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Discussion Starter · #1 ·
Hello

I have not yet done a cycle with ARGc and unfirtunately may not be able to do as we are movinbg abroad in a month.

My FSH was too high this month - and this was the 'only' montrh I could cycle with them prior to our move.

My question is this. I have had Humira treatment (3 injections total and follow up bloods) My last injection was 18th June (3 weeks ago) I was told it 'lasts' 17 weeks.

It is very difficult to speak to a doctor at the clinic and I tried asking for a review appt (was told earliest is Sept) I may try the out of hours number??

What I would like to know is what was/is their proposed protocol (I am an oldie) and can Mr .T summarise his immune findings and proposed treatment (assumning I was to achieve a below-10 FSH again)

I know that his treatments are very good. I dont know if they are practised abroad (eg Clexane ivig etc) and it would help for me to take the proposals to a new consultant (going to Hong Kong)

I am fed up I cant cycle this month but actually feel bit stressed w move and not suprised result isnt good.

Anybody any experience with moving clinics or taking a Mr T protocol elsewhere - please help. I'm frustrated that I had my consultation in February and had immune testing and only had first FSH now. Though I appreciate Mr T not wanting rush like other clinics simply cos of age.

Very grateful for any info/advice
Louise xx
 

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Hi Louise,

Sorry to hear you can't cycle this month - I know its very frustrating.

You could try writing Mr T a letter explaining your circumstances and asking him to send you a letter with your immune results and proposed treatment. You could also ask the girls in the office for photocopies of your notes.
I know Mr T is very very busy at the moment and it is very difficult to get hold of him.

You might also see if he recommends another clinic in HK.

As you say you could also phone the emergency number and ask for their advice too.

I have a friend who did ICSI successfully in HK ( with immune issues ), I could find out the name of her clinic as I think they did all the immune testing and IVIG as well. Let me know if you want this clinic address.

Take Care
Audrey

 

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Discussion Starter · #4 ·
Audrey

Yes, pleeeease! Any help very much needed. Unless I pursue now I may aswell give up - I'll be too old. Help!
Am getting bit frustrated. Was thinking of writing a letter now.
Does Mr T answer correspondence (I know sill question but still asking it!)

Louise xx
 

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Louise,

I have had a response from Mr T to a letter I wrote to him so I am sure he would be keen to help you.

I have just sent my friend an e-mail to get the name of the clinic and the doctor she used. I probably won't a reply till tomorrow now so as soon as I get it I will forward it to you.

I don't actually know the emergency number but if you call the ARGC number after 8pm then it should be on the answer phone message at that time.

Good Luck
Audrey
 

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Discussion Starter · #6 ·
Hello Audrey

I am really very grateful.Thanks for your advice and answering me. I was in my little world getting very negative and now feel a bit better.
I have drafted a letter and will send it tomorrow.

I will wait for your friend's reply.

Many many thanks
Louise
 

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Hi Louise,

Sorry to hear about the high FSH and being unable to cycle before you move.

Mr T. uses the protocol designed by Dr Beer but tweaks it for individual people as per timing.

Dr Beer suggested for me:

1. Humira for one month before cycle of conception (downregging will occur here if doing a long cycle)
2. Humira during cycle of conception

For women with high TNF-a he asks them to do a blood test after the first month to see if the levels have come down enough.

2. IVIG on day 6 of conception cycle
3. IVIG 2 days before ET

(the two IVIG's were based on my NK levels suppression under IVIG in Dr Beers test)

4. Steroids (Dex or Pred) if indicated from EC
5. Clexane from EC

6. IVIG if positive
7. continue Clexane if positive
8. continue steroids if positive

Hope that this helps!  Good luck.

With warmest regards,
 

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Discussion Starter · #8 ·
Hi Flopsy

Thanks for the info on immune drug protocols.

I doubt I would have a down-reg as I'm well over 40 but am interested in Mr T's choice of stimms for a short protocol.

I have used Menopur, Puregon and a combination of both in other clinic. Also both high and moderate doses with little real difference in yield.

Do ARGC use similar. Do they opt for BIG doses?

Thanks a lot
Louise
 

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Hi Louise,
I too am 40+ and Mr T put me on short protocol of 450ui of Puregon per day (over 10 days), the highest dosage I believe. Its expensive at £360 per cartridge (900ui), but I had 7 eggs retrieved last week. I was d/r simultaneously, to prevent natural ovulation.

Mr T tailors the treatment to the iindividual so this does not mean this is what he would do for you. The daily blood tests enables him to alter the treatment on a daily basis, though mine never needed to change, except the day before trigger when I had to take my injection early as my levels had started to drop.

 

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Hi Louise,

I'm probably the wrong person to ask about protocols at the ARGC as this is where my fresh cycle went terribly wrong.

Although I am over 40 we tried a long cycle and I did not respond to stimms when we got to that part.  This was something that I had been concerned about and had expressed concern over.  Mr T. makes the decision (he said) on the womans FSH levels.

We tried Gonal-F and Menopur. However it was not until I switched back to Puregon (that I had responded to well before ) that things improved.

We did not try any big doses until it was obvious that I was not responding.

Good luck!

With warmest regards,
 

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Hi Louise,

i used to live in hk for 8 years and came back 1 and a half years ago.  i doubt hey do immune therapy ,as far as i can tell they only do in a handful of places here and usa.  have you thought of coming over for your treatment cycle- i have spoken to lots of girls from all over the world who ended up doing this , monitoring levels abroad until they were the right level and then coming over for the month.  Mr T tailor makes his treatment at each stage and i dont think it is as simple as passing notes onto somehwere esle. However, i am sure he will avise and respond to your letter so i fingers crossed you can work it all out.  Sorry i cant be of much further help, but where there is a will there is a way!  good luck ^rainbow^
Love
Abbey
x
 

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Hi Louise

Just saw Abbey's mail about there not being immune treatment in HK - as I said in my earlier message there definitely is as my friend ( who is a doctor and lives in HK ) had IVIg and a successful ICSI cycle last year in HK. I got a brief e-mail from her and she said there are 3 doctors who do IVIg for fertility in HK. The doctor she used works under the instruction of Dr Beer in Chicago so would be quite close to what Mr T would do in terms of immune treatment.
She also said that the treatment is exhorbitantly expensive. She is just sending me all the details of the clinics, and doctors now with her comments. I had been talking to her about the treatment she had and comparing it to mine ( as I have been having IVIg ) and it doesn't seem that different from mine ( in terms of immune treatments anyway ).

Talk to you soon
Audrey

 

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Hi Louise,

I have got all the info now on doctors and clinics that do immune treatment in HK.  My friend is recommending one doctor ( who did her fertilty and immune treatment ) but has also listed two other doctors as well that use immune therapy in fertioity treatment. My friend's e-mail is very long so I have sent it to you as an IM as she has written a lot of comments in about how to deal with the clinics and doctors in HK plus her opinions.

If you have any questions on what she has written just IM me and I will be happy to pass the questions on.

Let me know that you have got the IM ok as the e-mail is very very long  :)

Good Luck
Audrey
 

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Hi Louise- so sorry i didn't read Audreys earier post when i posted mine- that's great news that they now do it in HK.  Sounds like it is all gong to work out for you.  You must  be v relieved.  Wishing you the very best of luck and lots of baby dust.  ^fairydust^When are you off to HK- you will love it out there.

(apologies to Audrey too- great info)

Love
Abbey
 

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Discussion Starter · #16 ·
Hello Abbey

Thanks Sparkle  your msg about clinics there in Hong Kong is very helpful.

I just was a bit worried though about price. Can your friend say how much?

Will IM you with my email address its probably simpler.

Love Plink (Louise)

Abbey I have IM you with my email address too. Love to hear your experience. Well done on your BFP's girls!!

 
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