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  • "fluffy" started this thread
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Tuesday, March 22nd 2011, 1:48pm

An immune trailblazer starting immune tx

Hi immunies,

Well, alot has happened in the past few days! Am feeling a mixture of emotions .... scared, worried, excited, feeling positive ....

All my suspicions were right. I do have immune issues. I received my results on Friday by fax and had my phone follow-up with Dr Gorgy yesterday. The results were impossible to interpret for me, just lots of numbers and no explanations, so you really do need a doctor to explain it all. The problem is with Dr Gorgy though is that he does have an accent and I find it very difficult to understand him on the phone! (Completely different when we saw him in person though and we didn't have any trouble understanding him then - so I wouldn't really recommend the telephone consultations unless, like me, you live very far away).

Think if I had a biology degree then all this would be easier to understand!! Gorgy said that I'm on the borderline of being normal but do have issues and there is evidence on the results of previous m/c and/or implantation failures (all natural cycles as I'm only just about to start my first IVF).

The problems were: MTHFR - positive (aswell as other blood clotting probs seen in tests for fibrinogen, PTT and PTT ratio)

NK Assay - 50:1 - 15.3 (they like to see under 15)

CD56 - 12.4 (too high)

CD19+cells,CD5+ - 4.5

LAD - (Bcells)IgG+ - 23.7 (too low)

TNF - 29.5 (borderline but higher than he would like to see)

I think that's everything, but it's all abit confusing and scientific!

He said my NK's responded better to IVIG but because I'm borderline then Intralipids are ok (which is good news for me - so much cheaper and easier).

So I've been prescribed Clexane (20mg before EC and 40mg after EC), Intralipids 20% 100ml, Steriods/prednisone 25mg and LIT.

Amazingly, our GP here in Italy converted our prescriptions for us today no problem (into Italian prescriptions) and we are taking them to the pharmacy this afternoon. Will let you know later if we manage to get all the drugs ok.

I'd be interested to hear what side effects the above drugs give (as the leaflet I'm sure will be written in Italian). Bit worried about the side effects of the steriods.

And if anyone can give me some advise regarding the LIT that would be great. I'm on the waiting list now for LIT with Gorgy (he is fully booked now so probably won't get it during this IVF cycle). Still waiting for our DQ Alpha results to see if me and DH are a match or not. Not sure if I like the idea of having a donor blood! How much does LIT cost?

I'll be starting on all the other drugs next week!!!

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"
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Maria72

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Tuesday, March 22nd 2011, 2:35pm

I think you'll be fine getting the drugs. The intralipids will be cheaper in Italy. What I would do is Google the name of the drugs and you can print the sheet that normally comes inside the drugs. Don't take the steroids after 2pm or you won't sleep.
Good luck xfingers

BraveGirl

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Tuesday, March 22nd 2011, 7:51pm

hi there hon

can i ask why he is suggesting LIT if you dont have a DQ alpha match?
also for the MTHFR - are you getting high dose folic acid and B vitamins?

is he giving you any progesterone support?

bg x
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
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ruthie

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Tuesday, March 22nd 2011, 9:23pm

Glad Dr G has explained everything and you've got all the scripts sorted. It's such a nightmare when you first get hit with all that info - just tons of numbers and none of it makes sense! Still he's worked out a protocol for you and with no IVIG it does make it much much cheaper fortunately.
Clexane and intralipids you shouldn't notice any side effects. The clexane gives you amazing bruises, really beautiful if they weren't so painful! The steroids vary so much. That is a high dose so you will notice the effects. Mine were fairly mild in that I just had a ravenous appetite and after 4 months on them got very fat! Some people get moon face, some get irritable. Definitely the sleep thing like Maria says. It messed up my sleep pattern whatever time I took them but the earlier you can take them the better. They have to go with food so breakfast is ideal.

Good luck!

xxx

ruthie

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Tuesday, March 22nd 2011, 9:26pm

Oh, btw, meant to say, in response to BG's question, the LIT will be for the LAD issue. You may need donor LIT depending on whether or not you and DH are a DQ alpha match.

xxx

  • "fluffy" started this thread
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Tuesday, March 22nd 2011, 10:31pm

Hi Maria - thanks. We got all the drugs ok (they gave us some straight away and the rest we are picking up tomorrow). You are right, the intralipids are definately cheaper here. They only cost 23 Euros !!!! We are trying to get names and contacts for a private nurse who can come to our house to administer them. Apparantely, if I need more (which I will if get a BFP) then we can go straight back to the pharmacy with the letter request (and don't need to go back to Gorgy or the gp here!!!!). We got the clexane and steriods completely free as we got them covered on the state system here!! I'm really surprised by all of this as usually everything here is so difficult, complicated and frustrating but it seems that getting drugs here is very easy and cheap!! One good reason for living here!! Thanks for the tip about googling the drug and printing the info sheet. I'm guessing then that the steriods can give you insomnia? Thanks, I will take them in the morning then. xx

Hi Bravegirl - sorry I didn't explain the LIT thing very well. From my understanding of it, the reason he has prescribed LIT is because of my LAD (leukocyte antibody) result which is too low and indicates previous implantation failures. The LIT treatment should help with this/sort it out. The DQ Alpha result just tells them the method of doing the LIT, ie: if they can inject my DH's blood into me or whether we need a blood donor's blood to be injected into me. Obviously I would much prefer it to be DH's blood! Not sure which way around it is (to be a match or not a match - I'm abit confused about that). But as I said, Gorgy has a waiting list now for it and I think it is very expensive (??) so not sure when or if we will have it. He said it's preferable to have it before or during IVF (but he doesn't have appointments which could fit into my cycle and to be honest I would rather not have to fly to London during tx)... but lots of women have it successfully after getting a BFP (would love to hear on here if anyone has had that experience). I've briefly read about a clinic in Greece that does LIT... Anyone know about that??

Thanks for the advise on the high dose folic acid and B vits. I asked Gorgy about that and he said that 800iu per day is ok. I'm already taking that and also already taking High Complex Vit B (which contains 400ui Folic Acid along with Pregnacare which has got the lot including 400 Folic Acid).

Dr Gorgy didn't mention anything about progesterone support but he already knew that I've been taking 400mg Cyclogest for the last 5 months. I didn't use the Cyclogest this month though as my IVF clinic said not to, and they have prescribed me progesterone aswell for the luteal phase of this IVF cycle. They've given me 200mg's to take 3 times a day (600mg - do you think that will be enough ??). xx

I've been taking 75mg per day of DHEA (to improve egg quality) since January and been taking 75mg Aspirin since October but my ivf clinic have told me to stop them both once I start stimms. But then for after EC or after ET (can't remember which) they have prescribed me 100mg Aspirin per day. I think that is because what is called "Baby Aspirin" in the UK is 75mg but what is called "Little Aspirin" in Italy is 100mg. Should I be worried about this higher dose??

Aswell as all the above I also take Royal Jelly, Starflower Oil and Omega 3 supplements. Should I be stopping them once I start tx or is it ok to continue?? Would the starflower intervere with the ivf as it's meant to balance hormones??

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"
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ruthie

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Tuesday, March 22nd 2011, 10:40pm

No idea about the starflower I'm afraid. Omega 3s should be fine. I've taken them all through every cycle. Zita recommends them and my clinics always said it was fine. I wouldn't worry about the higher dose of aspirin. It's still much lower than the anti inflammatory dose which would be 300 mg about 4 times a day.
That dose of progesterone is pretty standard and should be fine. A lot of clinics now don't use P support at all as in theory your own corpus luteum should do the job but it's important for immunies to get good progesterone supplementation.

Re the LIT, my understanding is that if you are a full match then you need donor blood but if you aren't a match then DH's blood is fine. I think if you have 1 antigen matching they let you use DH's blood too, but don't quote me on that. I don't know much about LIT I'm afraid.

xxxx

  • "fluffy" started this thread
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Reg: Feb 18th 2011

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Tuesday, March 22nd 2011, 10:49pm

Hi Ruthie - sorry, it took me so long to write my post, have only just seen your new posts. What dose of steriods were you on? I've already put on abit of weight lately from drinking 1 litre of full fat milk a day (picked up that tip from FZ!) so I'm sure I will put on weight. Also have spotty skin from the DHEA! but I don't really care and hope it will all be worth it...

What is the moonface thing exactly??! Will I get hairy aswell?! Hope I don't turn into a man!! lol

xxx

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"
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Maria72

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Wednesday, March 23rd 2011, 5:36am

You just get a bit of swelling from the steroids. I didn't have any to be honest but I only took them one month. In Italy if a doctor prescribes you drugs then you need them so you get them on prescription. you can also get all the ivf drugs on prescription.
I think you'll be ok. It sounds like you have everything covered. The pharmacy could tell you about a nurse maybe?
You must be getting excited. Good luck babydust

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Wednesday, March 23rd 2011, 6:00am

Great news that you finally have some answers. As a fellow immunie I totally know what you are going through!! The steriods ARE fine, just take them in the morning. Do expect to put on a touch of weight and when you get pregnant, they can mask the symptoms of pregnancy. Not for everyone but for lots of people. I am one of those people and whilst my m/s has been virtually ZERO, that hasn't helped with my worry so be prepared for that. I didn't get any extra hair but I am very fair to start with.
I got one of those weekly pill dispensers to help remember what to take when. You will start to rattle!! Good luck with it all though xxx





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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chatterbox

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Thursday, March 24th 2011, 4:45pm

Hi hun, here's my tuppence worth.

The first lot of steroids (prednisolone) did make me put on weight around my face and my back and the second lot dexamethasone made my face EXPLODE :snigger: Acutally it wasn't funny at all and made me quite depressed seeing a stranger in the mirror. BUT its all worth it. Oh and yes it did make my face quite "downy". Something my DH dared to mention - only the once mind - my reaction was enough to let him know it should never be mentioned again! It's only starting to disappear now, along with my moon face - I've been off them for about 4 weeks.

They can (and did for me) make you sweat at night and do increase your appetite. The first you can't control, but the second you need will power!!! Take them as early in the day as possible (so you don't lie awake at night) and preferably with some protein (like your milk) as they raise your blood sugar level which can also contribute to fat storage - something you'll get enough of!

I'm also LAD -ve and was only prescribed IL's for this. My progesterone support was 400mg x 3 daily, quite a whopping amount so don't worry about your prescription.

(By the way hun have you thought about protein powder drinks? So you're not consuming so much fat in the milk? One of the best is Pharmablend 6hr release).

xxxx

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

  • "fluffy" started this thread
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Reg: Feb 18th 2011

Location: Italy

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Wednesday, March 30th 2011, 4:51pm

Thanks ladies for all the help and advise you've given me.

Today I've had a massive blow though as my cycle has been cancelled due to a cyst on my left ovary. It was my 5th day of stims and first scan (I was on 225 Menopur). My right ovary responded well but they said my left ovary responded too quickly to the drugs. I had a cyst on the left ovary in January which was caused by Clomid but by February it had gone. They think it is that one which has 'come back to life'. Anyway, am devistated and shattered and ended up crying at the clinic and all the way home. Just in shock really as we really didn't expect that to happen today.

Anyway, with regards to my immune tx - what to do??!

Clexane - I was due to take the first one when we got back from the clinic (so obviously didn't end up doing that).

Intralipids - Have a nurse booked to come Sat but guess we should cancel her now. Will it be ok to use/keep the ILs for next month?? - is there an expiry date?? I don't have them in the fridge.

Steriods - I had my first tablet this morning before leaving for the clinic. I guess that I just don't take anymore now but would there be a problem with having 25mg today and then stopping?? Decided not to call Dr Gorgy today as he's always too busy to answer questions on the phone and he takes ages to reply to emails.



Have to wait for AF now and hope the cyst is gone so that I can start stims again (and immune tx again). Might think again about getting booked in next month for LIT before the cycle....but I haven't really had any positive comments yet on here about LIT (or seen anyone on here who's actually had it?)..

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"
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Maria72

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Wednesday, March 30th 2011, 6:32pm

Hi fluffy, I am sorry you've had to cancel. It is better to cancel as the cyst would absorb all the stimming drug and you may get no or very few eggs. I had a cysts my last cycle and they carried on and all my eggs were immature. Waste of money and stress.
You don't need to take the other drugs now and you would need to cancel the nurse. I don't know about the IL, but I presume they would have a use by date. Maybe check.
You can stop the steroids straightaway as you have only had 1 dose.
Take care.
:xxx:

Maria72

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Wednesday, March 30th 2011, 6:37pm

PS- have you been told you need LIT too?

  • "fluffy" started this thread
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Thursday, March 31st 2011, 6:33pm

Hi Maria. Thanks. Yes I've been recommended to have LIT by Dr Gorgy (see my earlier posts)... 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"
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Maria72

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Thursday, March 31st 2011, 7:34pm

Sorry fluffy I couldn't remember if it was you or someone else that needed the LIT.

Don't worry about the cyst as they can remove them by suction, just like they empty the follicles during e/c. This is the one downside of the short protocol. With the long protocol the d/r drug you take at the beginning minimises the risk of cysts.
All the best
:xxx:

  • "fluffy" started this thread
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Friday, April 1st 2011, 2:34pm

Thanks Maria. I've posted you a message also on May Miracles. xx

I have some silly questions - not sure if I'm going mad or if I'm just over-thinking things. Am looking ahead to my next cycle. When the doc says start the steriods and clexane on day 5 of stimms, does that mean the 5th day of taking stimms (which I'm sure it probably is!) or the 5th day of your cycle (ie: since AF)? - sorry if I seem stupid but am going abit crazy!

If I'm taking 25ml of steriods a day (which I have in 1 tablet), what happens when I have to stop taking them? I've seen some of you say that you have to ween off them but I won't be able to do that if I only have 1 tablet! Do you others normally get them prescribed in smaller doses per tablet so that you can cut down when needed?

I asked Gorgy what time of day I should inject the clexane and he said in the morning but he didn't give a reason. What is the reason for taking in the morning and is doing it at lunchtime still ok?

Regarding Intralipids, Gorgy has prescribed 20% 100ml in 250-500ml saline. I'm having a private nurse administer it and she has asked if it should be diluted in 250ml or 500ml or somewhere in between of saline. Gorgy has just said 'any dilution' but surely I should make sure I'm getting this right?! Do any of you remember what you had? Also do you remember how long it was administered for/over what time period? 1 hour or 2 hours?

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"
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Maria72

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Friday, April 1st 2011, 3:23pm

Hi fluffy, I am not sure about the IL as I haven't had them yet. Also I am having mine done at the clinic so I don't know. I presume every one is different.

On the short protocol you normally start stimming on day 1 or day 2, after you have like a baseline scan (not all clinics give the scan). I think they mean to start the steroid when you start the actual stimulation drugs. I started the stimming and steroids together.
One tablet a day can be halved (as in you cut in in half) and you can have half for a couple of days and then 1/4 and then none, if you need to. I stopped all at once and I was perfectly fine.

The clexane you can take at any time. I took my first evening after egg collection. I was taking it in the evening. You just need to make sure you keep the jabs about 24 hours apart, which means having it more or less always at the same time.

Try not to stress too much and take one step at the time. You sound really stressed :hugs:




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