Cyklokapron - is it safe for bleeding in an immune protocol pregnancy?

lissyloulou

3 Posts
Reply Posted on: Jul 1, 2013 at 5:56am
Advance apologies for length of post, I understand if it might take some time for you to find time to read and get back to me!Hi Dr Braverman,I am based in Australia and was due to have a Skype consult with you a few months ago after we emailed, but decided to try one last attempt using a Reproductive Immunologist based in Sydney (we speak by phone as i am based in Brisbane) who has trained at Dr Beers institute, alongside a new highly recommended open minded Fertility Specialist.Lo and behold we have our 1st ever pregnancy (after 4 years - 11 cycles - 3 x iui, 6 x stim, 2 x frozen)! So very happy to report we are 10 weeks today with a healthy heartbeat.However it has been fraught with many complications and I am very concerned about one particular drug that both docs cannot agree on. The drug is called Cyklokapron - active ingredient Tranexamic Acid 500mg. FS put me on 8 per day (spaced out) after 1st bleed and says it's safe and he does same for all girls who bleed (even his daughter!) as it helps ruptures/blood vessels to heal and spasms them or something, only targeting the rupture to prevent further blood loss while still being able to remain on high dose blood thinners (where if it gets severe the whole sack could get sucked out and I miscarry), but my RI says it should only be used 4-5 days max as it can cause issues for platelets around placenta and clotting. His management for bleeds is to lower clexane for few days, bed rest, then up dose again. He says most FS and OBs are not aware of the risks of this drug for immune patients (I am being handed over from FS to high risk OB from this week, but after meeting him he has little clue about immune issues too and will be led by my RI in Sydney for all immune stuff).Since positive test I have had severe cramping (was told from high dose progesterone & other drugs). First small bleed at 6 weeks 4 days, put on cyklokapron then and bed rest/intralipid. 2nd very heavy bleed at 8 weeks and clots literally falling out of me, rushed to hospital...same drugs, strict bed rest now told til 12 weeks. FS said I have rupture/burst blood vessel outside baby sack. Amazingly baby all good, very strong heartbeat. 3rd time rushed to hospital 8 weeks 6 days in agony but no bleeding. Twisted/torqued ovary, emergency surgery to remove - it was so black and twisted round tube they could not save it, lucky did not go septic. But so very happy for our baby to have survived (and me!). Out of hospital a few days later, no cramping/bleeding, all seemed finally well. Today rushed back to FS (one week & one day post surgery) for scan as past 2 mornings awoke with terrible cramping back and front, a bit of bleeding, little light pink spotting and dark tiny clots. Surgery was one week ago, so thought maybe from that. Surgeon said other ovary has cyst & swollen prob due to ivf also so need to watch that, perhaps causing pain, but not a real concern looks ok today. FS scan showed another burst blood vessel/rupture outside of placenta. But under advice of RI have weaned off the cyklokapron in past few days, and scared this is causing this fresh bleed and cramping. RI says bleeds are common in immune patients as body still trying to reject pregnancy so I need to just relax, manage clexane, and by no means take cyklokapron as it is a kind of clotting agent and risky. Is this true though? My FS says it only targets rupture and causes it to spasm and heal and prevent further bleeding. I was always happy to be led by FS for pregnancy/IVF related stuff and he is very good and I assumed he knew what he was doing, and then all immune stuff (Prednislone/clexane/intralipids/progesterone) by RI. But this conflict they are having over this one drug is very distressing. They are both good doctors and having your opinion would help greatly right now. Although I know there are no guarantees in life, I want our baby to have the best chance of survival.Sorry for length of post, but it might help you to know the protocol I am on and I would so value your opinion of this drug in question.My main issues are I have high nk cells in blood and uterus. Also homozygous C677T mthfr, as you will know is the most severe. Slightly elevated anti-dna antibodies.Protocol now :Prednislone - 35mgClexane - 60mgProgesterone - 4 x 400mg pessaries (upped from 3 after bleeds)Progynova - 2mg x 10 per day (upped from 8 after bleeds)Provera - 10mg x 10 per day (upped from 8 after bleeds)Intralipids - day 4 cycle, day of EPU, day after positive pregnancy, 6w4d after bleed, 8w1d after bleed, 9w1d after surgery (so 6 in 10 weeks! All urgently ordered by FS)Valium - 1/2 of 5mg tablet x 4 per day to calm uterus since 6w4d, upped to 5mg x 4 per day since major bleed at 8weeks.Feldene - 10mg - anti-inflammatory (told by FS to stop today)Melatonin - 5mg (for egg quality, usually stopped after positive result but had massive insomnia so better than sleeping pill I guess, now on Valium will try to wean)Cyklokapron - was on from 6w4d until about 9w4d. As soon as weaned this week the cramping & bleeding started again. FS would like me on it til 16 weeks (initially 12 weeks, but since further rupture today revised up).My FS wants me to stay on most of above until 12-14 weeks. I wonder though if the progynova/provera is exacerbating my cramping. Prednislone to start weaning from 12 - 16 weeks by RI. Clexane likely til only days before birth. Progesterone from 16 weeks very slowly, or potentially up to 32 weeks says the FS, have not discussed this yet with RI or OB. The OB's hate all the high dose hormones! And I have heard that progesterone beyond 16 weeks can be harmful to female babies?My stims were (all 1st time tried) - 600 menopur split dose daily, saizen growth hormone 3mg (as was starting to get egg quality/amh issues), 10,000 pregnyl for trigger, 1500 x 3 pregnyl boosters during week after transfer. Also had never been on the progynova/provera/feldene/high dose progesterone before.I need to do another nk cells test soon and wonder also if my body is fighting so hard maybe IVIG is called for. But we are pregnant so maybe best to stick with intralipids which seem to be working. I think the intralipid plan would be approx monthly now for awhile, all going well. It's really the cyklokapron that is my big question for you.So sorry for length of this.Thank you so much for your time.Kind regards,Alisa***Just got an update phonecall from RI...would you believe he has now changed his tune and has said he is happy for me to take cyklokapron again for 4-5 days if I have bleeds as long as I have breaks in between. So now my next question for you is when I take this medication (which I now think I can do as FS I trust immensely says til 16 weeks if I have issues with bleeding) - how long a break do I need to take? Can I take it for 5 days, then just 2 or 3 days off, then back on again for 5 days during this tentative period? So started it again tonight, and honestly a bit peeved with RI for putting me through all this.After taking cyklokapron a few hours ago I instantly feel better and safer (not sure if just psychologically helping!). But would like to know if safe to continue and how many days break I need to take between every 5 days on (if any break at all! At this stage I feel very frustrated with my RI for putting me through this stress with no supporting evidence although I pleaded for some kind of research to support his stance.)***Would you be able to point me in the direction of a reliable research paper regarding cyklokapron & immune or platelet/placenta effect issues if available? Rather than trying to google it and not sure if it is correct. Thank you.You deserve a medal if you have read to the end of this message! Apologies again and thankyou for all you do for families around the world!! You are a huge hero of mine.

Dr. Braverman

2026 Posts
RE: Cyklokapron - is it safe for bleeding in an immune protocol pregnancy? Posted on: Jul 1, 2013 at 11:18am
Im sorry I do not have any expereince with this medicaiton cyklokapron , I would be happy to assist you in your management as well. But at this point not sure there is much I can change as far as outcome since you are already 10 weeks preganant Just so you know i havent needed to add medicaiton when patients have bleeding on lovenox I simply stop the baby aspirin. Again I do not know your case in detail but if you need my help go ahead and fill out the consult form on my website and we can schedule a SKYPE consultation as this is not the forum for such a complex discussion.
Braverman Medical Team
Braverman Reproductive Immunology P.C.

lissyloulou

3 Posts
Reply RE: Cyklokapron - is it safe for bleeding in an immune protocol pregnancy? Posted on: Jul 1, 2013 at 1:11pm
Thankyou for your response. I was also going to suggest a Skype consultation, but it was helpful to get it all written out in front of me so I knew what I was dealing with and glad to know you think you can help manage this.
i am also on the baby aspirin, which I forgot to mention. Do you usually just stop the aspirin while the bleeding is occurring and then recommence?
I will discuss with my husband about the Skype consult and be in touch.
Thankyou very much for taking the time to read and reply, and apologies again for the complex post.
thanks, alisa

Dr. Braverman

2026 Posts
RE: Cyklokapron - is it safe for bleeding in an immune protocol pregnancy? Posted on: Jul 1, 2013 at 1:46pm
you are quite welcome, yes in my patients with bleeding I just stop the aspirin.
Braverman Medical Team
Braverman Reproductive Immunology P.C.

lissyloulou

3 Posts
Reply RE: Cyklokapron - is it safe for bleeding in an immune protocol pregnancy? Posted on: Jul 10, 2013 at 8:11pm
Just wanted to give a quick update, that my reproductive immunologist in Australia has approved me to take the cyklokapron 5 days on 3 days off. So for now we will continue with that and see how it goes as I am 11+3 today. Fertility specialist would like this to continue to 16 weeks, but we may stop sooner as long as there is not further significant bleeds. Thanks again.

Dr. Braverman

2026 Posts
RE: Cyklokapron - is it safe for bleeding in an immune protocol pregnancy? Posted on: Jul 10, 2013 at 9:28pm
please keep me informed on your progress I would like to follow this treatment with you.
Braverman Medical Team
Braverman Reproductive Immunology P.C.