Fertility Friends Support Forum banner
Status
Not open for further replies.
1 - 20 of 509 Posts

·
Registered
Joined
·
61 Posts
Discussion Starter · #1 ·
dear fellow humira takers as victoria suggested it is getting pretty confusing having 3 threads going on same subject so shall we all just use this thread now?

I was also thinking on tube this morning, given that Dr Beer says IVF/ICSI drugs can cause NKC to flare anyway shouldn't be all be considering IUI or "natural" IVF/ICSI?

best wishes

chablis
 

·
Registered
Joined
·
957 Posts
Hi Everyone - v sensible to bring it together on a new thread, well done Chablis

Victoria - I think you can form good embryos even if you are 'incompatible', but it is really important for the switching off process that's required for implantation and ongoing pregnancy. People who don't have immune problems presumably have babies by people they are 'incompatible' with all the time without problems.

So I think it is the immune problem that matters not the incompatability.....but I am just guessing. Particularly as there isn't anything you can do about the incompatability issue anyway. All the treatments ate to stop us rejecting the embryo whatever it is like, i think.

All the way through medical school and all the way through the last 11 years of practising medicine I have struggled to understand immunology!! It is incredibly complex and blows my mind. People who study immunology tend to be very spoddy types who don't get out much- but God I wish I had married one now!!

On the natural vs IVF debate - it's the dream to conceive naturally isn't it, in your own bedroom, without any of the crowd of folk being involved. But it's scary to put your faith back in nature when it has let you down for so long in the past. But also, there is a strange feeling of being dependent on seeing those follicles grow and knowing they have fertilised and been put back. However Dr Beer has said I must try naturally and so I shall! But how will I know if I have made an embryo and it just couldn't implant instead of knowing that I made a rubbish egg and it couldn't be fertilised? All I will know is that I didn't get pregnant...

..or that I did get pregnant..in which case, who cares?!

Happy Friday to you all!

Kate

 

·
Registered
Joined
·
67 Posts
Hi everyone

Getting a bit anxious because appt for Humira consultation is on Tuesday & my learning curve has been practically vertical over the last week - thanks to you clever girlies.

Now I need to be prepared with the questions we're all asking. Anyone have any suggestions?

I thought why have IVIG as well as Humira?

Should we try naturally before we go for a new icsi cycle?

Has anyone been successful at argc?

Help!
Any ideas?

Kate, with regards to trying naturally, probably teaching grandmother to suck eggs but there is a book that I read that made me so aware of what was going on at every moment of the month that it bowled me over. Name is "Taking Charge of Your Fertility' by Toni Weschler. Have you ever tried charting? It has helped me to feel as though I am active in the whole challenge and really seems to indicate what is going on.

Just an idea - sorry to say it hasn't made me pregnant but it has made me feel like I have a teensy bit of control. Something we all could do with I suppose.

Good luck & all ideas gratefully received

Ellie
x
 

·
Registered
Joined
·
9 Posts
Good Morning everyone on the new humira thread
I had a phone call from ellie at argc yesterday to say that i can start humira injections.Ive decided to wait until we get back off our hols in september,so i think i will start injection on 20 september.Will anybody else be on or starting humira around the same time?
I am still very apprehensive about taking it,even after the research and listening to Dr Beers chat,it feels like a minefield we are entering into.
emmi hope you are ok,when do you think you will be starting treatment?
hope you all have a great weekend
speak to you all soon
love fflopsy 2
 

·
Registered
Joined
·
67 Posts
Hi Fflopsy
Ithink I will begin in Sept too. Have heaf test in two weeks so will know then if I'm okay to go for it. Do you feel all your questions have been answered or are you just going with the flow & putting yourself in their hands. Maybe I should just stop panicing. Hate the lack of control don't you

Good luck anyway, not long to go!
Ellie
x
 

·
Registered
Joined
·
1,575 Posts
Hi Kate and girls,

This is just f.y.i. I don't know if it is of interest to you in the discussion on conceiving "naturally".

We are unable to conceive without ICSI as my DH is a cancer survivor so I did find this interesting.

***
Controlled natural in vitro fertilization may be an alternative for patients with repeated unexplained implantation failure and a high uterine natural killer cell count
     
Nathalie Lédée-Bataille   a,b,c*, Sylvie Dubanchet a, Jacques Kadoch c, Altina Castelo-Branco c, René Frydman b,c and Gérard Chaouat a Received 3 July 2003;revised 8 December 2003;accepted 8 December 2003.

Abstract
Patients with a history of repeated and unexplained implantation failure after IVF-embryo transfer and a high uterine natural killer cell count during estrogen-progestin treatment may benefit from controlled natural IVF-ET.
***

with love to all from,
Flopsy
 

·
Registered
Joined
·
61 Posts
Discussion Starter · #7 ·
check to see if working
 

·
Registered
Joined
·
67 Posts
Flopsy

I hadn't thought that wthis was an option. If you've had Humira & you're levels are lowered, do they stay low for a while or do they start to build up again when Humera stops. I wonder if they would still do IVIG if you were able to choose natural ivf.

Anyone know?
Question for Mr T I suppose.

V anxious about decision making moment tomorrow. Almost hope heaf test says no to Humira to avoid the decision ... ridiculous I know.

Happy Monday Girls...

Ellie
 

·
Registered
Joined
·
67 Posts
Sometimes I re-read my posts and wonder if I have any idea what I'm talking about. Is it a case of too much information?
Ellie
 

·
Registered
Joined
·
496 Posts
Hi Ladies

I know there was some discussion about the DQ ALPHA test ie. are you and Dh compitable in terms of having a baby. I asked the question on another board and this is the reply:

Good question. You ask why most UK patients are not DQ alpha tested.

I think one reason Dr Beer does not have UK patients DQ alpha tested
is because no UK doctors do LIT exactly the way that Dr Beer does it.
Granted, Dr Armstrong does LIT, but not according to Dr Beer's exact
protocol. And Dr Arnstrong has his own ideas when it should/ should
not be done. Plus (apparently) Dr Armstrong cannot do the LIT lately
due to some National Health Service issue (?)

Dr Quiroga in Nogales, on the other hand, .. really leaves the LIT
decisions up to Dr Beer.

That's the best explanation I can come up with. I agree more UK
patients need DQ alpha testing. Could help predict who is at high 
risk of pregnancy flare. I hope all of this changes soon.

Maybe you should ask Dr Beer this question as well.

Jane

 

·
Registered
Joined
·
155 Posts
Much better to have this one thread now.

Flopsy, my dh is also cancer survivor - so ICSI is our only option too.  However, maybe given your theory - natural FET is more likely to be successful???

I will probably be back on the Humira in Sept - got appt with Mr T tomorrow so will hopefully know after that when he thinks I should do FET.

Ellie - I am also going armed with questions:

NK and TNF levels – how did they react to treatment after IVIG since never tested?
Is it relevant that I got spotting even with the Gestone – i.e Progesterone levels?
Link from immune issues to low Seratonin levels
Have we been tested for compatibility?
Why have I had IVIG – was it really necessary – did it work, how did you know without testing my blood?
Would a surrogate help?
Is FET likely to be more successful as more natural?

Angie - thanks for you info on DQ Alpha testing.  What is LIT?

Victoria x


 

·
Registered
Joined
·
61 Posts
Discussion Starter · #12 ·
hi all, LIT is when your husbands blood (and a donors with high anti NK factor) is put into your blood, not permitted under UK law, girlfriend of mine at argc had to go to greece to have it done, at least you get to see the olympics! love chablis
 

·
Registered
Joined
·
61 Posts
Discussion Starter · #13 ·
ps I have to post quickly otherwise gets rejected. Dr Gorgy at ARGC said if humira didn't work then would try LIT - I think another way - although not first port of a call given legal situation - to bring down your NKC. Does anyone have a direct e mail address for DR Beer, I still haven't got my letter from him with details of additional tests he think i need, love chablis
 

·
Registered
Joined
·
155 Posts
thanks - will definately add this to my list of questions for tomorrow!!
 

·
Registered
Joined
·
957 Posts
Chablis

[email protected] is Dr Beer's personal email address - he charges for his replies so I am not sure if you need to be registered with him first but I would give it a go!

Other than that you can get Thomas (his PA/ side kick and man in charge of organising everything) on [email protected]

The address for Beer's clinics are [email protected] and [email protected] respectively.

Victoria: my progesterone levels were found to be low on cyclogest twice daily 400mg, and was tested then for anti-prog antibodies (and HCG and oestrogen) all of which were positive. I asked DB if he was happy forme to continue with just cyclogest for my cycle and he said 'no go for gestone'.
The reason I mention this is that in DB's introductory bumph he says that he has found better prog levels with cyclogest than with gestone...so I am confused yet again. I think I will have gestone and use cyclogest on the side (!) just to be sure.

Why didn't we get tested for compatability? We discussed it with DB and he said 'no need', but I can't see why. He was very focussed on the HUmira thing - do you think this is because he has lost FDA approval for LIT? Any thoughts?

Let us know anything wise you find out tomorrow!

Kate

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites
 

·
Registered
Joined
·
1,575 Posts
Hi Victoria,

Your list of q's sound like a good bunch. Be very interested to know the ansa's.

With regards to IVIG and NK response you are right to ask "how do we know that it worked?".

I think Dr Beer's theory is that if our NK reacted to the IVIG sufficently in the test-tube test, then they should react that way in real life.  However, it would be interesting to hear his thoughts on the possibility that this did not happen.

On our test results in showed that my NK levels dropped very well after being exposed to IVIG in the test-tube at a lowish level.  That is why I "only" had IVIG on 2 dats of my FET cycle.

I've got a query over the amount of IVIG given and am currently checking with his clinic as to the script faxed over to Healthcare @home.

Good luck with your questions!

With love from,
 

·
Registered
Joined
·
155 Posts
Thanks Flopsy.

I'll post my answers (assuming Mr T has some!!) on Wednesday!
 

·
Registered
Joined
·
67 Posts
Thank you Victoria

Your ideas are a real help. Will pool all our knowledge in a hopefully, very informative debriefing tomorrow.

Thankyou also girls for the info on LIT. A teensy bit confused about this (So what's new?) but will throw it in to fox Mr T and see what he comes up with. Now have to pin dh to computer to make him listen to Beer talk so he can have some remote understanding and be prepared too.

Fingers crossed. Good luck Victoria, and everyone else of course.

Ellie
 

·
Registered
Joined
·
61 Posts
Discussion Starter · #19 ·
just been to zita wests for acupunture and nutrition - first yes a zita west patient has got pregnant naturally on humira (her ivf cycle was cancelled that month due to high fsh!). secondly i was wrong about taking angus castus with humira, since they don't know exactly what effects humira has they can't say if it is safe to take with agnus castus, i am going to carry on taking it as angus castus works on pituary gland which is totally seperate from what the Umira is doing - but that it my risk and they made it quite clear that they do not advise it. saw nutrionist and she said not to take the solgar protein poweder (doh! £18 wasted there) as too high a protein diet can stop you getting pregnant....i wish everyone would make up their minds. love chablis
 

·
Registered
Joined
·
61 Posts
Discussion Starter · #20 ·
plus if LIT and IVIG are both from pooled blood sources, why is IVIG permitted and LIT not? thanks chablis
 
1 - 20 of 509 Posts
Status
Not open for further replies.
Top