexane, steroids and lots more.

The reason we went to Care came down to me deciding I would rather drive for a couple of hours than deal with a similar commute across London (Argc).

Good luck. It is an emotional, financial, physical rollercoaster we are on and the immune treatment really gave me a boost. I am just so relieved to finally have an explanation! The previous clinic just said bad luck try again each time - rubbish!!!!
6 cycles all BFN.
One last immune cycle - July 2011
06/12 - :girl:

Baby Isobel arrived on 16/04. Life is complete :hugs:

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Thursday, March 24th 2011, 5:32am

Hi Beanie5,
They have already found that you have a clotting disorder and you Jane some known immune issues so I would do the immunology tests. I don't know if your clinic will do an immune cycle as this type of tx Han not been properly trialled. You would have to ask them or move clinic. Some people with immunology issues can still conceive naturally and as I said most clinics don't do this type of treatment as there is not enough proper scientific evidence and trials. The immune protocol is more expensive. The tests only are £900. It is your decision ultimately.
Good luck babydust

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Thursday, March 24th 2011, 9:06am

Hi Beanie

I am going down the same route as you, looking into making an appt at the ARGC for immune testing. Have you read the book 'Is your body baby friendly' by Alan Beer? I bought it and started reading it yesterday and it's fascinating. It's all about immunology, infertility and IVF failure and specifically mentions Sjogrens disease. It will tell you all about the different forms of immune problems, and the treatments you use to combat them. It has really given me a lot of hope. It looks daunting, but it really easy to read, and I think I will feel much better knowing about the tests and drugs when i speak to a clinic.

Good luck with your tests, it's got to be better to know than not? Well that's how I feel.

j x


Me 35, DH 37 [zx151]
2 x ICSI :BFN:
1 x FET :BFN:
Nov 11 - 3rd ICSI (Immunology Cycle) :BFP: Please stay with us :pray:





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Thursday, March 24th 2011, 2:14pm

In your position Beanie I would definitely investigate immunology. As MAria says, there is no trial data confirming the effectiveness of any of the immune treatments, however, most of the drugs have very few side effects and I think it is something you need to try. In your position I would feel that I had to try every avenue I think.

CARE Nottingham, ARGC and Dr Gorgy are the clinics currently offering full immune protocols. Dr Gorgy is the only one who will work with other clinics. If you use CARE or ARGC you will need to have the whole cycle done by them.

It certainly can get very expensive. The Chicago tests cost about £900 and then treatments can be very expensive. A full immune cycle at ARGC cost me about £13k, but it does vary. I can certainly recommend ARGC as being very thorough but which clinic you go to probably depends most on where you live.

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Thursday, March 24th 2011, 3:45pm

Just supporting all that has been said above by Ruthie and Maria re: research etc.

It can indeed get quite expensive, CARE are a bit cheaper than ARGC and if you can get your own GP to prescribe things like clexane (expensive) and steroids (cheap), then this can dramatically reduce your drug bill. Sometimes distance is a consideration but I think when we start talking tx, it really is about the results!

Good Luck. xxx

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

  • "Beanie5" started this thread
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Sunday, March 27th 2011, 9:31pm

Hi Ladies

Thank you all for your help. I will have to look at where is going to be most suitable location wise. I'm not sure were ARGC are but I think CARE is too far away. London may be my best option, as I live near Swindon. I will start looking into this this week to at least make a start. Someone leant me Dr Beers book a while ago but I didn't read a lot of it at the time. I think I may get it and have a good read as it all sounds quite confusing, so I'm sure it will help to read it.

xx
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
MY DIARY

ruthie

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Sunday, March 27th 2011, 10:25pm

ARGC are in London, on Upper Wimpole St which is between Oxford Circus and Regent's Park tube stations.

xxx

ruthie

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Sunday, March 27th 2011, 10:25pm

Ooh, forgot to say, v easy journey from Paddington, it takes me about 10 min from there.

  • "Beanie5" started this thread
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Monday, March 28th 2011, 10:25pm

Thank you Ruthie

Am I right in understanding that if you go through Dr Gorgy and want to have the whole tx through him it doesn't all take place at his clinic, you have to go to 2 different places?

We are thinking that CARE in Northampton may be better for us as we can drive there rather than having to get a train into London. Will have to have a think about it. Have an appointment with my current clinic in Bath on Wednesday. I don't think that they will support us if we go for immunology testing and maybe it is just best to get it done all under one clinic. The thing that worries me is how much time I will need to take out of work to go to appointments. Bath is only about 50 minutes away whereas going into London or up to Northampton is probably going to double the time. How does everyone else deal with all the traveling and taking time out of work?

I guess it depends on what immunology issues you have but do you have to be monitored daily or every couple of days or is it less frequent than that?
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
MY DIARY

This post has been edited 1 times, last edit by "Beanie5" (Mar 28th 2011, 10:26pm)


ruthie

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Tuesday, March 29th 2011, 9:21am

Jenine saw Dr Gorgy and had a full cycle with him, with him doing all the stimms etc as well. However, he will work with other clinics, so if Bath supported you maybe Dr G could do your immunes and Bath could do EC/ET etc.. CARE and ARGC only do a full service so to speak.
I had to take 5 weeks off work for my ARGC fresh cycle as we live too far away and you have to be at the clinic for blood tests every day durign stimms, and scans every 3 days. We just moved to London and stayed with friends for the duration.
CARE don't monitor quite so heavily, I think bloods etc every 3 days or so. Brave Girl and Chatterbox are both at CARE so could fill you in.
In terms of the immunes, the testing isn't too horrendous. ARGC do immune bloods on about day 3 of stimms and then again once you get a BFP. As I say for our fresh cycle we were in London anyway, but I did 2 natural FETs with them and just travelled up for the immune testing, doing the round trip in a day. So, if Bath were happy to work with Dr Gorgy, you could probably get away with only a few London trips. Are you in Swindon, or did I totally imagine that?

  • "Beanie5" started this thread
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Wednesday, March 30th 2011, 8:13pm

Hi Ruthie

THanks for that. It doesn't sound too bad. I saw our con at Bath today and they will allow me to have tx there as long as Dr Gorgy prescribes whatever drugs are needed. I guess I would still need to go to Dr Gorgy for the blood tests.

I work in Swindon but live about 15 miles south of Swindon. We were thinking that we may be able to park at our friends in Ruslip and get the underground into London. THis would save some money and hopefully time. We will have to ask them if they are okay with this. I actually called and spoke briefly with Dr Gorgy today. I'm going to call back tomorrow I think to make an appointment to get the tests done. I looked at the website and it all looks very expensive. The ARGC looks cheaper I think.


I got a copy of the blood tests that I had about a year ago after my second failed BFP. I had the following. Not sure if any of these are part of the immunology tests;

Chromosone Analysis - Normal Femal Karyotype: 46,XX

Anti Cardiolopin Antibodies
Anti Cardiolipin IgG 6.6
Anti Cardiolipin IgM 15.7 - Slightly high as normal range is less than 15.1 (I've had this test done before and it was slightly high then as well)

Routine Coagulation Tests
APTT 29 seconds
Prothrombin Time 10.5 secons
INR 1.00 ration

Full Blood Count
All within range except for PCT which was low at 0.26 - normal range 0.37-0.47

Platlet count 217

Differential Absolute
Neutrophils 4.2
Lymphocytes 1.2 - low - normal range 1.5 - 4.5
Monocytes 0.90
Eosinophils 0.10
Basophils 0.1

Lupus Anticoagulant Screen
DRVVT 0.92 ration
Lupus Sensitive aptt = 29
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
MY DIARY

This post has been edited 1 times, last edit by "Beanie5" (Mar 30th 2011, 8:22pm)


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Wednesday, March 30th 2011, 9:01pm

The girls have all been really super helpful and answered really well, but I would just like to add that Dr Gorgy is VERY helpful if you need him to work with your clinic and it sounds like they are on board which is great! He is on Wimpole Street too if I remember correctly. Just don't have too many phone conversations with him as he's VERY hard to understand on the phone! Incredibly intelligent man who knows his stuff and WILL get your pregnant. Wishing you all the best of everything xxx

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Thursday, March 31st 2011, 6:54am

You may also wish to consider Mr Shehata/ Mr Gafar. they got me pregnant (so to speak!) with immune issues. They are about to open their own clinic in Epsom, Surrey (mid April).





5 - yes FIVE angels baby5 All early losses due to elevated NK cells.

1st IVF january 2011 resulted in our beautiful daughter born Oct 2011 bab10

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  • "Beanie5" started this thread
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Thursday, March 31st 2011, 8:21pm

Thanks girls for your help.

I actually booked an appointment with Dr Gorgy for Monday 18 April. We fly out on holiday that evening, so have to be up in London anyway that day. I think that we will go up again for our follow up as I have heard a lot of people saying that he is difficult to understand over the phone. I think we will see what the results are before deciding whether to have our tx in London or go back to Bath. I've read somewhere about people getting nurses to come to their house for certain txs. Is this to avoid having to travel to clinics or is it cheaper? Do all clinics allow this?
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
MY DIARY

ruthie

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Thursday, March 31st 2011, 8:28pm

Nurses come to the house to do intralipids usually and I think Healthcare at Home will do IVIG too. It's not because it's cheaper, but just to avoid annoying travel usually. The clinics can't really not allow it to be honest. It's the same with any drug, they advise you take it and they prescribe it. You can ask for a prescription to buy it elsewhere or you can get it through the clinic. With IVIG it's a bit iffy as there is more potential for adverse reactions (although these are rare). I have ILs at home as do lots of the other ladies on here and I'm sure Dr Gorgy would be fine with that if you end up needing ILs.

The blood tests you had below are the Level 1s. There are a few others that people sometimes do but they are the basics. Dr G will want to see those results as hopefully you won't need to repeat all of that lot which should help with the cost.

I doubt ARGC are cheaper either. Firstly you have to do the cycle with them and the cycle alone is more than most clinics. On their price list it looks competitive, and it is, but that only includes scans and EC/ET. A lot of clinics (like mine in Cornwall) don't do any bloods so that's the only cost you have. ARGC do bloods once and sometimes twice a day. I spent about £900 on blood tests alone during stimms! They also pretty much always do hysteroscopy which is another £1000. They aren't pricey for what they do, they just do a lot more than most clinics!

  • "Beanie5" started this thread
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Sunday, April 3rd 2011, 2:19pm

Thanks Ruthie this is really helpful.

Gosh £1000 for a hysterscopy. My clinic did mine on the NHS. They didn't do a biopsy, just had a quick look to see the the endometrium looked okay because my lining is always on the thin side.

For those of you who have been to see or are seeing Dr Gorgy, what can I expect on my first appointment/what do I need to bring with me? I will take the blood tests with me that I have previously had and I was planning on taking our file notes, which I'm going to get copied.
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
MY DIARY

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Monday, April 4th 2011, 2:34am

Beanie i have been to dr g 3 weeks ago and got all immunes done. It don't come cheap paid £1900 and have most of the results with my dh. Strangely enough I'm going back this morning(am on a night shift) to collect chlamydia test kits which we didn't pay for last time. Af is due now.
I found dr g easy to understand though u may need to do a bit of lip reading lol. The guy is fab and has agreed to give us prescripts even though we are cycling abroad,cape town. U need to prepare questions though as u don't have much time with him even though paying a fortune for his time. He will look at any files u bring but not in detail so point things quickly

Some of our results are back and indicative I will need humira due to high tnf. I'm glad lots came back abnormal and hope he fixs me before tx.
I hope u have gud experience with dr g and fire away if u have any questions.
[/url]

This post has been edited 1 times, last edit by "BABY DREAMS" (Apr 4th 2011, 2:37am)


  • "Beanie5" started this thread
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Monday, April 4th 2011, 6:51pm

Hi Baby Dreams

Thank you for the information. I will make sure that I am organised, so that we can get the most out of the appointment. £1900 was that for the immune tests and the appointment or was that for some screening tests as well?
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
MY DIARY

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