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ktb

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  • "ktb" started this thread

Posts: 754

Reg: Sep 6th 2009

Location: Essex

Children: we live in desperate hope.....

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1

Tuesday, June 21st 2011, 12:30pm

LIT Advice please - anyone who's had it!!

Hi there.

I am on a waiting list for LIT with Dr Gorgy, hopefully will get my first batch within the month.

When Dr Gorgy asked me when I wanted to start my next cycle, I said yesterday of course, along with everyone doing IVF. He said that I could have the first injection, start the following month if I wanted to and have the follow up injection either during treatment or if i got pregnant.

Is this wise?? Should I wait to have both injections and have my LAD test repeated, to make sure before doing treatment? Or has anyone else done as he suggested. Not sure really having never had it done.

Hopefully someone can help me!

Thank you in advance!

kt.xx
Cycles 1-6 2008 - present. All BFN's too boring to list now! (5 fresh & 1 frozen) :faint:
Cycle 7 - October 2011 3 x LIT, Intralipids, 60mg clexane, 100mg Prontogest, 25mg prednisolone. :BFN:

Check out my blog here - KTB's lucky number 7 Blog.......

Maria72

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ohffs

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2

Tuesday, June 21st 2011, 7:12pm

HI ktb, not a clue about this, but there are a few posts about it. Check these:
More immune results - can anyone help?
LIT

    United Kingdom

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Reg: Dec 5th 2008

Location: Wiltshire

Children: Yes please!

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3

Wednesday, June 22nd 2011, 8:51pm

Hi KTB

I'm having tx through Dr Gorgy and am on the waiting list for LIT. I guess if he is saying that you can have it during your treatment then it should be fine but then again you may want to wait to make sure that it has the desired affect before going ahead with your cycle. To be honest I don't know enough about it but hopefully someone else will be able to help you.

I have to have humira to bring down TH1:TH2 levels down before I can start a tx cycle, so am in a different situation. I have been on the waiting list for over a month. They actually called me yesterday to give me a slot at the end of July but because I didn't get back to them quickly enough they gave the slot to someone else, which is quite frustrating. You may have to wait a bit longer than a month to get LIT. Did Gorgy say it would be a months wait or did Jess at reception?
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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Posts: 330

Reg: Feb 18th 2011

Location: Italy

Children: Our miracle baby is on it's way!

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4

Thursday, June 23rd 2011, 10:15am

Hi girls,

As you have probably read from other threads, I was recommended LIT for low LAD. I have been at the top of the waiting list for several months now. When an appointment comes up, Jessica the receptionist will call you but if she can't get hold of you then she will offer the slot to someone else. Every time a slot came up for us it was bad timing for us. Also I had more or less come to the decision not to have the treatment but to rely on the Intralipids etc alone. As I am now pg, he had put me on priority for LIT, but I've asked now to be taken off the list as I won't be having it. So that means a shorter waiting list for you ladies!!

xx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
My diary


chatterbox

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Posts: 8,584

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Children: Two heaven sent miracles!

Thanks: 36 / 16

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5

Thursday, June 23rd 2011, 2:44pm

In theory I should have had LIT for being LAD negative... but its not something CARE offer/recommend. So I went with steroids and IL's which seemed to do the trick. (And quite a trick it was as I had a paricularly potent DQ alpha match with DH).

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

Rii

Star

Posts: 1,392

Reg: Mar 2nd 2010

Children: Blessed with two miracles December 2011

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6

Thursday, June 23rd 2011, 7:31pm

I PM'd you back love! xoxo
ICSI 1-April 2010 BFN
ICSI 2-July 2010 BFN
ICSI 3-January 2011 Immune Cycle- BFN (Humira, LIT, Intralipids, IVIG, Clexane, Progesterone & Steroids)
ICSI 4- April 2011 Immune Cycle - Blessed with a :BFP:


ktb

Ace

  • "ktb" started this thread

Posts: 754

Reg: Sep 6th 2009

Location: Essex

Children: we live in desperate hope.....

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7

Friday, June 24th 2011, 3:44pm

Thanks lovely ladies.

Beanie - Dr G said it would be within the month, so I guess he was telling me porkies.... :-( My DH is so crazy busy with work, it is probably a good thing it might be a bit longer, guess I will have to find some patience from somewhere!! When did you go on the list - do you remember? I went on the list last monday 13th, so not long ago. Apparently lots of people do go ahead with tx after their first shot, and have the follow up either during tx or once pg. So I will go the same way - hopefully once pregnant!!

Fluffy - thank you, and great news hon. I am going to wait though for LIT, I want to throw everything at this cycle, it may be my last option.

Chatter - not too much longer for you now lovey, has it sunk in yet?? I am sooo happy for you, you deserve this after such a long haul. xxx

Rii - thanks sweetie, Pm'd you back again too!!

Thanks to you all, I really appreciate it.

kt.xx
Cycles 1-6 2008 - present. All BFN's too boring to list now! (5 fresh & 1 frozen) :faint:
Cycle 7 - October 2011 3 x LIT, Intralipids, 60mg clexane, 100mg Prontogest, 25mg prednisolone. :BFN:

Check out my blog here - KTB's lucky number 7 Blog.......

    United Kingdom

Posts: 1,430

Reg: Dec 5th 2008

Location: Wiltshire

Children: Yes please!

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8

Tuesday, June 28th 2011, 8:51pm

Hi

KTB - I replied to your PM. Interesting to hear that you can do the first LIT injections and do the second later in your tx or when you are pregnant. I guess we could end up doing that if it takes too long to get our appointment. It depends on my TH1:TH2 levels and how many lots of humira I need to take. I have been told that I need to have a total of 4 injections. Does anyone know if sometimes it takes more than this or whether they only ever do a maximum of 4 injections??
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

    United Kingdom

Posts: 1,430

Reg: Dec 5th 2008

Location: Wiltshire

Children: Yes please!

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9

Tuesday, July 5th 2011, 8:08pm

Hi

I've got my appointments for LIT! First one is on Monday 11th July and second one is Tuesday 26th July.

Now I'm scared!!
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

Rii

Star

Posts: 1,392

Reg: Mar 2nd 2010

Children: Blessed with two miracles December 2011

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10

Tuesday, July 5th 2011, 8:21pm

Nobody ever mentions it but LIT hurts. I am sorry but i have to tell you! It really hurts!!! I had no idea and expected a needle pain but it is more than that. He uses both arms and injects several areas under the skin. That is why it hurts. There is no space under the skin. It takes 45 seconds each arm so it quick!

Beanie regarding Humira...i had to do Humira more than four times and in my last cycle he wanted me to do it again but this time i refused and opted for IVIG and intralipids only because each time i had Humira my cytokines went up! :thumbdown: Other clinics don't use humira and only use IVIG or intralipids and get BFP. So in my last cycle where i got my BFP i actually had really high cytokines at 52 after doing 4 shots of humira he wanted me to wait 3 months and do humira again. Some people respond really well to humira some don't! My lowest cytokines was after IVIG and intralipids so i truly felt my body responded better to IVIG and Intralipids. But don't worry just wait and see how your body responds to it and Dr. G will advise you with what is best!

Lots of luck...xoxo
ICSI 1-April 2010 BFN
ICSI 2-July 2010 BFN
ICSI 3-January 2011 Immune Cycle- BFN (Humira, LIT, Intralipids, IVIG, Clexane, Progesterone & Steroids)
ICSI 4- April 2011 Immune Cycle - Blessed with a :BFP:


ktb

Ace

  • "ktb" started this thread

Posts: 754

Reg: Sep 6th 2009

Location: Essex

Children: we live in desperate hope.....

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11

Wednesday, July 6th 2011, 7:25pm

Beanie - good luck for your appt. on monday - I replyed to your PM.

Rii - don't need to know that thanks hon!!!! However, I am a tough old cookie with a super high pain threshold, so hopefully it won't be too bad! I think I have very flabby forearms too so there must be room for a bit of LIT blood serum!! (hee hee - joke - I am not one of those fat farm chicks - really!)

Hope I will be in August.
kt.x
Cycles 1-6 2008 - present. All BFN's too boring to list now! (5 fresh & 1 frozen) :faint:
Cycle 7 - October 2011 3 x LIT, Intralipids, 60mg clexane, 100mg Prontogest, 25mg prednisolone. :BFN:

Check out my blog here - KTB's lucky number 7 Blog.......

    United Kingdom

Posts: 1,430

Reg: Dec 5th 2008

Location: Wiltshire

Children: Yes please!

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12

Wednesday, July 6th 2011, 8:15pm

Hi Ladies

Interesting that you responded better with the IVIG and Intralipids. I have to take IVIG as the tests show that I don't respond to Intralipids. Knowing me the humira won't work.

Do you think that if you don't get side affects it means the drugs aren't going to be as effective? I ddidn't have any side effects with the humira so far.

I'd heard that LIT was really painful. I've got quite skinny arms so I hope that won't mean more pain!! I'm fine with injections but I don't think that I have a very high pain fresh hold.

KT maybe you can come and hold my hand as you seem a lot braver :snigger:
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

Rii

Star

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Reg: Mar 2nd 2010

Children: Blessed with two miracles December 2011

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13

Thursday, July 7th 2011, 11:19am

Sorry ladies didn't mean to scare you but nobody warned me!! So it was worse! I think if i knew then i would be have been ready! The second time i had it hurt but i expected it so was mentally ready lol! :snigger:

I don't know if there is a relationship between side effects and humira working, i think the only way you will really know is with the blood tests. Good luck on Monday Beanie! xoxo
ICSI 1-April 2010 BFN
ICSI 2-July 2010 BFN
ICSI 3-January 2011 Immune Cycle- BFN (Humira, LIT, Intralipids, IVIG, Clexane, Progesterone & Steroids)
ICSI 4- April 2011 Immune Cycle - Blessed with a :BFP:


    United Kingdom

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Reg: Dec 5th 2008

Location: Wiltshire

Children: Yes please!

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14

Friday, July 8th 2011, 6:41pm

TH1:TH2 Treatment

Hi Ladies

Well the Humira has done bugger all for me! My results are;

TNF-a:IL-10 59.5% previously 61.2%, so no change really, as it will vary slightly anyway from day to day
IFN-g: IL-10 39.7% previously 24.3% so gone in the wrong direction!!

I've read and heard that LIT can help with the cytokin ratios. I'm sure Dr Gorgy will say to take another lot of Humira but is it really going to make any difference, as my body certainly hasn't responded to the first lot. I'm wondering whether we should just do the LIT and retest to see if that has helped - any thoughts anyone??

This is really disappointing - not a good start to my immune treatment, I just hope that the LIT works. Does anyone know of anything else that is used to treat the Intracellular cytokine ratio??
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

Rii

Star

Posts: 1,392

Reg: Mar 2nd 2010

Children: Blessed with two miracles December 2011

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15

Friday, July 8th 2011, 9:42pm

Beanie have you taken 1 or 2 injections of Humira?

IVIG helps with the cytokine ratio, i don't think LIT does.

I didn't respond to Humira but that does not mean you won't if you take more. Dr. G will probably recommend more Humira. Ask him if you can do IVIG instead and see what he says.

Don't be disappointed hun, your in good hands with Dr. G. He will try everything to get you pregnant....i know it is hard but try to stay positive.


xoxo
ICSI 1-April 2010 BFN
ICSI 2-July 2010 BFN
ICSI 3-January 2011 Immune Cycle- BFN (Humira, LIT, Intralipids, IVIG, Clexane, Progesterone & Steroids)
ICSI 4- April 2011 Immune Cycle - Blessed with a :BFP:


    United Kingdom

Posts: 1,430

Reg: Dec 5th 2008

Location: Wiltshire

Children: Yes please!

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16

Saturday, July 9th 2011, 7:32pm

Thanks Rii

I've had 2 injections. Jess told my DH today that sometimes with the first lot of injections people have a flare and it goes down with the next lot. I hope that this is the case for me. I think that LIT does help as well as IVIG but I will check this with Dr Gorgy on Monday. I am due to take IVIG when I start my actual ICSI cycle so maybe I will start taking it earlier?

Anyway I'll see what he says on Monday. I do feel a bit happier today even though Jess told my DH that I will have about 15 injections in each arm with the LIT!! I thought it would be a couple.
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

Posts: 214

Reg: Mar 13th 2009

Children: Hoping for a miracle.....please

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17

Friday, January 6th 2012, 7:39pm

Hi ladies - i just had my first LIT injections today, oucheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

I take my second Humera injection on tuesday too so hopefully I can start another cycle in March (and pray for a Christmas 2013 baby)

Lovely to see some success stories from names I recognise

xx

    United Kingdom

Posts: 1,430

Reg: Dec 5th 2008

Location: Wiltshire

Children: Yes please!

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18

Friday, January 6th 2012, 7:41pm

Hi Nix

Yes LIT isn't the nicest but it's worth the pain!

Hope you aren't feeling too uncomfortable.

x
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

Posts: 498

Reg: Mar 18th 2010

Children: Little one on the way....so excited long awaited!

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19

Wednesday, January 18th 2012, 11:21pm

Scared! Getting eye test done then ordering Humira any suggestions on cheapest place? Needed eye test and heard can affect vision so doing it logically lol

On LIT register and gonna have the aqua womb check all systems go!

Can anyone reassure me about what LIT and Humira does to you just having a panic off on drug affects lol same with first ever ICsi then got used to it :))

Not sure what time off to take with Gorgy and all this tx does he advise up front as so far I have found him 'get back to uou' and constantly chasing for my feedback :(

Yes impatient me lol
Me34 DH40
MF LC/Poor MOT
Sept 2010/Apr11 - 2 x icsi -BFN
FET Sep11- 3 No Thaw
Dr Gorgy Jun12 :BFP:
bab22 Evan born 25/01/13 perfect baby7

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