Liz,
<br/>
<br/>Thank you for the information. I think that is a good idea.. I will
<br/>ask my RE about it when it is closer to ttc.. I am in semi bench
<br/>right now since I may need to take INH :(
<br/>
<br/>My RE never mentioned anything about fibroids etc.. he did look for
<br/>endometriosis through u/s and he said he did not find any. I know it
<br/>is not the definite proof to rule out endo but just a little bit
<br/>piece of mind.
<br/>
<br/>Once again thanks.. and let us know what DB thinks..
<br/>
<br/>Regards,
<br/>
<br/>San
<br/>
<br/>--- In immunologysupport@yahoogroups.com, "Liz Lombardi"
<br/>wrote:
<br/>>
<br/>> Hi San,
<br/>> I think most u/s can detect and measure most all fibroids. I know
<br/>you get a much better view through hysteroscopy, though. I am glad I
<br/>did that. It was painless and not invasive at all.
<br/>> I, being "unexplained" (I hate that word) have always wondered
<br/>about the endo too. I do not have irregular periods at all and they
<br/>are light with no cramping, so I never thought to look into it, but
<br/>the myomectomy or laparoscopy I am thinking about having could
<br/>hopefully answer all these questions and remove whatever is in the
<br/>way.
<br/>>
<br/>> I agree that you shouldn't have the invasive surgery if you can
<br/>avoid it. In my case, I have always avoided it, but at 39, with 5
<br/>(possibly6) failures. (3 m/c's and 2 bfn), I have to start thinking
<br/>about it differently.
<br/>>
<br/>> Take care
<br/>> :)Liz
<br/>> ----- Original Message -----
<br/>> From: Mend0ta
<br/>> To: immunologysupport@yahoogroups.com
<br/>> Sent: Sunday, April 02, 2006 8:06 PM
<br/>> Subject: [immunologysupport] Re: Liz & Zoe-- NKU result and Beta
<br/>3 Integrin
<br/>>
<br/>>
<br/>> Hi Liz,
<br/>>
<br/>> Thanks for replying..
<br/>> I actually am not diagnosed with fibroids .. is it visible
<br/>through
<br/>> u/s or only through hysteroscopy?
<br/>> I am debating about endo too.. I don't have any symptoms but I
<br/>heard
<br/>> that one can have endo without any symptoms..
<br/>>
<br/>> If they were just blood check I would do it in a heartbeat but if
<br/>> they have to mess around with my reproductive system there is
<br/>always
<br/>> chance of making it worse right with scarring.. so I am torn :)
<br/>>
<br/>> Btw.. for Zoe -- my RE repeated CCA125 and it was normal ..so he
<br/>> thinks I don't have endo. It is good but I am not convinced :(
<br/>>
<br/>> Regards,
<br/>>
<br/>> San
<br/>> --- In immunologysupport@yahoogroups.com, "Liz Lombardi"
<br/>> wrote:
<br/>> >
<br/>> > Hi San,
<br/>> > I had a hysteroscopy about 9 months ago. I have always had
<br/>> fibroids and I wanted to see if they were "in the way". An RE did
<br/>> the procedure and in her opinion the fibroids were not a problem.
<br/>2
<br/>> other RE's (yes, I have consulted with 3 - how sad LOL!) agreed
<br/>that
<br/>> the fibroids look fine on u/s. In other words they are either
<br/>> outside the uterus or within the wall. But, I must say that with
<br/>all
<br/>> my m/c's and implantation failures, I think I will probably look
<br/>> into having a myomectomy done (by a really good surgeon) to
<br/>remove
<br/>> them all. A couple of them are lime size and one is lemon size.
<br/>I
<br/>> think that is way too big. The way I look at it, having the
<br/>surgery
<br/>> cannot hurt my chances of getting pregnant. I already have very
<br/>low
<br/>> chance, so maybe this could actually help. My ob/gyn has always
<br/>> thought I should get them removed, but I never listened to him
<br/>> always to my RE's.
<br/>> >
<br/>> > I don't know if my high levels of NKu's have been because I
<br/>have
<br/>> fibroids, but I know there has been discussion recently on this.
<br/>If
<br/>> removing them could help, I would do it in a heartbeat. I might e-
<br/>> mail DB about this later this week.
<br/>> >
<br/>> > Warm regards,
<br/>> > :)Liz
<br/>> > ----- Original Message -----
<br/>> > From: Mend0ta
<br/>> > To: immunologysupport@yahoogroups.com
<br/>> > Sent: Saturday, April 01, 2006 11:15 PM
<br/>> > Subject: [immunologysupport] Liz -- NKU result and Beta 3
<br/>> Integrin
<br/>> >
<br/>> >
<br/>> > Hi Liz..
<br/>> > thanks for the detail explanation.. I think when I can take
<br/>> Humira
<br/>> > that's what I'll do...biopsy to make sure everything is gone
<br/>> before
<br/>> > I take 3 months lupron for the integrin.
<br/>> >
<br/>> > Btw..do you ever have hysteroscopy done to check if you have
<br/>> polyps
<br/>> > or anything due to NKU?
<br/>> >
<br/>> > Regards,
<br/>> >
<br/>> > San
<br/>> >
<br/>> > --- In immunologysupport@yahoogroups.com, "Liz Lombardi"
<br/>> > wrote:
<br/>> > >
<br/>> > > Thank you San
<br/>> > > What I did was biopsy first and to DB's surprise (because
<br/>my
<br/>> > cytokines were low), found the NKu's. PSL lab sent me the
<br/>> results
<br/>> > and the picture stained to reveal all the NKU's. We saw 22 at
<br/>> least.
<br/>> > I started 50mg Enbrel and did another biopsy after 4 weeks.
<br/>The
<br/>> > NKu's went down to about 10 or 12 and DB increased my dosage
<br/>to
<br/>> > 75mg/ week. I did another biopsy after 4 more weeks and the
<br/>> stain
<br/>> > revealed just 1. Anything under 4 is good. I have continued
<br/>the
<br/>> > Enbrel throughout my IVF cycle. DB said no need to biopsy
<br/>again.
<br/>> > > Best regards
<br/>> > > :)Liz
<br/>> > > ----- Original Message -----
<br/>> > > From: Mend0ta
<br/>> > > To: immunologysupport@yahoogroups.com
<br/>> > > Sent: Thursday, March 30, 2006 7:08 PM
<br/>> > > Subject: [immunologysupport] Re: JANE and Others -- NKU
<br/>> result
<br/>> > and Beta 3 Integrin
<br/>> > >
<br/>> > >
<br/>> > > Hi Liz,
<br/>> > > Thank you so much for responding to my despair..
<br/>> > > So did the NKU really go away after Enbrel?
<br/>> > > Did you test every 4 weeks too or did you test after 2.5
<br/>> months?
<br/>> > > Did you test before and after stimming?
<br/>> > >
<br/>> > > INH is a drug to treat latent TB.. and it can cause liver
<br/>> > damage.. I
<br/>> > > just looked it up .. goodie :(
<br/>> > >
<br/>> > > Thanks again for your response...
<br/>> > >
<br/>> > > I wish you all the best for your cycle..
<br/>> > >
<br/>> > > Regards,
<br/>> > >
<br/>> > > San
<br/>> > >
<br/>> > > --- In immunologysupport@yahoogroups.com, "Liz Lombardi"
<br/>> > > wrote:
<br/>> > > >
<br/>> > > > San,
<br/>> > > > I had 22 NKu's after my biopsy. I chose to take Enbrel.
<br/>I
<br/>> was
<br/>> > on it
<br/>> > > for 2.5 months until the NKu's finally went away. I would
<br/>do
<br/>> a
<br/>> > biopsy
<br/>> > > every 4 weeks.
<br/>> > > > I do not know too much about the beta 3 integrin and
<br/>> needing
<br/>> > > Lupron, but I just did IVF with serious stims after
<br/>Lupron
<br/>> and
<br/>> > never
<br/>> > > flared, so it is not always certain that you will flare
<br/>with
<br/>> a
<br/>> > > stimulated cycle. I know the Lupron would be for a much
<br/>> longer
<br/>> > time
<br/>> > > and if it helps your uterus, I would do it if the Dr's
<br/>> agree. I
<br/>> > hate
<br/>> > > to see that you have to endure 9months of INH to rule out
<br/>> TB. I
<br/>> > don't
<br/>> > > know what INH is please excuse me, but I guess it is much
<br/>> better
<br/>> > to
<br/>> > > be safe than sorry.
<br/>> > > > I hope you get more answers and I am wishing you great
<br/>> hope to
<br/>> > > reach a success!!
<br/>> > > > Best to you!!
<br/>> > > > :)Liz
<br/>> > > > ----- Original Message -----
<br/>> > > > From: Mend0ta
<br/>> > > > To: immunologysupport@yahoogroups.com
<br/>> > > > Sent: Wednesday, March 29, 2006 9:12 PM
<br/>> > > > Subject: [immunologysupport] JANE and Others -- NKU
<br/>> result
<br/>> > and
<br/>> > > Beta 3 Integrin
<br/>> > > >
<br/>> > > >
<br/>> > > > Jane & Others,
<br/>> > > >
<br/>> > > > DB office called me yesterday with NKU result.. and I
<br/>> have
<br/>> > 12 !!!
<br/>> > > > Does anyone ever have it that high? I will have a
<br/>> consult
<br/>> > with DB
<br/>> > > on
<br/>> > > > April 12 to go over this result but I think it is
<br/>going
<br/>> to
<br/>> > be
<br/>> > > Humira
<br/>> > > > from what I read here.
<br/>> > > > Do you have an approximation how long I should be on
<br/>> Humira?
<br/>> > > >
<br/>> > > > I went to see my rheumy today to consult if I can
<br/>take
<br/>> > Humira.
<br/>> > > > He does not want me to take it before I go on 9
<br/>months
<br/>> of
<br/>> > INH.
<br/>> > > > He is afraid that I have latent TB because I grew up
<br/>in
<br/>> 3rd
<br/>> > world
<br/>> > > > country and my CT scan shows some scarring.
<br/>> > > >
<br/>> > > > He said that the mortality rate is 50% for TB and he
<br/>had
<br/>> a
<br/>> > > patient in
<br/>> > > > his clinic that died 3 months ago due to TB and
<br/>Humira..
<br/>> > what a
<br/>> > > way
<br/>> > > > to convince me of INH.
<br/>> > > >
<br/>> > > > I am being tested for Inferon(? spelling) but he said
<br/>> that
<br/>> > > regardless
<br/>> > > > of what the result is he still wants me on INH but he
<br/>> will
<br/>> > > consult
<br/>> > > > with his colleague from infectious disease to discuss
<br/>> how
<br/>> > long I
<br/>> > > > should be on INH.
<br/>> > > >
<br/>> > > > Next -- I also have result from my Beta 3 Integrin
<br/>> biopsy. I
<br/>> > had
<br/>> > > it
<br/>> > > > done the same day when the RE collected sample for
<br/>NKU.
<br/>> > > > Beta 3 integrin is a new test but it is essentially
<br/>the
<br/>> glue
<br/>> > that
<br/>> > > > cause the embies to stick. So for those of you who
<br/>have
<br/>> > never get
<br/>> > > > successful implantation I suggest to test for this.I
<br/>> think
<br/>> > there
<br/>> > > is
<br/>> > > > only one clinic that tests this.. called Adeza.. it
<br/>> costs
<br/>> > $425.
<br/>> > > >
<br/>> > > > It turns out that I don't have the integrin either.
<br/>This
<br/>> is
<br/>> > > though
<br/>> > > > can be treated by using Lupron for 3 months.. and
<br/>they
<br/>> have
<br/>> > high
<br/>> > > > success from it although the number of observation is
<br/>> still
<br/>> > small.
<br/>> > > >
<br/>> > > > Unfortunately they don't know how long the integrin
<br/>> stays ..
<br/>> > > study
<br/>> > > > shows that if you do IVF right away after the end of
<br/>3
<br/>> > months
<br/>> > > Lupron,
<br/>> > > > the chance is about 80% pg but if you do it 2 months
<br/>> after
<br/>> > end of
<br/>> > > > Lupron then the chance is only 47%.
<br/>> > > >
<br/>> > > > So now I am confused on what to do because that means
<br/>> using
<br/>> > > Lupron
<br/>> > > > for 3 months and then stimming.. would not that cause
<br/>> super
<br/>> > high
<br/>> > > > chance of flaring? While immune patient is said to be
<br/>> better
<br/>> > off
<br/>> > > with
<br/>> > > > FET due to low stims?
<br/>> > > >
<br/>> > > > I guess this would be the order for me now..
<br/>> > > > INH for 9 months
<br/>> > > > Humira until NKU gone.. how long after Humira do you
<br/>> retest
<br/>> > > biopsy?
<br/>> > > > Start Lupron for 3 months
<br/>> > > > Stimming?
<br/>> > > >
<br/>> > > > I am so afraid of flare though because I think I have
<br/>> high
<br/>> > chance
<br/>> > > of
<br/>> > > > it being category 1-5.
<br/>> > > >
<br/>> > > > Please advise...
<br/>> > > >
<br/>> > > > Thanks for your help.
<br/>> > > >
<br/>> > > > Regards,
<br/>> > > >
<br/>> > > > San
<br/>> > > >
<br/>
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