You are not logged in.


Unread posts

Dear visitor, welcome to FertilityZone . If this is your first visit here, please read the Help. It explains in detail how this page works. To use all features of this page, you should consider registering. Please use the registration form, to register here or read more information about the registration process. If you are already registered, please login here.

  • "Blondie" started this thread

Posts: 2,643

Reg: Feb 28th 2007

Location: Surrey

Children: Not yet

  • Send private message

1

Tuesday, August 5th 2008, 2:15pm

Results of Immune Tests

Hi Everyone

Well we had our consultation with Dr Stricker from the Alan Beer Centre on Friday after a very long 2ww after receiving all our test results.

I have typed some information up on the tests they offer with some basic explanations and just waiting for them to be posted up on here so people can have a read and understand it a bit better.

I will try to keep it simple and if anyone has any questions just fire away, I am an expert on this!

I have several immune issues. In the doctors words "your immune system is working as it should do, very robust, however it is not behaving as it should during pregnancy. Your body believes that it is done reproducing and therefore any pregnancy that takes place it attacks thinking it is fighting infection and therefore the fetus is killed"

From the test results and all my reading I expected there to be a compatibility problem with my husband as we share 3 out of 4 DQ Alpha numbers / antigens, however I am told that this is not a problem. If it was a problem then it would explain why I have the issues that I have as they would be in response to this, but no I have these issues, For most of them I do not know why or how I got / have them and basically without treatment my chances of having a successfull pregnancy are around 10% according to the Beer Centre. With treatment it goes upto 70%.

I am gobsmacked at how many issues I have and the amount of drugs I will need to take to have a shot as honestly thinking of doing it without drugs, my chances are not good and so far it hasn't happened. So here are the issues.

Every body when pregnant makes blocking antibodies to there partner that protects the fetus. I don't have enough of these antibodies, my body is not producing enough. Only enough to get me pregnant for a short time. The treatment for this is called LIT (Leukocyte Immunisation Therapy) which involves me being injected with my DH white blood cells, to get my body to make more of these antibodies. We will have to travel to Athens to have this done as there is no-one in the UK that follows the Beer protocol on this treatment. LIT is offered at one clinic (The Lister) but he does it a different way and its very expensive here. Also I will have to have two injections of a drug called Humira to help lower my TH1/TH2 Cells (another type of cells that attack the fetus). Once I have these two treatments I will have to send my blood to the US to be tested again to see if the levels go to where they should be before we can even think about TTC.

If this is good we move onto the following drugs on Day 6 of my natural conception cycle.

Aspirin and Fragmin - I have two types of blood clotting issues. One is inherited from both my parents and the other is an antiphospholipid issue.

Dexamethasone - a steroid that helps with the blood clotting issues and my high NK cells.

IVIG - Intravenous Immunoglobulin - the same treatment given to those who have organ donation (helps body not to reject organ / fetus), it is made up of 50,000 peoples blood and is fed into you via a drip over 3-4 hours. It is for the high NK cells as steroids on their own are not enough. When they do the NK Assay they mix IVIG with your blood to see how much it reduces your NK and confirms that it works for you.

If I get a BFP I will need another IVIG immediately and then possibly every 3-4 weeks for first trimester. Bearing in mind that IVIG is £1200 a shot its pretty expensive stuff. It's effects also do not last long so I don't conceive first or latest 2nd cycle it would have been a wasted £1200 for the first go...

When I get a BFP I will continue to take the drugs although I am unsure how long for. I believe the blood thinners through entire pregnancy and steroids until at least 12 weeks...

I am also told that my serotonin levels are low (this is a neurotransmitter / hormone in your brain and this to do with how you feel and low levels are linked with depression) and they tell me I should go on anti-depressants asap to bring these levels back up as low levels make other killing cells too high...

So basically a concoction of drugs, all as important as each other so of course they say the best course of action is to take everything and not to skip on one. We will have to pay privately for the drugs too as our m/c consultant I believe will not support all the drugs and I don't want to risk telling him for him to tell me we have to pay him privately for our obs care.

I feel like although I have answers this is the worst case I could of imagined. I never thought I would have so many issues and have so many drugs to take, the more issues the more things to go wrong. It's like I feel like I have been told I can never have children naturally and the only chance is by taking all these drugs. There are no guarantee's and our future has just become very expensive :sadface: I am so grateful for the tests and glad there are options available to us but bloody hell why does it have to be so difficult.

Why is my body acting like this? They reckon the average age of women who go to the Beer Clinic are 38 and have tried everything else. I guess I should be glad we have reached this stage while I am 32, he tells me age is on my side and that there is time to evaluate should things not work for us...I knew something would come up but never so much. I know that I am one of his more complicated client's although he didn't directly say this.

My head's been spinning this weekend...we are going to try with the treatment but will have to borrow money to do this. We are looking at least £5-6 k per go and this is trying naturally without IVF. If we didn't conceive naturally within a couple of months we would have to consider IVF and egg donation - the egg donation as we couldn't afford to pay for IVF ourselves.

I had to stop writing this an hour ago and am now back out of a meeting and have lost my flow so going to stop now.

If anyone wants any more info or wants to know what tests I had just shout.

xxx
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

This post has been edited 1 times, last edit by "Blondie" (Aug 5th 2008, 2:17pm)


Peppa

MEMBER

Posts: 10,434

Thanks: 1 / 0

  • Send private message

2

Tuesday, August 5th 2008, 2:38pm

Think you need a big hug lady :hugs:
I'm so sorry that it wasn't the news that you wanted or was expecting. I don't really understand what all this means exactly but i really do hope that the tx needed is going to work.




ICSI May 08 - BFP
Our beautiful baby girl was born February 2009
Jan 2010 natural BFP M/C 9 weeks
May 2011 - BFP
Baby boy born Jan 2012




    United Kingdom

Posts: 15,284

Reg: Sep 24th 2006

Location: Up to my armpits in ironing

Children: Three gorgeous daughters!

Thanks: 100 / 90

  • Send private message

3

Tuesday, August 5th 2008, 2:54pm

Oh hun, what a huge amount of information to take on board. :sadface:

You must be gutted. I know you've got the answers but still, its going to take some time for you to digest all of the information and prepare yourself for what you have to go through. I really hope something turns up to make the process easier for you, even if its taking part in a trial about the treatment, at least then that would take the cost factor out of the equation.

Sending you a really big hug and lots of love.

xxx


Angel baby April 07, Angel baby December 07, DD1 August 09, DD2 March 11, DD3 October 13

Jo101

Star

Posts: 1,033

Reg: Mar 18th 2008

Children: None yet

  • Send private message

4

Tuesday, August 5th 2008, 3:13pm

Wow loads to take in...yes it is mind blowing...but on the up side, you are getting answers to this unexplained infertility. I take my hat off to you, fair play, there is no such thing as unexplained infertility and you are determined to get to the bottom of it. You need to give yourself a major pat on the back, just think you are on the road now....and instead of sitting in the car wondering what road to take...you have been given a map.

So I think it's all good...daunting but good and it will be all worth it in the end.

2nd IVF :BFP:

kar1

MEMBER

  • "kar1" is no longer a member of FZ

Posts: 12,830

  • Send private message

5

Tuesday, August 5th 2008, 4:10pm

crikey

don't think i being a wally but have you thought of getting a second opinion?
will you go prescribe any of the drugs?

mine will do the steriods and the clexane
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Posts: 224

Reg: Apr 28th 2008

Location: The North

Children: One daughter

  • Send private message

6

Tuesday, August 5th 2008, 4:46pm

wow. there's a lot to plan and think about. but even just to know about, and understand all of the those issues means you have come so far already. i think you are doing so well!

it's difficult but there's a real plan of action there- for when you are both ready. hope you are ok, take it easy for a bit! lots of love x
TTC naturally.
Severe Endo & Adhesions.
Excision of Endo June '08.
Baby girl born May '09!

Posts: 3,147

Reg: Jul 3rd 2008

Location: South West

Children: 2 beautiful twin daughters :)

  • Send private message

7

Tuesday, August 5th 2008, 7:02pm

Wow - what a lot to take in :8o:


I wish you lots of luck with your treatments.


:xxx:


Moonshine



JENSQUI

Megastar

Posts: 7,427

Reg: Feb 26th 2007

Location: Edinburgh

Children: one very special daughter

  • Send private message

8

Tuesday, August 5th 2008, 7:09pm

what a lot to take in Blondie.
I'm going to need to read this through a few times so that I understand it but just wanted to give you a big hug in the meantime.

this isn't over yet xxx


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

  • "Blondie" started this thread

Posts: 2,643

Reg: Feb 28th 2007

Location: Surrey

Children: Not yet

  • Send private message

9

Wednesday, August 6th 2008, 10:01am

Thanks Ladies for your encouraging words blowkiss it means alot.

Kar - Can't really get a second opinion...these tests were never offered to me here in UK and if I was to see my GP / Consultant they will either tell me to try what they are offering or discount it as they know nothing of it...regarding the drugs...I can get the fragmin on NHS, LIT / IVIG and Humira are too expensive to get on NHS and not approved / studied over here for fertility reasons so we will have to pay for that. If I decide to go ahead with anti-depressants I will ask my GP for those...

I would really like some support from a consultant here so we are considering either going to see Paul Armstrong at the Portland Hospital (he offers the LIT and IVIG) or Mr Taranassi at the ARGC....Not sure yet.

I am trying to get to grips with the results, in a way I am grieving as I feel like I have been told that naturally I cannot have children and little things keep popping into my head, negative thoughts. In another way like you wise ladies have said, we have been given a map and a chance and for that I am grateful.

X
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

Ros

Megastar

Posts: 9,021

Reg: Mar 14th 2008

Children: twin girls thanks to PGD!

  • Send private message

10

Wednesday, August 6th 2008, 11:24am

Just read about your results Blondie - wow, that's such alot to take in. But there is a chance so you do have hope - and that's what keeps us all going.
Sending you lots of love and hoping that it all works for you. Please keep us updated x

babydust to help you on your way

After 5 years of endo surgery, clomid, 2 x MM/C, 2 x ICSI cycles and 1 PGD cycle,
beautiful twin girls born 8th Feb 2010, we are so grateful

Posts: 493

Reg: May 20th 2007

Location: London

  • Send private message

11

Sunday, August 10th 2008, 10:32am

Wow, what a lot for you both to take on board. I really admire your determination. Really hope you go through with the tx and you get the best possible outcome. xx

chatterbox

Megastar

Posts: 8,584

Reg: Nov 30th 2007

Children: Two heaven sent miracles!

Thanks: 36 / 16

  • Send private message

12

Sunday, August 17th 2008, 3:53pm

Bl**dy hell! What a total bombshell of info hun.

Not sure what else to say, apart from I hope that everything works and pray that you find your way to the end of the tunnel! It may seem dark now, but there's light ahead.

Loadsa luv. 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

  • "Blondie" started this thread

Posts: 2,643

Reg: Feb 28th 2007

Location: Surrey

Children: Not yet

  • Send private message

13

Monday, August 18th 2008, 1:18pm

yes was alot to take in :8o: think I have digested it all now though :D

We saw Paul Armstrong at the Portland this Friday just gone about doing the first treatment of LIT. He explained the theory of how the treatment works - he says that when a woman gets pregnant her body will react to the partners different DNA by producing these blocking antibodies which help protect the fetus. I am not making these to my DH so the theory is that they inject under into my skin, vein and muscle (total of 4 injections) my DH white blood cells at a lot higher dose than you would receive / react to his DNA from being pregnant in the hope that I make these antibodies now / before I conceive again...Does that make sense :hmm:

He agrees that we need to do it and we are booked in for Friday 29th August. I am off work that week so times well. We will need to go in at 9am and my they take a pint of blood from my DH. They then send us away for a few hours while they do what they need to do and then go back and have the injections. So fingers crossed it works for us :pray:

I have started taking the anti-depressants to bring up my serotonin level, first day of taking one felt so sick all day which apparently is a common side effect. I think it didn't help takin without food so have taken with food and seems to be ok....will see how I feel after a month, if I feel different, better, more calm or whatever may continue with them but if feel no different will come off them. Need to take them for a period just to get my serotonin up.

Will also have my first injection of Humira tonight, need to one every two weeks, total of two to take.. This is a drug that is given to people with arthritis so basically calm down inflammation in my body. Once we have done the LIT and both injections we wait 4 weeks and then get my blood tested again to find out if they have worked....

I really really hope so, not only is it scary if it doesn't (what do you try then...etc) but its expensive...Just for the two injections and tablets it was £900....

Anyway thanks for reading / listening...Would like to start a diary but not sure where to start it ?( or should I just type it on this thread?

Any suggestions

x
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

    United Kingdom

Posts: 15,284

Reg: Sep 24th 2006

Location: Up to my armpits in ironing

Children: Three gorgeous daughters!

Thanks: 100 / 90

  • Send private message

14

Monday, August 18th 2008, 10:51pm

So if this LIT and Humira injections are successful does that mean you may not need all the medication and IVIG when you start to TTC?

Quoted

Originally posted by Blondie
Would like to start a diary but not sure where to start it ?( or should I just type it on this thread?

Any suggestions


Its up to you hun. You could have an immunology diary in the general fertility diary section if you like or the in between diary section? We could put a link in this thread to your new diary so everyone knows where you are. Don't forget we can always move your diary to a different section if you feel more comfortable with that. Or if you prefer you can keep adding to this thread for now and decide at a later date.

Just post here or pm any of the team if we can help in any way. :smile:

xxx


Angel baby April 07, Angel baby December 07, DD1 August 09, DD2 March 11, DD3 October 13

  • "Blondie" started this thread

Posts: 2,643

Reg: Feb 28th 2007

Location: Surrey

Children: Not yet

  • Send private message

15

Wednesday, August 20th 2008, 10:11am

Thanks PP - I think an immunology diary in the general fertility is a good idea. Should I start this myself?

Sometimes the LIT and humira can sort out the NK cells which is what the IVIG is for...so there is a chance that I may not need IVIG if they lower but would still need to take steroids regardless as these also help with blood clotting issues...

We will know this when we get retested in a month.

xx
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

    United Kingdom

Posts: 15,284

Reg: Sep 24th 2006

Location: Up to my armpits in ironing

Children: Three gorgeous daughters!

Thanks: 100 / 90

  • Send private message

16

Wednesday, August 20th 2008, 10:50am

I hope the LIT and humira do the job. I have everything crossed for you hun.

About your diary, if you want some of the posts from here in your diary, I can separate them out for you and start you diary for you, or you can start it yourself. The choice is yours. :smile:

xxx


Angel baby April 07, Angel baby December 07, DD1 August 09, DD2 March 11, DD3 October 13

Posts: 666

Reg: May 28th 2008

Location: Falkirk, Scotland

Children: one stepson ..& one miraculous wee boy!!!!!!!

  • Send private message

17

Thursday, August 21st 2008, 1:04pm

Woh thats a real lot of info & stuff to go through Blondie - im feeling overwhelmed just reading it all.
I think we posted togerther a wee while back.
I know we all become mini experts and top notch researchers, so I am sure you've looked into all possibilities - but I just wondered if you had come across Dr Quenby at Liverpool Womens Hospital and her research on suppressing the immune system with a steriod?
I just mention it, it case you hadn't and if it had any chance of helping you out at all? I'm going to see her in a couple of weeks - free & she's witht he NHS - she's gonna do a womb biopsy to check if I have high levels of Uterine Natural Killers Cells - basicallly and over keen immune system - if I do, she'll put me on a steroid called Prednisolone for 12 weeks, which they also give transplant patients to stop their immune from rejecting the organ.

I now just want to share my find with anyone & everyone whom it might help, as it's something I came across by chance and wouldn't want anyone to miss out on their opportunity for a child.
regards
vanessa x


10 Losses:
Aug07@11wks
Oct07 Dec07 Mar08 & Apr08 - biochemical pregs
June08 @7wks (baby aspirin)
July08 & Aug08 - biochemical pregs
Oct08 @6wks (cyclogest)
Feb09 @6wks (cyclogest & baby aspirin)


...trying Traditional Chinese Medicine & accupuncture just now!



My Diary



Calypso

Superstar

Posts: 5,464

  • Send private message

18

Thursday, August 21st 2008, 2:21pm

Am going to have to come back and read this thread in detail in a bit. ?( It's a lot of information and very useful so thank you Blondie for writing it all out - I think you are amazing to take it all in and get to grips with it. I wish you all the very best with your tx





Life is not about waiting for the storm to pass, but about learning how to dance in the rain



Jan 08 Fibroid removed. May 08 IUI - BFN :sadface:
Nov 08 IVF 7 eggs (just one fertilised :sadface: - BFN
May 09 ICSI 1 - 7 eggs (two fertilised) BFN :sadface:
Aug 09 Another fibroid removed
Nov 09 ICSI 2 - 1 mature egg (it fertilised) BFN :sadface:

My journey is now over

  • "Blondie" started this thread

Posts: 2,643

Reg: Feb 28th 2007

Location: Surrey

Children: Not yet

  • Send private message

19

Friday, August 22nd 2008, 10:21am

Thanks for the replies ladies blowkiss

PP - Would be great if you would be able to take my posts from this thread and start me a new immunology diary in general fertility, I can then add to it from now on :D

Scotwife - thanks for your message. I have tried prednisalone on last pregnancy, it wasn't enough for me. My NK cells were too high among other issues and if they remain high I would need IVIG, from the tests I have had IVIG would bring them down. Although I would still need to take steroids on top. I have had a full NK assay and I do not have high CD57 which I believe are the NK Uterine cells - if you have these it can be difficult to get pregnant.

Calypso - there is a thread giving more general info on immune testing that Eeyore posted in this section if you want more info..

I didn't get to take my Humira injection when I thought I would, Tesco mucked up, but should be tonight, only a week late :sadface: not really a problem but it ideally needed to be timed to finish at same time as LIT next Friday but will be a week over now...we need to send blood to US again one month after treatment.

Will update when my diary is up and running.

x
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

This post has been edited 1 times, last edit by "Blondie" (Aug 22nd 2008, 10:22am)


    United Kingdom

Posts: 15,284

Reg: Sep 24th 2006

Location: Up to my armpits in ironing

Children: Three gorgeous daughters!

Thanks: 100 / 90

  • Send private message

20

Friday, August 22nd 2008, 12:17pm



Angel baby April 07, Angel baby December 07, DD1 August 09, DD2 March 11, DD3 October 13




FERTILITYZONE



MEDHURST – PROUD HOSTS OF FERTILITYZONE