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Mavis

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Saturday, December 20th 2008, 11:14am

Has anyone said NO to immune testing/Humira?

Hello everyone,
This humira thing is playing on my mind...

We are about to start treatment in ARGC next year. When we had our initial consultation, the doctor we saw didn't insist on immune testing or hysteroscopy. (At that time, I was technically pregnant, but my betas weren't very good, so I had only had one early loss by that point).

Yesterday, DH spoke to a nurse at the clinic, and she said that it was in my notes that I needed to have immune testing (780 quid, ouch!)

I don't think I fit the criteria of needing to be investigated for immune issues (yet) ? My first pregnancy my baby was very poorly, and my next two pregnancies were losses at 5 and 6 weeks respectively.

I think it is more likely that my losses were due to chromosome problems, scars in my uterus after a late D&C, or just "bad luck". If I have another early loss, I think would revisit immune testing then...

It doesn't help that my DH is an ex-immunologist. Although he knows nothing about this IVF stuff, he has very strong opinions about the immune drugs and the costs.

I'm not quite sure what my question is in all of this. I would find having another failed ICSI attempt soul-destroying and I want to do everything possible to maximize my chances. But at the same time I don't want to take the immune drugs ?(

Has anyone else struggled with this decision?

Sorry for rambling....
WTW
xxx

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10 years, 5 cycles, and 3 beautiful children.
My family is complete :heart: :heart: :heart:

JENSQUI

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Saturday, December 20th 2008, 12:57pm

RE: Has anyone said NO to immune testing/Humira?

Hi there WTW!

I'm in a completely different situation to you I know - I am lucky enough to be able to conceive without tx (though it doesn't feel like it comes easily). Other than people on FZ noone has ever suggested immune testing to me. But I didn't want to read and run and I think we may have similar thoughts about our losses.

When my recurrent m/c tests came back as clear I had a mixture of emotions - it would have been nice to have had a potential answer and know that something different would be tried next time (which, is now this time). So I was a little disappointed but also relieved as I felt there was still hope that the next time it would be okay. I did briefly mull over the idea of immune testing but deep down I have always felt that my losses were because there was something wrong with the embryos and nothing to do with my body.

I don;t know much about immune testing or the humira treatment. Whilst I don't do it as a job now, I do have a research background (not medical research) and it has made me question everything I read! I'll never believe a media headline, I'll always want to read the research paper so that I can make up my own mind. As I say, I didn't consider immune testing/ treatment enough to start digging around looking for trials on it. I don't know if you've looked for any?
I have seen a weighty thread on fertilityfriends about humira - have you seen that? Again it will be anecdotal evidence but may be worth a read.

Sorry I couldn't really answer your question as I was never in a position to make a decision about it.

xx


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

kar1

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Saturday, December 20th 2008, 6:22pm

so is your dh against it?

ok here is what i think and i have thought about it all long and hard and read and researched lots and i mean lots

i decided on a uNK cell biospy as this is the test that made sense in my head, the cells that are tested are from the uterus, i went ahead and had the biospy done and it was found that i do have elevated uNK cells to which prednisonlone will be prescribe

as for ivig and humira well im not a great believer and think this is very much a personal choice, i have thought many times about full immune testing aka the chicago test but something in my head says no. for a start i do not want to do ivig until it has been trialled ( it is now and results are due in jan) plus the cost. i think that if the immune doctors wanted to prove it then they would do a randomised controlled study and give this treatment as free to get ladies to do the trial (this is what they have done it america).

just incase you didnt know there is a new treatment for immune issue and its called intripids and its much much cheaper, at the moment only dr gorgy in the uk will prescribe it but along side ivig also

my advice would be read dr beer;s book is your body baby friendly, have a long hard think about it all.

im also under the impression that if you cycle at the argc and do immune tests there, these might not carry any weight if you were to move clinics, if i ever go down the full immune testing path i personally would have 1 immune con, i hear dr gorgy is very good and then a seperate clinic.

if you have any questions ask away and i will try with the best of my knowlege to answer them
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Mavis

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Saturday, December 20th 2008, 10:35pm

Hi Jensqui and Kara,
Thank you so much for your replies! I really appreciate it, am finding all of this so confusing ?(

Jensqui - I too believe that my early losses were because something was wrong with my embies, and I do not believe anything in the media! I did do a lot of research into IVF before I started, and was depressed at the lack of evidence for common IVF practices. It's not new, yet there aren't many decent systematic reviews out there. Grhhhhh. So I stopped reading! But I think it is time I did a little more research... I guess I'm afraid at what I will find out.

Kara - my DH is against the immune testing at this point, although I think he is being motivated by money more than science! But he is suspicious of drugs when they are being used for non-licensed purposes, and I agree with him on that. Steroids are very effective drugs, and I can see how they could help sustain a pregnancy. I would take them if a problem was found. But IVIG and humira... I just can't get my head around that. Thanks for letting me know about the book, I will get a copy.

When we found out that DH had azoospermia, I think we were lucky in a way because at least we had a clear reason for our infertility. (It was devastating, and in our case untreatable, but at least we had a reason.) If we have immune problems on top of that, I'm not quite sure what we would do. It kind of feels like the man upstairs is trying to tell us something!

xxx

My Diary
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My family is complete :heart: :heart: :heart:

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Saturday, December 20th 2008, 10:45pm

has your husband had a sperm dna fragmentatio test?
TTC 12 years

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lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Mavis

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Saturday, December 20th 2008, 10:58pm

I don't think he has, but he had very few sperm on the biopsy, most were dead and the ones that did move couldn't swim, only twitched. We tried ICSI with the twitchers anyway, but none of the 10 eggs fertilized (and the remaining 9 eggs all fertilized with the donor). So we decided to keep going down the donor route...

At the ARGC, they offered to investigate using DH for ICSI, but we turned them down. I guess we have already grieved and moved on. We've already spent so much money and put our lives on hold, we need to maximise our chances.

My Diary
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Saturday, December 20th 2008, 11:03pm

ah ok hun so that kinda rules out that problem, do you know if the donors have proven fertility?

you could go to liverpool and have a uNK cell biospy for free as you have had 3 losses

you would need to agree to a trial :P

i personally believe it this type of immune testing
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Mavis

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Saturday, December 20th 2008, 11:15pm

We've tried two donors so far, and neither have proven fertility. Both times, we were told we had picked "unpopular donors"! :snigger: Don't know why! So I don't think they had the chance to have pregnancies.

I am RH negative, and both donors were positive, so I am a little worried that that might somehow affect things? I haven't been given the anti-D when I needed it, so I could be sensitized. Keep meaning to get myself checked, must do that soon.

Is there a website about the trial? That sounds very interesting. I am guessing I would have to pay for the biopsy though...(in first pregnancy, my baby was poorly, I made it to the second trimester but then 2 abnormal US scans).

I think if I did have another early loss (hope to God I don't!), I would see an immunology consultant and have the uterine biopsy - that seems like a good first step.

Thanks for all your help Kara!
xxx

My Diary
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Saturday, December 20th 2008, 11:19pm

helping a doc with a trial, this could help many

this is a good start


so sorry to hear your first baby was poorly, that must have been heart breaking. my first loss was heart breaking, its changes you i think

i have more info that i could email you hunni, just drop me a pm with your email address

it could be an option for you but the argc will still wana do full immune test im sure,
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Mavis

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Saturday, December 20th 2008, 11:48pm

Thanks so much Kara,
You've been SO HELPFUL!
xxx

My Diary
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My family is complete :heart: :heart: :heart:

Minerva

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Sunday, December 21st 2008, 9:25am

Hi WTW

Well you know my experience with Humira and although I think it's safe to say I was very unlucky, I would make sure you feel fully informed about the potential consequences should you opt for this route. The problem we encountered is the lack of relevant scientific research; the only paper we found is this, from Alan Beer - repro-med.net/info/qabeer_08-04.pdf. It is hard to evaluate the pros/cons when a drug - unlicensed for fertility treatment - is prescribed. You will find plenty of ringing endorsements for Humira on the internet (esp. ARGC forums) but when you've been successful it's easy to adopt this stance. If, on the other hand, you find yourself in the 10% (like me) who experience the obverse reaction to the one predicted then your position starts to change. I wish I'd known then what I know now; I would have probably said no. What's very interesting is that the Sher institutes in the US (with good results & much less selective than the ARGC) entirely refute the TNF/Humira claims and suggest IVIg and/or steroids. Geoff Sher was one of the first to advocate Humira but discontinued its use about 5 years ago. Check out their discussion boards; you can post questions and the consultants (or REs in US terms!) will respond. Often on the same day.

I don't intend this post to be negative but I do wish I'd be a little more cautious and a lot more thorough at the time. As Jensqui says: question everything :smile:

Minerva xxx
Me - 33, DH - 35 TTC 15mths, MF
ICSI April/May (Priory) - BFN
ICSI Sept/Oct (ARGC) - BFP, M/C at 5 weeks

Fancellu

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Sunday, December 21st 2008, 11:04am

RE: Has anyone said NO to immune testing/Humira?

Willowthewisp,

It is not a easy decision. I have a 3 years old son and then 3 early m/cs, saw Dr Shehata on NHS, and he couldn't find the problem. My frustration was not finding the answer. So I decided to do the full immune tests and found out I have a shared Antigen with DH, my Th1/Th2 are high and my CD56 is raised and probably more problems from the tests which I am waiting for the results.I am feeling better now because I now finally have got some answers. Alan Beer centre probably will recommend Humira for my high TNF, but it is up to you to decide whether to take it or search for alternative treatments. I am currently take mushroom tablets to reduce my NKCs instead of Steroids.

Whether to do the immune testing also depends on how much you want a child. It will cost about £1300, but it is still a lot less than doing IVF. DH is not keen on immune drugs but does support to do more testing to find the problems in my body. At the end of the day it is the decision what you feel comfortable with.

Best wishes and good luck with whatever you decide to do.

XXX

Mavis

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Sunday, December 21st 2008, 12:41pm

Thanks so much Minerva, and Fancellu, I am so sorry about your losses.

I guess at this point, I know that humira has significant side effects which are common (1 in 10!) and there is currently not enough evidence for it to be licensed for use in IVF treatment.

I am going to take a break from IVF thoughts over Christmas (well, try to anyway). My next appt. at ARGC will be on Jan 22ish (depends on when my next day one is). So definitely before then, I will do some reading, use PubMed and Cochrane, post on the discussion boards (thanks Minerva!) and I will make sure I post the thesis of my findings back in here!

Wishing everyone a very happy Christmas,
Lots of love,
WTW
xxx

My Diary
10 years, 5 cycles, and 3 beautiful children.
My family is complete :heart: :heart: :heart:

Duffymoon

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Sunday, December 21st 2008, 1:00pm

:hello: WTW

This thread is a little bit too close to home for me right this minute as I was literally supposed to be jabbing Humira on Friday just. I got cold feet though having read the long long long list of side effects and of course the paragraph about don't get pregnant within 5 months of taking it really threw me.

I'm so *should I/shouldn't I* it's untrue.

I have high TNF (42) which is why it was prescribed though I do wonder whether it may have been worth, or even may still be worth just trying with steroids first.

I feel each ICSI has almost been an experiment, each time getting closer though I've yet to get a bfp. :sadface:

My DH is azoospermic too and we're persevering with using his sperm which have successfully fertilised my eggs in the past.

Our last cycle we got to blastocysts which obviously told us huge amounts more!

It's such a tough decision and one I will be mulling over for a week or two. At some point, I may just say sod it, go to the fridge and do it, but until that happens, I'm going to try and do research too.

I changed clinic in the autumn and I'm now under CARE notts hence the immune tests and consequently pro humira approach for me. However, I'm really tempted to email my con at Nurture as I dare say he'll give me a different take on it and may well say not to bother.

It's all so confusing and frustrating that there's not one stance on it - of course it takes consultants to be have bold choices for medicine to move on but there's a huge part of me that does feel like a guinea pig!

Sorry - I've probably not helped very much but just wanted to say that i totally understand why you're questioning what's been recommended.

xxx


4 x ICSI BFN
5th time :BFP:
:boy: :girl:




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Sunday, December 21st 2008, 1:31pm

I think it's really good that we're able to have this discussion and share our thoughts and anxieties. Duffymoon, I hope I haven't unsettled you; I just wanted to encourage Willow - and others - to make informed choices, something I failed to do! It is a big decision and Humira may be the right option for you, but I think it's equally important to acknowledge that many, many women conceive with high TNFs and NO Humira. I am not advocating one approach over another, I just think as patients we often feel like passive participants in our own treatment and occasionally it's good to challenge and question.

Wishing all of you ladies a Happy Christmas (even if I am boycotting it this year!) and I look forward to BFPs for all of us in 2009.
WTW - beware of selection boxes containing toffee crisps :winking:

M xxx
Me - 33, DH - 35 TTC 15mths, MF
ICSI April/May (Priory) - BFN
ICSI Sept/Oct (ARGC) - BFP, M/C at 5 weeks

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Sunday, December 21st 2008, 1:45pm

RE: Has anyone said NO to immune testing/Humira?

Quoted

Originally posted by Fancellu
Whether to do the immune testing also depends on how much you want a child.


totally disagree, but we are in different situations so i can understand your comment also. immune testing is expensive and when added to ivf/drugs its thousands and thousands and i do feel that there are doctors out there that purely make money from it, its such a huge business.

i do believe that the immune system plays an important role in pregnancy but for me i want proof before people start taken vials of blood from my arm when it makes no sense in my head. im not saying i will never do it but not yet.

Humira is very much a wonder drugs but not for fertility! ivf is like russia roulette, i would take as i have known people who now can not get pregnant after taking it. the cells within the uteurs are often helpful cells and clear the way for implantation my fear is too many drugs will have an effect on these helper cells too

girls this is such an interesting subject
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

kar1

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Sunday, December 21st 2008, 1:49pm

duffymoon i have often been caught in a situation where i am not sure which way to turn and i listen to what my instinct says and so far its been right
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Mavis

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Sunday, December 21st 2008, 2:25pm

As if IVF wasn't hard enough without all of this!

Hi Duffy, I hope you reach the decision that is right for you (and I'm sorry about the bad timing of this thread). Do you think you could email your consultant at Nuture? You never know, he may say it is worth a shot, which would make the "sod it" moment a little less scary. But I know it must have taken a lot to get to this point, and to get a different opinion now would just add to the stress. Whatever you decide, I wish you the very best of luck. Hopefully I will be cycling with you next year.

I think I am more uncertain now than when I first posted. But I know what to do next, and it is very nice to know that I am not alone in all this.

Thank you everyone
xxx

My Diary
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My family is complete :heart: :heart: :heart:

Mavis

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Sunday, December 21st 2008, 3:39pm

Well, I'm back already! Couldn't help looking up humira, and I only found one research article about it (from December 2008). I'll post the abstract below.

I don't understand how the numbers add up, and there is no mention of complications/drop out rates. So I will track down the original paper and share it with whoever is interested.

And then I will celebrate the Christmas hols!
WTW
xxx

My Diary
10 years, 5 cycles, and 3 beautiful children.
My family is complete :heart: :heart: :heart:

This post has been edited 1 times, last edit by "Mavis" (Dec 21st 2008, 3:44pm)


Mavis

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Sunday, December 21st 2008, 3:41pm

Treatment with Adalimumab (Humira) and Intravenous Immunoglobulin Improves Pregnancy Rates in Women Undergoing IVF.

http://www.ncbi.nlm.nih.gov/pubmed/19055656

Winger EE, Reed JL, Ashoush S, Ahuja S, El-Toukhy T, Taranissi M.

Laboratory for Reproductive Medicine and Immunology, San Francisco, CA, USA.

Problem
The purpose of this study was to investigate whether treatment with TNF-alpha inhibitors and/or intravenous immunoglobulin (IVIG) increases in vitro fertilization (IVF) success rates among young (<38 years) women with infertility and T helper 1/T helper 2 cytokine elevation.

Method of study
Seventy-five sub-fertile women with Th1/Th2 cytokine elevation were divided into four groups:
Group I: Forty-one patients using both IVIG and Adalimumab
Group II: Twenty-three patients using IVIG
Group III: Six patients using Humira
Group IV: Five patients using no IVIG or Humira

Results
The implantation rate (number of gestational sacs per embryo transferred, with an average of two embryos transferred by cycle) was 59% (50/85), 47% (21/45), 31% (4/13) and 0% (0/9) for groups I, II, III and IV respectively.

The clinical pregnancy rate (fetal heart activity per IVF cycle started) was 80% (33/41), 57% (13/23), 50% (3/6) and 0% (0/5) and the live birth rate was 73% (30/41), 52% (12/23), 50% (3/6) and 0% (0/5) respectively.

There was a significant improvement in implantation, clinical pregnancy and live birth rates for group I versus group IV (P = 0.0007, 0.0009, and 0.003, respectively) and for group II versus group IV (P = 0.009, 0.04 and 0.05, respectively).

Conclusion
The use of a TNF-alpha inhibitor and IVIG significantly improves IVF outcome in young infertile women with Th1/Th2 cytokine elevation.

My Diary
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My family is complete :heart: :heart: :heart:

This post has been edited 1 times, last edit by "Mavis" (Dec 21st 2008, 3:43pm)


Minerva

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Sunday, December 21st 2008, 5:27pm

That's a really interesting (& thought provoking) study WTW. I have no doubt that Humira can be - and clearly is - beneficial, I think my frustration stems from the failure of the clinic to warn me that in 10% of cases Humira either makes no difference, or potentially (as in my situation) makes things considerably worse. My TNFs shot up after Humira, causing high NK cell activation and necessitating IVIg!! I fully concede that I am in a small, unfortunate minority but I do wish I'd known this beforehand. I am sticking to IVIg (if needed) next time because I know Humira doesn't work for me. But I am just one case. I wish you and Duffy all the best whatever path you decide to take.

If you don't mind sharing the original paper, I'd be very interested to read it. I guess my only concern stems from the relatively small & inconsistent sample sizes. Just call me Devil's Advocate :D

M xxx
Me - 33, DH - 35 TTC 15mths, MF
ICSI April/May (Priory) - BFN
ICSI Sept/Oct (ARGC) - BFP, M/C at 5 weeks

Duffymoon

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Sunday, December 21st 2008, 5:42pm

Hi girls

Thanks willow for that paper - don't quite get the implantation numbers as they're clearly above 75?!

I was just doing some googling and came across this report. This isn't to do with whether it can improve your chances or make a difference positive or negative, but it does give some comfort as to whether it can cause abnormalities in babies.

In summary, there were three main groups, those that take Humira for Rheumatoid Arthritis (17), those with RA but who did not take Humira (42) and those without RA and obviously not taking Humira (15).

The percentage for live born was slighly higher for the last group but is effectively all three groups within the expected range (lowest was 88%).

For those taking Humira, none have shown any malformations or deformations and only one was pre-term (less than 37 weeks) which bears comparison to the other groups.

It's an ongoing study and obviously the numbers are not yet that high and it may be updated relatively soon as this report was last updated Dec 2006.

http://www.otispregnancy.org/pdf/AI_AAD_Humira.pdf

Going to do some more digging !

xxx


4 x ICSI BFN
5th time :BFP:
:boy: :girl:




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Sunday, December 21st 2008, 6:17pm

the major down fall with the study is no placebo effect

the gold standard way to study is a randomised study which includes placebo

Dr T gave a speech at the british fertility society confrence in liverpool back in september and ONLY talk of the successes, this we no is not the case.

i will be very very interesting when the ivig study comes out in jan 2009

i am loving this thread girls, this is how we can all learn

would post more but have to go to a party and get drunk lol
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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Monday, December 22nd 2008, 9:30am

Hi Girls

I am joining this thread late and see how much you have covered already!

WTW - I am not quite sure where the Humira has come from with you, has someone suggested that you need it for treatment, have you had immune tests done to say you need Humira?

Like Fancellau said, I have had 4 m/c's, all NHS / UK tests clear, was given steroids (25mg prednisalone) plus fragmin for last pregnancy, still miscarried. Was told I didn't have any problems, high NK's, nada.

Decided (after a lot of discussion and after trying steroids) that we would go for immune tests and the likelihood after 4 m/c's that the embryo just "wasn't right" or abnormal is not likely (in my opinion and some doctors opinion) In my mind something was wrong. To cut a long story short you can see my signature. I was prescribed Humira for my TH1/TH2's which were 36 (needed to be below 30). I did two injections and my levels lowered below 30. I had no real side effects other than a few headaches. Yes they were expensive but we had to give it a go. We have also been prescribed IVIG as steroids are not enough to lower my NK's which are at 22% (need to be below 10%) from the testing they can see IVIG works for me. I have just ordered my first IVIG and i will have this first week of january after my period arrives (I am trying naturally). There are no known side effects from IVIG.

Depending on who you talk to will depend on what opinion you get. For me I am going to try the immune protocol because there is nothing else wrong and nothing left to try, we have nothing to lose.

A year ago I would never of considered taking so many drugs but then now I would try anything if it works. It is expensive but because its not so readily available over here. Humira and IVIG have been tested in the US quite extensively. If you haven't read the Alan Beer book, do read and buy it.

Only you and your DH can decide whether the testing is for you. It would be recommended by Beer for anyone who has had more than 2 m/c's or 2/3 failed IVF's (depending on your age). There is some info in this section which you can read in the meantime.

Good luck with whatever you decide.

xx
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Saturday, January 17th 2009, 11:03pm

Quoted

Originally posted by Blondie

WTW - I am not quite sure where the Humira has come from with you, has someone suggested that you need it for treatment, have you had immune tests done to say you need Humira?



Hi Blondie,
My new clinic wants to do immune testing, and DH and I were thinking through the consequences and possible treatments available. So I don't actually know if I have immune issues yet.

We have male factor infertility, and since starting ICSI I have had two early losses (4.5 weeks and 5.5 weeks). I'm under 35 years old, so strictly speaking, I think I would need to go through another miscarriage before getting the immune tests done? Not that I would want to do that :sadface:

I am enjoying Alan Beer's book (what a good description of the immune system!). I guess I am veering a little bit towards having the tests, but DH has now made up his mind not to do them. He feels pretty strongly that the tests and treatment are not worth the money. He wants a doctor to convince him otherwise.... We go back to my clinic on my next CD1, which should be Tuesday.

wtw
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Sunday, January 18th 2009, 4:37pm

Hi WTW

The only immune tests you may get offered over here in the UK without paying for them would be the Natural Killer cells test.

When you say you have had 2 m/c's and would need 3 to have the tests this usually applys to recurrent miscarriage tests rather than immune tests.

Are you with ARCG or CARE?

It is a big decision as to whether you should have them or not and a personal one...

XX
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Monday, January 19th 2009, 9:34am

Me again WTW. Have you had the 'standard' recurrent m/c tests? If you haven't had those I think I would do before going down the immune testing route. Even if you haven't had 3 m/cs you may still be able to get these done via the NHS - Polly Pocket is my example of someone who has had 2 m/cs but still had the tests.

Sorry, you've probably had them already.
xx


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
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Monday, January 19th 2009, 9:49am

Quoted

Originally posted by Blondie
Hi WTW

The only immune tests you may get offered over here in the UK without paying for them would be the Natural Killer cells test.

When you say you have had 2 m/c's and would need 3 to have the tests this usually applys to recurrent miscarriage tests rather than immune tests.

Are you with ARCG or CARE?

It is a big decision as to whether you should have them or not and a personal one...

XX


Hi Blondie,
I am with the ARGC (just started there).
I didn't realize the 3 m/c rule didn't apply for immune tests, thanks for that.
w
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Monday, January 19th 2009, 9:51am

Quoted

Originally posted by JENSQUI
Me again WTW. Have you had the 'standard' recurrent m/c tests? If you haven't had those I think I would do before going down the immune testing route. Even if you haven't had 3 m/cs you may still be able to get these done via the NHS - Polly Pocket is my example of someone who has had 2 m/cs but still had the tests.

Sorry, you've probably had them already.
xx


Thanks for this Jensqui, actually no! I haven't been tested for lupus or anticardiolipin... So far I've only had my chromosomes tested.

My GP's eyes tend to glaze over whenever I mention anything IVF-related, and he now lets me go directly to the phlebotomist to ask for the tests I need. I might aswell draw up a shopping list.

wtw
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Monday, January 19th 2009, 9:58am

definitely worth doing - you'd kick yourself if you went down the immune route only to find out later that it could have been something more 'usual'.

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BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
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Wednesday, February 4th 2009, 7:27pm

Humira - bad press :(

Hi

I really don't want to scaremonger, but I've heard a few bad things about Humira :( which is bad as a few of us on here are taking/ about to take it, including me.

http://health.groups.yahoo.com/group/imm…=e&var=1&tidx=1

thoughts anyone?

thanks

Lou x
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Wednesday, February 4th 2009, 7:38pm

yeah i have heard this before and personally i would not take as i have had implantation/mc

i think it can be of help to ladies who have never had implantation and have seen this in many ladies.

if you turn it round i have also seen ladies who concieved and then mc take it and then they don't get pregnant. immune drugs are pretty much like picking a needle in a haystack, no one really knows what will work. our immune system changes all the time. i am not a firm believer in full immune tests as most studies do prove some effect yet none of these rich doctors will do a randomised study with placebo as this would mean paying for someones treatment.

a friend of mine was told she needed it but chose not to take and bingo she got pregnant on her 11th treatment with a donor embryo (9 treatment were donor)

its a clever drug thats for sure but whether its the right drug for you, well only that person can decide, if you have had it then go with it and try not to focus on the bad press as you could get bad press with anything

these are my thoughts
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Wednesday, February 4th 2009, 8:39pm

Thanks Kar1

A lot to think about ?(

x
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34

Thursday, February 5th 2009, 11:30am

On the yahoo immunology group someone wrote;

"Dr Sher does not do LIT and Humaria, DrBeer does and it works, it is really up to you The humaria is meant to bring your level of TH1:TH2 to 30, so you are not oversuppresed So it works for a lot of people, some people have a flare to it but Dr Beer explained that in his book. Dr Sher was against intralipids before and would only do Ivig, but now he is for intralipids As for me my TH1:TH2 level is 51 and i would be having humaria, i would do anything that would work"

Like I say, alot to think about, the statement that stands out to mr is Dr Sher was against intralipids before and would only do Ivig, but now he is for intralipids But maybe I'm desparately fishing for good comments! ?(

just thinking aloud!

Lou x
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This post has been edited 1 times, last edit by "Louloulouisa" (Feb 5th 2009, 11:31am)


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Friday, February 6th 2009, 8:20am

It's a difficult choice to make whether to take a drug or not. I have down the Humira and since then have not conceived....But then I had done LIT and IVIG too so I think has one of them made a difference to me conceiving or is it just bad luck.

Lou - are you deciding whether to try intralipids? Alan Beer still not approving, they say that in the test tube it does the same to NK cells as IVIG but say they do not have enough studies to show that it has a lasting effect like IVIG...

X
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36

Friday, February 6th 2009, 5:06pm

Hi Blondie

I imagine I probably will take Humira and Intralipids... I can't really see any other option that we can afford???

TTC wthout treatment isn't working, IVIG is tooooooo expensive... so we may as well go for Humira and Intralipids.

Lou xxx
Need reproductive immunology success stories please 2 help others :)

have u got immune issues?




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