Hi,I've just got the results back from my EMMA/ERA tests and blood tests and - as well as adonomyosis, which I'm on down regulation for - I've been told I need to take Clexane, aspirin and Prodisorone.
At this point, after so much failure and loss, the thought of even more medication makes me just want to give up. It's been 5 failures at this point, including a miscarriage and a chemical pregnancy, and it just seems like an insurmountable obstacle that I cannot face. I'm so exhausted of being on medication and am currently battling the peri-menopausal symptoms that come with the adnomyosis treatment; I've gone through 3 full rounds of stimulation with my own eggs and 2 rounds with a donor FET and I am just... broken.
Those who have been on the Clexane/Prodisorone protocol: is it all as wearing and unpleasant as it is in my head? Are the daily injections do-able? And how - after everything - do I pick myself up yet again to face even more medication and needles and potential failure?
Any advice or experiences would be so welcome xx
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Wellington22
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I'm sorry to hear about your journey so far. I know exactly where you're coming from so fingers crossed my story will give you a bit of hope.
I had 5 failed transfers with various tests in between (and one chemical) but before our 6th transfer I had the immune blood panel test done and it showed I had high natural killer cells and so I needed prednisolone to lower my immune system.
This time round I was on: 5 x oestogen tablets, 1 x lubion injection, 2 x cyclogest pessaries, 1 x inhixa (clexane) injection, 4 x prednisolone tablets (plus vitamin E and folic acid). But amazingly it worked. Our 10th little embryo actually stuck and he's now 2.5 years old.
I know it's so hard to pick yourself up again and again, but I always found that when there was something new to try there was a new hope. I've seen a lot of people have success after using steroids so fingers crossed this is the one for you.
It can feel like a lot, but my advice is to just think of it day by day - don't look at it as soooo many injections / tablets - just tick off each day and then on to the next.
Brilliant advice from Millbanks here. Couldn’t put it better myself. One step at a time and honestly those meds and injections are completely doable - you’ve already faced worse so far. I heard a good quote today - sometimes courage is simply about going one more step than you thought you could. However I’d also say if after the peak of pain from this last round passed and you really feel you are done, there is no shame in saying you’re ready to stop either. ❤️
Thank you Millbanks - this is great advice. I'm just feeling so infuriated by it all and there seems to be no light at the end of the tunnel. All I seem to do is to take medication after medication and yet none of it works - maybe this time it will. It feels like another mountain to climb at the moment.I really appreciate your advice and will certainly take inspiration from your success xxx
Please don’t give up. I had 5 transfers - first three were only on clexane, estrofem and cyclogest, the forth transfer we have added 5 mg of prednisolene and intralipids injections. The transfer was successful however I have miscarried at 6 weeks. The fifth and successful transfer was with 25mg of prednisolene until the third month. It’s not very pleasant medication but it was all worth it. He is 3 months now.
I can completely sympathise, it’s so hard not understanding why it’s not working and often the doctors seem just as stumped! I’m currently on my 8th round, now trying a similar protocol to what you mentioned, clexane, prednisolone and also low dose aspirin. I did have clexane last cycle and got pregnant but miscarried a euploid baby so they’ve added the extra drugs in case that helps. I’ve noticed this cycle I’m waaaay more bruised, I think it’s the combination of all the blood thinners. Feel like I’m running out of space to inject 😂 but apart from that, I don’t notice any difference or extra symptoms. I don’t know if it’s helpful for you but I’m approaching it as just going through the motions, after so many cycles it’s kind of just routine now. I don’t know that I’ve been able to pick myself up, still feel pretty negative about it all but for now the thought of doing nothing is worse.
Thanks so much for your reply and so sorry to hear about your miscarriage. It's so incredibly sad. You are right about doing nothing feeling worse - the only thing stopping me from giving up is the thought of giving up.Really hoping this round works for you xxx
hello, I was on all of the above for 3 rounds honestly you get soo used to it it’s just second nature. I would absolutely advise typing up a meds sheet and ticking it off once you do them so your on track with everything but they were no problem for me at all. When I went up to the high dose of prednisone I had a few weird dreams. But other than that and being hungry it was fine.
The clexane injections did bruise my stomach so keep an eye on how you space them out xxx happy to help if I can xxx
Thank you for the advice - it is much appreciated. I think I've just been ruined by the three stimulation rounds, as it was pretty awful. We're doing DE now and the thought of even more awful side effects from yet more meds fills me with dread. The med sheet is a great idea - I'm starting to forget things, I'm on so much stuff already so that would keep it organised xx
Me! This is exactly the protocol I did 6th and 7th transfers. And I’m now sat cradling my 1 week old daughter and still trying to wrap my head around the fact it worked let alone the fact she’s now here! 💖
I didn’t do the tests but the clinic put me on the protocol (Bondi) after 5 failed transfers of 6 DE embryos. Unexplained RIF.
I didn’t find it at all an issue. The pred is just a tablet, although it did increase my appetite. And the clexane was just a part of my bedtime routine. Yes sometimes it stings, but only for a few seconds, and the pre-filled pens are so easy to use.
I did modified transfer along with this for my 7th transfer and it’s the one that worked.
Come on girl you got this! 💪🏻 it can and does work, and IT WILL. Dig deep and keep going. Find that inner IVF warrior strength once more!
sorry to hear about your loss and failures. I’m in the same boat, lots of failures and a twin pregnancy loss at 17 weeks. Have tried 2 more FETS since then that have failed and just in my 2ww of a 3AA embryo.
Currently taking clexane and lubion injections, plus predisolone and aspirin. Predisolone are tablets, so far I have no side effects, I am taking 20mg daily.
Clexane and lubion are in the stomach. Do you have anyone close that can help with the injections ? Clexane can help with implantation as it’s a blood thinner. My successful cycle included clexane (the pregnancy didn’t work out but that was due to the embryos / chromosome issues)
They aren’t too bad and you get used to them but totally understand how you feel, so much medication and effort without success is very disappointing and just makes you want to give up. I’ve been there.
Is your progesterone tested before ET and is that always a good level? Did they say why you needed to take clexane and predisolone?
Really hope the next cycle is successful for you xx
Hi Amywoz84 ,I am so sorry to hear of your loss and of your journey so far and thank you for replying.
I'm ok with giving the injections but I've just heard so much about the side effects etc. I think at this point I'm just feeling that pain and resentment of having to go through all of this when other people just get pregnant naturally - I know it is natural to feel like that at times but it's really got to me this time round.
My progesterone is always fine before transfers - I've got adenomyosis and have just found out about my elevated NKCs and an abnormality on my clotting protein, so that's why I'm being treated with the Bondi protocol.
Really hoping it's just like a marathon runner breaking through 'the wall' and that I'll push through what feels like a tricky bit and be more positive on the other side.
I am so sorry to hear your journey has been so rough. Just know we have all felt the same at some point, Steroids and blood thinners have always been part of my protocol. The steroid best to take in the morning on an empty stomach. It did give me a bit of insomnia. (Used it for 13 weeks) as you need to wean off) I did my clexane shots at night. Thicker needle so it does sting and bruise and it was my least favourite.
I just planned my day around my medication for the first 12 weeks. (From transfer to my first scan) and then weaned off. I was more terrified of coming of the meds so my doctor let me wean off slowly. (I am due on Monday)
Make the meds a pleasant experience. We did it after dinner so I had a chance to shower light a candle, feet up and read a magazine afterwards etc. it’s a bloody process and it’s time consuming but if you get a little baby at the end of it then it’s worth doing. Best of luck
Thank you for your reply. You are right and making the meds as positive a thing as possible is definitely the solution to getting through it.Really hope all goes well with your little one - it's so encouraging to hear about a happy ending to all this xx
Oh, I can totally understand but please don’t give up. The way I try to think about it is that everything you do, every pill or injection, gets you closer and closer to having a baby. I’ve done 7 egg collections and 2 embryo transfers over the last 4 years. In addition to usual stimulating injections I’ve been on Clexane for two weeks after every egg collection plus after every transfer and throughout the whole pregnancy (got a little boy from the second embryo transfer). I didn’t do Prednisolone but had IVIG as part of the immune protocol. Oh, and I had to do Prontogest for progesterone as pessaries didn’t work for me - this meant daily painful injections with a giant needle to my bottom for three months 🙈 I did find it quite demoralising for some time but then it became a usual routine and I was so used to it that I didn’t bother me much. It was just something I had to do and I knew it will end eventually. For Clexane I switched from injecting into stomach to thigh instead, which helped a lot as I found it less painful and easier to do.
Thank you for replying - I must admit, I'd much rather do thigh injections so good to know that is an option!
Thanks for sharing your journey too - sometimes I just find that there seems to be no light at the end of the tunnel and that's not helpful. It's lovely to know it can all end happily xx
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