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Discussion Starter · #1 ·
I would really appreciate any advice from anyone on this matter. I was not sure where to post so opted for here - hope that this is okay?

I have already been through one cycle of ivf last October which was unsuccessful and am due to start another one next month. I felt quite ill during my 2ww ----- night sweats etc and so my consultant sent me for a TNF test amongst other immunity/antibody checks. The tumor necrosis factor (Natural Killer Cells) level was nearly ten times higher than the maximum expected level! There are a number of indicators to problems with immunity - I'm an insulin dependent diabetic and have the early signs of rheumatoid arthritis (both conditions are believed to be triggered by an auto-immune response). What I really would like to know is are there any success stories out there? How did you find the drugs affected you? I rarely succumb to colds etc but if I am to take medication designed to supress my immune system am I putting myself at risk? I know that this field is still very new territory but I would like any input you can give me. I'm doing a considerable amount of soul-searching at the moment as to whether to go ahead with the treatment or not. We are already lucky enough to have two wonderful boys and the treatment will be so expensive. I know, however, that if I don't even try this, I could potentially regret it for the rest of my life. Sorry to sound so melodramatic but any advice would be most welcome!

One last thing - can anyone recommend where I might get hold of (cheap) Etanercept, the drug I have been recommended to take?

Thanks for your time,

Lesley
 

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Hi Lesley,

Sorry to hear of your problems. I have also had similar symptoms just before my last miscarriage, and am being prescribed steroids and blood thinners for my next treatment (through Dr. Beer in the US). I have Raynauds and 2 genetic blood-clotting issues.

I don't have specific info. for you but you might like to ask this question on the immune issues thread.

http://www.fertilityfriends.co.uk/forum/index.php/board,52.0.html

There is a Yahoo immunology group which is very knowledgeable and may also be able to answer your question.

http://health.groups.yahoo.com/group/immunologysupport/messages

Wishing you good luck
Daisy
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Hi Lesley,

There are a few of us on FF in the same boat. I have a similar problem and also had immune type symptoms on my first 3 2ww's (dry fever, sore throat, glands etc).

Etanercept is also known as Enbrel and is common mentioned on the Immunology support group that Daisy has sent you the link for.

Most of us in the UK are taking another anti-TNF-a drug called Humira instead but there is someone on the immune thread here with Enbrel experience. See the postings by Aizkraukle2 (Niki) here :

http://www.fertilityfriends.co.uk/forum/index.php/topic,22295.from1107876453.html#new

I don't have a success story to share sadly and if you take a look at this poll here there is no good news. I do know of one woman who has had success with Humira though and it is early days for most of us.

http://www.fertilityfriends.co.uk/forum/index.php/topic,9273.0.html

I have other problems with my immune system and a neurological disease that was diagnosed before I tried to have a baby. The Humira I have tolerated very well and actually feel better on. There is info. on side-effects in the Yahoo group Immunology support's files section.

May I ask whose care you are under for these issues?

With warmest regards,
 

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Hi Lesley

I am currently taking Humira for raised TNFa levels. I've been on it a month now and my levels have gone down from 46 to 31 - at ARGC, a level under 30 is acceptable for treatment. I also have raised NK Cells and will be taking IVIG and steroids when I start treatment in a couple of weeks time. Humira is quite costly and I will need to take this until I get a BFP with a detected heartbeat - if I'm that lucky!

Humira is a drug which helps rheumatoid arthritis, there is a website www.humira.com which will tell you about it's use for rheumatoid arthritis, but not infertility. Try www.repro-med.net which will give you more information on immune issues for infertility. I think this article gives a good overview http://repro-med.net/tests/th1th2.php

I've never had any symptoms from my last negative cycle to make me think I have immune issues, it's only when I moved to ARGC and opted to have the immune blood tests done that my levels were shown to be high.

I don't think you can ever get any real answers as to whether immune treatment definitely works, but then again, no-one can say it definitely doesn't. I know of a couple of people who are pregnant as a result of immune treatment and I've met a lady at ARGC who told me she would never have had her 2 year old daughter if it wasn't for Humira.

Good luck with your treatment.

Take Care
Nikki
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Discussion Starter · #5 ·
Thanks ever so much for your replies.

My TNF level was 89.6 but the suggestion is that I start the etanercept as I start the cycle not as a precursor to it like you are doing with the Humira Nikki. There seems to be so many unanswered questions! I guess we'll try it out and see.

Lesley
 
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