[BeBe11]

Hello

I have just received a call from ARGC and I will need IVIG drip (plasma antibodies) tom.  I am so worried about it because of slight risk of contaminated bloods ( HIV).  The nurse has reassured me that it is very rare and that they have had no probs at all at ARGC.  I'm so frightened   I know a few of you have had it... please can you advise?

Thank you so much.

BeBe x

 

[Loobs1]

Hi Be Be

I think it's perfectly normal to be concerned, but please try not to worry.  i've had it about 6 times and it's absolutely fine. they have to tell you the worst, but it's such a remote risk try not to worry about it.  think of it as being helpful and is just another stage to go through to get to where you want to be - that's how i approached it the first time 

a couple of tips - take some snacks with you, and something for lunch, it's surprising how hungry you feel, lying there for 3/4 hours!  and if you're right handed, have the canula put in your left arm, so you're not restricted (the first time i had a beetroot salad which i i had to try and eat with my left hand - disaster!).  and have something to read with you - it gets quite dull.

but really do try not to worry, so many people have it, and it's fine!

best of luck.

Loobs xx

 

[Krispichick]

Hi Bebe

I've had two lots now and don't give it a minutes thought any more. They have to tell you about the risks because it's a blood product but think they said that no cases of contamination had occurred when I had it.

I also read somewhere that it's given to newborns for something (can't remember what now) but figured it was probably ok for me.

Good luck and Loobs tips are good too. I took my iPod but mostly snoozed!

Krispi
X

 

[BeBe11]

Thanks Loobs and Krispi .  You messages have calmed me down, will need to update DH tonight re IVIG.  I will take snacks and make sure I get it done in my left arm. 

Huge hugs to you both

BeBe x

 

[TRM]

Ladies, afternoon

Bebe -  I'm sure the plasma is rigorously tested for contamination but as always one cannot rule out any unknowns. The risks I'm told are minimal as the criteria for donors are pretty stringent. Rest assured, they (Argy) would not push to use a method they are not sure of.

On another note; Does anyone know what the criteria for IVIG/Steroid treatment are at the Argy? I'm particularly interested in the NK levels at which they determine which of the 2 courses of treatment to start with? I'm trying to factor in a larger contingency budget for IVIG as it is rather pricey...

According to the nurse (Jane) they normally start with the steroids, carry out repeat immunes then change treatment if the response is poor but there is no formula. After ET, they revert to IVIG I'm told so there's no choice there.

DW initial immunes counts came in at:

CD19/CD5 - 14.3 (normal 5-10)
CD56 - 16.5 (normal 2-12)

Oh and BTW, how much are the repeat immunes? Do you get the full whack or targeted ones during TX?

 

[Hope4aMiracle]

Hi TRM,

I'd be interested to know the answer to that too as my NK levels were slightly outside normal range.

I have been told that I need repeat immunes and it will cost approx £300.

As for the IVIG, I'm hoping we win the lotter 

Danielle x

 

[tabith]

Hey all!

I have had three lots of IVIG this cycle and am just over 8 weeks pregnant. I think that the risks are pretty minimal as regards transmission of HIV, Hep B etc. But they of course have to warn you. I have had no side-effects other than tiredness. The actual process, as the others say, is painless. Every time I have had it done there have been lots of other ladies to chat to and the time goes reasonably quickly. And the nurses have been just LOVELY. They check your blood pressure regularly to make sure you're ok and also monitor how much you're drinking.

As for levels, mine are ridiculous. CD56 was (I think) 26 during stimming. After BFP it was 41 and last test was 35. They said that this is way higher than they usually see. Most of the people I've spoken to having IVIG are more in the 14-20 range. When I asked Dr D he said that if people were slightly out of range they sometimes opted not to give it but in my case would be strongly recommended. From what I've read in academic literature, there are no real set limits on what NK levels are damaging, but the Chicago tests suggest the ones that you guys mention ie. 2-12 for CD56. And as I'm sure you all know, the use of IVIG in fertility treatment is controversial, but ARGC are convinced it works (as are many patients).

Hope that helps a bit

xxxx

 

[Krispichick]

Hi Trm,
I have never worked out how they decide which route to take with ivig/steroids. I've had so many combo's now pre & post ET. It's not a dead cert  that you'll only have ivig after ET. I've had just pred, and no steroids at all so far. And ivig has been day 7 of stimms and at 5+6 weeks pregnant. I do know that it's not just as straightforward as high NK's = ivig.
Kx

 

[milliemorley]

Hi TRM

Just thought I'd give you my results so that you can see how they compare to yours 
I didn't have IVIg, my immunes were treated with steroids (initially dex then pred once I got my BFP). I wanted to reassure you that even though you have high NK's they can be treated and will get lower.

My Initial NK assay was as follows:

50:1                          23.0
25:1                          15.6
12.5:1                        13.0
IgG conc 12.5 50:1    13.8
IgG conc 12.5 25:1    12.4
IgG conc 6.25 50:1    14.6
IgG conc 6.25 50:1    12.7
%CD3                      86.4
%CD19                      3.6
%CD56                    11.4
%CD19+cells, CD5+    55.6

Following 9 days of dexamethazone steroid my results were:

50:1                          10.5
25:1                          6.8
12.5:1                        3.0
IgG conc 12.5 50:1      9.7
IgG conc 12.5 25:1      7.2
IgG conc 6.25 50:1      11.1
IgG conc 6.25 50:1      7.6
%CD3                        85.5
%CD19                      8.6
%CD56                      6.8
%CD19+cells, CD5+      15.1

I was on a huge dose (20mg) and my friends I cycled with were on 5mg, so that may have something to do with them going so low? needless to say once these results came back I was cut back to 10mg for the rest of my cycle until ET.
I was then put on 10mg of Predineselone and my results were:

50:1                          13.2
25:1                          6.8
12.5:1                        4.1
IgG conc 12.5 50:1      13.1
IgG conc 12.5 25:1      10.7
IgG conc 6.25 50:1      9.8
IgG conc 6.25 50:1      8.0
%CD3                        89.5
%CD19                      3.0
%CD56                      4.4
%CD19+cells, CD5+      6.7

The last set of results were much lower than they had previously been but apparently pregnancy lowers your immunity so this explains the change in these results.

Anyway .. I think the best thing to do is wait to see what Mr T has to say and try not to worry. Hopefully you will avoid IVIg because it's so expensive, but if you do have to have it, then so be it. My philosophy when I had treatment was that if it helps .. then lets do it!

Best of love and luck
Millie xxx

 

[BeBe11]

Hi all

I was told by the nurse that my NK cells are as follows:
CD56: 13.5
CD19 + CD5: 19.5
I have to have both IVIG and steroids tom.  Mr T is doing this as precautionary in my case as per nurse.  She also told me IVIG starts at £1500 yikes!!

BeBe x

 

[karenanna]

Hi Bebe

I have had 3 lots of IVIG - just to reassure you there have been no reported cases of contamination in the UK.

Remember to take something for entertainment and snacks, as you will be sat in th basement for 4/5 hours.

Karenanna xxx

 

[TRM]

Decided to get the notes out as I was talking out my backside. Can hardly read DWs writing as she frantically jotted down her last call with Jane.

From what I'm reading Mr Ts plan is to start with steroids and only change course if necessary after the repeat immunes during tx. DW did not put the steroid name down (left next to steroid) so I guess the information was coming thick and fast.
There may be a need for IVIG but hopefully the steroids kick in and keep the NKs in check.

Thanks Millie, I was flying off the seat of pants there an needed to check the notes before working myself up with my spreadsheet.....

 

[BeBe11]

Thanks Kareanna You have such good advice.  Your twins are gorgeous

I really don't want this IVIG, they're going to have to strap me to the chair tom.....I will ask lots of questions - may be I can persuade them to just give me just steroids   Why give IVIG as precautionary? 

I will let you all know  how tom goes.  You have been great support

Bebe xxx

 

[karenanna]

Bebe - could you ask about intralipids instead if you are worried about IVIG?

Karenanna xxx

 

[BeBe11]

Hi Karenanna

I just googled Intralipids looks very interesting.  I will def ask tom, rather have that than IVIG...

Thank you so much

BeBex

 

[loobieloobs1]

Hi Bebe

I was like you... very reluctant to have ivig. On my first argc cycle I declined immunes/ivig. That didn't end well.
On my second we decided to have it as it was to be our last cycle. I had it the day after transfer. I'm so glad I did. I'm further than I have ever been.

Only you can decide if it's right for you but what I would say is don't have any regrets. This journey is tough enough.

Good luck
Loobieloobs xxx

 

[Hope ^J^]

Hi Bebe,

Just want to send lots of    as i do not have any say about IVIG experience   although as what I have read by the experts FF's sounds positive and the intralipids too! yes, i'm with you of asking the clinic further about this "precautionary measures" that makes you feel more comfortble and your mind at ease! Hope will went well for you tomorrow whatever your decision may be. I know how daunting this tx is! for us newbies  

try not to worry much, I'm sure they can give you a well thought rationale out of it coming from Mr T! xx 

 

[Crookers]

Hi Bebe

I dont know much about ivig only what i have read on inet which confuses me somewhat, but wanted to say good luck for it. Its all so daunting this process so ask lots of questions when you get there and go with whatever you feel is best for you.

Good luck!

Jane xx

 

[BeBe11]

Hi Jane, Karenanna, Loobs & Hope

Thank you so much for all your kind messages .

I went to ARGC and could not got through it, very unusual for me to react this way .  I asked for 24 hours to think about it.  I just got very tearful, I'm usually very strong!! 

The doctor told me that they only started to use Intralipids in the last few months where as they have been using IVIG for 10 years now....  I need to think about it seriously tonight and then go back tom am.  I can have Intralipids but they have not done much research about it.... Only 25 women had it at ARGC.

Tough decision I have to make before I go back tom

BeBe xxx

 

[Crookers]

Hi Bebe

Am so sorry this morning didn't go well for you - have a think about what they have discussed with you overnight and things may look different tomorrow.

Hope you are feeling all ok.

Jane x