Enbrel - natural killer cells

loose · Post by **loose** » Fri Jul 25, 2003 7:03 am

hello Samk Think i've got in a pickle on the reply system, so had to start a new thread. Thanks for your reply. I'm not sure predisnislone is the same thing as Enbrel. Do you mind me asking what you are taking it for? I'm having to take Enbrel because the clinic (ARGC) have done loads of blood tests (including some frighteningly expensive ones sent to Dr Beer in the states)and come up with 3 problems which are preventing implantation. One of these problems is this toxicidity produced by the natural killer cells. (A further effect of this toxcidity is rheumatoid arthritus in the future, so i suppose its a useful thing to know). So before we can even think of going ahead with ivf, we have to see if the toxcidity can be reduced by injecting Enbrol. Its reassuring to hear your comments on steriods - I'm sure its one of these things that when you just get on with it, its fine, its just the initial omigod! when you don't know anything about it. What stage are you at at the moment? Good luck loose

samk · Post by **samk** » Fri Jul 25, 2003 7:37 am

Hi Loose Thanks for your message. I am at the Lister who did three blood tests on us. I am a little concerned that they don't seem to have gone into it as much as ARGC - but I guess they know what they are doing. Apparently my percentage of ANKC is 13% which is only a little over the norm but after three failures ( well positive tests that fade away) we are convinced that someting must be up. I am waiting for my AF to start (think in about a week) and then am having FET - I don't think I could cope with a full go at the moment and I wonder whether we will deal with the whole thing better without all the paraphenalia - you know what I mean! Where are you based?

alison p · Post by **alison p** » Fri Jul 25, 2003 8:11 am

Dear Loose and Sam, I was at the Lister and they tested my natural killer cells - they were a normal level, but active. I started on prednisolone 25 mg a day from the day of EC. I am now nearly 15 weeks pregnant (that was my 4th ICSI cycle, but first time on steroids). I'm coming off them slowly now. Some people I talk to don't think that the steroids will have dome much, but obviously the doctor at the Lister thinks that there is a problem - who cares, it worked and I got what I wanted. Hope it workes for you as well, Good luck, Alison

loose · Post by **loose** » Tue Jul 29, 2003 6:35 pm

hello sam + Alison Thanks a lot for your messages - i'm sorry not to have replied earlier but this is the first chance that I've had to get online. I think that the Lister and ARGC are the only clinics to offer this testing - it all seems to be fairly new stuff. In a way, although its fairly depressing to find out that I have these problems, at least its slightly reassuring that there does seem to be a possible reason for my previous miscarriages. I also feel quite impressed with ARGC for going into it. If i'd returned to my old ivf clinic, they'd have just put me thro' another course of ivf which doesn't sound like it would have worked and taken their £4 grand, thank you. SamK - good luck waiting for your AF - hope it arrives when its meant to. I live in Richmond - whereabouts are you? Alison - congratulations on your 15 weeker! or probably more by now...whether or not the steroids helped, reading your message makes me feel more relaxed about taking them. As my doctor won't let me go ahead with ivf before they have worked with me, I can't believe they haven't made a difference. Good luck, loose

samk · Post by **samk** » Wed Jul 30, 2003 5:19 pm

Hi Loose and Alison As you may see from the Aug buddy thread DH's father died on Monday so we are abandoning IVF for the time being - probably pick it up again in October. Loose - really good luck for this time - Alison well done! ( by the wayI live in Putney so just up the road from you)

Amanda A · Post by **Amanda A** » Thu Jul 31, 2003 7:08 am

Hi Everyone, Can I please butt in? I am also at the ARGC and had a positive result at the end of June which has just ended in miscarriage. I had a D&C and they are sending some tissue off for testing (I think they may be sending it to the states) to try to work out if the problem is a chromosome one or something to do with implantation. I have also been told that I may have to have some blood tests once they get the results back. It sounds as though some of you may have already been down this path. Can you give me any info on what to expect? Many Thanks Rach.

Lissa · Post by **Lissa** » Thu Jul 31, 2003 11:04 am

Hi there I was tested at the Lister for nkc but told that I wouldn't get any results as they were taking the blood just for research. I have called them today to see what my results were. Sam so sorry to hear about your father in law - I lost my father a while ago and its a horrible time. Hope you are all doing okay. I am also leaving my ivf until October, I will keep an eye out for your return. How long have you guys been at the Lister? Do you think they are doing a good job? Alison - congratulations! Lissa

loose · Post by **loose** » Fri Aug 01, 2003 4:55 pm

hello all I seem to be lousy at picking up on threads as its at least 2 days since Sam's message. Sam, I'm so sorry to hear about dh's dad.My dad died a couple of years ago and it can completely knock you flat. Good idea to hang on until life settles down a bit. Judging how slowly things are moving with me, I'll probably be there with you in October. Very nice to hear you live in Putney - makes me feel a tad less isolated. Rachael, I'm very sad to hear about your mc. I'm interested to hear you are at ARGC, what do you think of them? I've only been there since about June, but am so far fairly impressed. They've done a lot more than my other ivf clinic. Re what to expect - all i can tell is you what they have done with me, which was take about 19 blood tests, three or so of which they sent off to Dr Beer in the states. The American b/tests cost about £1,000 which was a bit spine chilling. They also sent paraffin slides of my 3rd mc off to Dr Beer. I haven't heard the results on these yet. I also had a hysteroscopy and endometrial bioposy, the latter was also sent off to Dr Beer. The American tests have been pretty expensive, but the results have shown that they were worth doing. I hope this has helped a bit - i always find I become instantly inarticulate whenever I answer anything on this site. Let me know if you want any more info. Good luck Loose

Vicky · Post by **Vicky** » Thu Aug 07, 2003 7:13 am

Loose I too have problems with m/c & failed implantation so had the Chicago tests done and have I guess like you elevated NK's in the TH1-TH2 testing, have been told by Dr Beer I will need Enbrel or Remicade. He has said I can start the Enbrel now, injecting every 48 hours. A little confused by his post to me and want to find our more before I e-mail him back and just wondering if you could tell me how you proceeded with the Enbrel course, how often you injected or is it an infusion? Surely he doesn't mean I need to take Enbrel every 48hrs for the next 6 weeks which is when I will hopefully begin a new IVF cycle. Did you also consider taking Remicade? Have you had the endometrial biopsy done also. How far into the Enbrel course are you, have you had you levels tested yet? I hope all is going well for you if you have. Look forward to hearing from you and any others who have gone through similar treatments. Vicky

Natalie100 · Post by **Natalie100** » Thu Aug 07, 2003 8:20 am

Sorry to barge in here but if you are after more info on girls already having this treatment then you should take a look at ivfconnections, once on there go to IVF, then immune problems. There are several threads going at the moment by girls who are being treated by Dr Beer in the UK. I take it that the enbrel has to be taken at least 4 weeks before IVF/ICSI then your levels re-tested to make sure its working. I think they paid around £800 for the Enbrel for a months supply and the Remicade treatment/IVig is around £1100 per go and some of them need up to 3 of them. Good luck Natsx

loose · Post by **loose** » Fri Aug 15, 2003 1:02 pm

hello Vicky i'm sorry i haven't replied any sooner, i've been in non-internet country (norfolk!). I'm not taking Enbrel yet and don't think i will be as its been recommended that i take humira instead. So i'm even more confused now as I know nothing about that. Are you the Vicky on the IVF connections website which nat recommended? If not there is a thread running for people taking enbrel which is really interesting. Nat Thanks for the ivf connections website suggestion, which is really interesting.There is a humira thread on it and I've just posted a question. Thanks very much. Hope all is going well with you both. cheers loose

jen · Post by **jen** » Sun Aug 17, 2003 6:26 pm

Hi Loose Just want to say thanks for introducing this thread - it's really interesting. I'm at the ARGC too, just had a -ive ICSI. Have had 3 IUI's, 1 IVF and 3 ICSI's at another clinic. Just wish we had gone to the ARGC sooner. We got a very very low +ive this time but the 2nd blood test was -ive. We had our follow up consultation yesterday and they want us to go ahead with the blood tests that need to be sent to the USA. Even though we were gutted to get another negative, we are happy with the ARGC as they seem to look into things in a lot more detail, our other clinic would just have done nothing different and said try again. I'll probably have the tests done in the next few weeks. Have you any idea of the time scale involved with having the blood tests to starting the next treatment? What stage are you at? Best of luck with everything - might bump into you someday, you too Rach. Love Jen xx

Amanda A · Post by **Amanda A** » Mon Aug 18, 2003 1:59 pm

Hi Loose, Jen, Nat & everyone else on this thread! It would be really good to keep this one going as it is quite specific. Loose, yes I am impressed with the ARGC. I have had one failed ICSI there in Feb and then the positive that ended in MC in June. The good thing about them is that they seem to learn from your last attempt and change things accordingly. I am also very impressed at how many times Mr Taranissi has been on the TV recently!! Jen, hope to see you there at some point. Our next consultation to get the results after my mc is in Sept, so looks like I may be about Autumn/Winter time. Nat, thanks for the info re IVF connections, I am now off to have a look. Take Care, Love RachXX

Natalie100 · Post by **Natalie100** » Mon Aug 18, 2003 2:29 pm

Loose, Rach & everyone else Im glad you found the IVF connections thread helpful. I have gained alot of knowledge from the girls there are always help where they can, especially RoseBuddy. If ever you are stuck just post a message for her and she will help. Thankfully for me I got all my results back last week and am clear. i didnt go through DrBeer because of the financial side and all the tests he suggested. Instead I called my local Haemotology dept and asked if they tested NK cells and was shocked when they said yes. All I done was get my clinic to fill in a form and had the test done here local to me and the results sent to the IVF clinic. Im so glad that they were clear just because there is no way on earth we could have afforded to take Enbrel and have IVIg aswll as paying for ICSI. I wish each and everyone of you all the success. I wil of course continue to be nosey and see how you all are!!! Love Natsxx

Amanda A · Post by **Amanda A** » Wed Aug 20, 2003 5:57 pm

Nat, Am I right in thinking that your local hospital is Colchester? I am just thinking that if my clinic suggest that I have these blood tests, maybe I could go there too as I live in Ipswich. Not sure how it all works maybe they would say that I would have to try Ipswich hospital? Don't suppose you have any idea? Off on holiday for 2 weeks, so apologies if you reply to this and I then don't get back to you straight away! Take Care, Rach.

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