I'm coming out of vacation hibernation to tell you that the testing from SIRM has turned up something. When I get home and have more time to read, process and figure out how to spell things, I'm sure I'll have more to say.
For now, I wanted to let you know that I have elevated natural killer cells and borderline high antiphospholipid cells. Both are treated with IVIG infusions and heparin, repectively.
I'd really appreciate it if you'd let me know if you're in the same boat.
Ok, back to being a beach bum. I miss you all and am looking forward to getting caught up when I get home.
Sorry, I don't know anything about either, but it's kind of nice to know what you can work on fixing at least!!
ReplyDeleteI don't know anything about either of those issues but i'm glad that you finally have some answers! Hopefully this will help you achieve a successful pregnancy!
ReplyDeleteEnjoy the beach :)
Oh, I'm so glad there are some answers and that those answers have treatment options.
ReplyDeleteHappy beach bumming!!
I'm seriously on the edge of my seat! Enjoy your vacay!
ReplyDeleteOh! That's something to work with! A problem and a treatment! How 'bout that. This may actually help you stay pregnant. Wooohooo!
ReplyDeleteI wish I knew more about what you describe, but I'm afraid I don't. Hopefully, others will have more input.
Enjoy your time at the beach, Kelly/
You've inspired me to ask my Dr about this again, (they kinda blew it off last time) as we seem to be in the same boat. I hate this boat - how 'bout you? shall we bail??? I want in the knocked up boat and I hope we can share it together soon!!! (sorry, tangent) Can't wait to hear what all you heard from the doc.
ReplyDeleteOh, such good news that they found something and it can be TREATED!!!
ReplyDeleteEnjoy your vacation!
Ohhh I went SIRM and was tested for this too -fortunately I was negative. I thought they were using IL treatments instead of IVIG?! I hope so - I believe it is way more affordable and easier.... here is a link to their website for more information! http://www.ivfauthority.com/search/label/IVIG
ReplyDeleteGlad you have some answers, that must feel great!
I have been tested for the antiphospholipid cells and was negative, but never been tested for NK cells. In your case, it sounds like something fishy is going on in there, so I am glad there is a treatable problem.
ReplyDeleteI know Kristi is treated for them, if you are on her blog...
http://www.blogger.com/profile/14537407923580887602
I have elevated NK cells and elevated TH1:TH2. It actually varies as to which one is elevated...
ReplyDeleteMy first IVF cycle we used two shots of Humira pre-cycle, and then once I got a BFP, did Intralipid infusions every 3 weeks. Ended in a miscarriage, but unrelated to the immune system stuff, just bad luck chromosonally.
Intralipid is used as a cheaper substitute for IVIG. It's an egg-based protein instead of a blood-based, so safer and less expensive. Some people respond better to IVIG, but luckily for me the Intralipid does the trick.
I'm mid-cycle on IVF #2, and we did one Intralipid at the very beginning of stims, I'll do another with the retrieval tomorrow, and then if I get a BFP, will do one every 3 weeks until 12 weeks.
I also did Heparin for IVF #1, due to MTHFR mutations = thrombophilia. I bruised really badly, so this cycle we're using Lovenox instead (once daily instead of twice daily).
I've posted a bit about the immunology stuff on my blog, and feel free to ping me with questions.
Several women on my PCOS buddy loss group have used heparin or Lovenox, and a few of them require IVIG or intralipids too. They also take prednisone as well. Both of the women using IVIG/intralipids have had successful pregnancies so far after many losses (the one woman had 4 losses and her baby is 4wks old now, the other women finally made it to 10wks- her furthest yet and things look excellent). So I have seen it in action, and I hope this is the answer for you! Hoping so much.
ReplyDeleteI'm so happy they found something that's wrong - I know this sounds crazy but I really hope they find something wrong with me too. All this is treatable. Yes, you'll have more shots and meds and stuff, but you can fix what's wrong!!! Looking forward to hearing about the protocol, and what you end up doing to fix this stuff.
ReplyDeleteHope you're having a fabulous vacation!!!
Answers are a good thing. I hope your feeling good and relaxed for your lovely vacation. I want pictures!
ReplyDeleteHooray for answers, especially TREATABLE ones! I am not in the same boat (at least, not yet), but I believe that Kristi from "Our Miracle in the Making" does. She is currently pg after a successful IVF -- about 1o weeks or so, and is doing both IVIG and monitoring her NK cells. Her blog address is http://lettheivfrollercoasterridebegin.blogspot.com/
ReplyDeleteHope that helps!
Hugs,
Jo
I'm so glad they found something and that it's treatable!!! Yay! Sorry I don't have any info to help. Have fun relaxing!!
ReplyDeleteHi, I have elevated NK, but you probably knew that already.
ReplyDeleteI am glad you found some answers. It just goes to show that the so-called thorough testing of normal REs (which seemingly does not include NK) is not thorough at all. APS however is a known and proven cause of RPL so if your doc didn't include that in the the standard RPL workup, that is very frustrating.
I am glad that you were able to get some answers!!! Have a wonderful time at the beach!
ReplyDeleteI'm so glad that you were able to find a reason and that there is something you can do about it.
ReplyDeleteFabulous! Knowledge is power and now you have POWER :) So happy your are going to SIRM and I look forward to you starting this "new chapter".
ReplyDeleteThings are going to turn around honey, just keep the faith :) Enjoy the beach!
I dont know how to word this...but I will just say in my eyes this is good news and def treatable:) As you know I have a whole slew of immune/clotting disorders and have been doing treatment for them...I started with Intralipid but it did not work for me so we had to get the big guns out and do IVIG and it lowered my NK's from 25 to 9....Amazing...they also monitor my cytokine levels too.....During my IVF cycle I was seen by and Reproductive Immuniologist and a Reproductive Immuniologist.....both worked together during my cycle....If you have specific questions/protocols please do not hesitate to ask:)
ReplyDeleteI hope you're having fun!
ReplyDeleteI was on Prednisone for the NK cells and Lovenox (which is similar to Heparin) for MTHFR (which is thought to cause clotting similar to APA's). Baby aspirin is also really important in this case (though I think you're on this?).
I see the staff at SIRM in Illinois and they were able to diagnose me with APA and MTHFR (both genes). This is great news they found this as many other clinics will not do this testing. Congrats on finding an answer. For both of these, I take lovenox daily. Hope this helps. If you have any other questions, you can email me at kezownorega@gmail.com
ReplyDeleteI have elevated NK cells and have been on intralipids each cycle. It is way cheaper than IVIg. During my IUI's I would get one infusion before insemination and then one once I received a positive pregnancy test. Though I never made it that far (chromosomal issues) I would have had one more three weeks later.
ReplyDeleteSo glad you were given some answers!! The not knowing can be the worst part!
I'm not really sure what those things are, but yea for them finding something they can fix!
ReplyDeleteI don't want this to sound wrong, but I felt a little yay, because they know the problem AND how to fix it...And the only advice I can give (because I don't have either of these, just the old MTHFR, PAT-1, & Factor V-Leiden) is that Lovenox is the way to go. Heparin hurts and leaves bigger bruises. Lovenox stings but the bruises are smaller..but Im a big bruiser and a wimp, so it might be easier for you..Im just glad you now have a "plan" and Im glad you got away and enjoyed vacation.
ReplyDeleteGreat that you have some answers. I'm on my 2WW for IVF #3, having changed clinics after the first two rounds. The new clinic gets very good results from diagnosing and treating immune issues. I did the full Chicago immune testing, and I have high NKs and something else, so during stimming I started on Clexane (heparin) once a day with dexamethasone, and I also had a dose of IVIg. Since transfer, I've been on Clexane twice a day, dexamethasone, baby aspirin and Ritadrine as well as PIO shots. Obviously, I don't know yet whether it's worked, but I feel as though I've given it the best possible shot this time round.
ReplyDeleteI haven't really had any problems with side effects - the IVIg was absolutely fine, though you do have to sit around for a few hours while they infuse it. Ritodrine gives me the shakes for about an hour after each dose, and I have a lot of bruises on my stomach from the Clexane jabs (possibly because of the Ritodrine shakes!).
If I get a BFP on Friday, the clinic will keep monitoring my immunes throughout the pregnancy - some people I know of have been on Clexane right up to birth, others have had IVIg three or four times during pregnancy, but many people are fine after a single treatment. Once we know what we're dealing with, it's good to know the treatment is tailored...
Good luck, and I hope this is the answer you need to get a successful result.
Kelly- I have elevated NK cells, my doctor's protocol for the next time I get a BFP is start intralipid therapy within a week of a postive beta. We're doing intralipid b/c the cost is so much more affordable. $600 for intralipid, $3500 for IVIG. Also I take extra folic acid b/c I am heterzygous for MTHFR and my OB wants me on lovenox and baby aspirin. Since all of my losses have been at the 8-10wk stage, we are not doing an intralipid treatment prior to conception. If we were doing IVF though I think we would. It's nice to have some answers and a plan.
ReplyDeleteThe natural killer cells can be treated with IVIG therapy, although it is really expensive ($2-3K) and takes about 4 hours to administer via IV.
ReplyDeleteI also have slightly raised APA levels, which is somewhat worrisome, but my biggest comfort there is that my mom also had raised APA and ANA and lupus levels and a retroflexed uterus, all of which I have, and she still had me. These aren't exactly good things, but they're not usually awful either.