High cytokines and humera...experiences?

[magda22]

So i have one good quality embryo from 3 years ago when I was 37, its frozen, 8cell grade 1 from day 3.

I am hoping to do a transfer in January, my clinic is very thorough and offered me a basic immune test. Since I only have one go at having a biological child I thought it would be good to try everything. My results have come back with high cytokines at 37, they would like 30 or below. This can affect implantation.

They suggest one or two courses of homera to bring the cytokines down before I go for transfer. I was really hoping not to hear this ☹ I haven't done research into homera yet, the clinic explained I would probably need 2 courses, each taking 5 weeks and costing quite a lot more money. I'm also questioning safety for my body and long term unknown effects.

I also dread making it string out and take more time, stress and energy. I was hoping to do transfer with minimal intervention - just get on with it and let nature do it's thing. It's estimated my embryo has a 30-40% chance of success, which obviously means a 60-70% chance of failure. It's so tortorous trying to do everything as well as you can.

Has anyone else done this treatment and have an opinion on it?

If my cytokines dont come down they would suggest intralipids. They would also continue to monitor me during a pregnancy and continue with intralipids. It all sounds like a bit of a nightmare, to be honest.

Any advice to share?

Love to you all xx

[Zebedee1971]

Hi, so I had 2 years of chemical pregnancies and ivf failures. Then in February I saw a miscarriage specialist. I took humira in February but only had one dose as I had a reaction to it- a blotchy rash all over my body and face, plus some ankle swelling. Luckily it lasts 9-12 months... In October I started taking intralipids, alongside hydroxychloroquine, and then (when I got an unexpected natural pregnancy presult) steroids. I'm currently 6 weeks pregnant and saw the heartbeat yesterday. This is the furthest I've ever gotten. I can't say if it was the humira or the steroids, or the intralipids, or all of them combined, or just pure luck with a good egg (fingers crossed) but I do know I've thrown everything I can at this little bean and it is - so far- paying off. The last thing I'd call it is a nightmare, if anything it's been a dream. And to top it off, it was a natural pregnancy so I didn't need to go back for the ivf round I was planning on doing. Still got £1000 worth of drugs sitting in my fridge I hope I never have to use. My advice - throw everything at this. The meds can only do good, they can't do any harm. (as a side note, my last ivf round left me with a liver issue that lasted weeks-- my alt was so high I was itching all over for 2 weeks before and after egg collection). Good luck making a decision x

[magda22 in reply to Zebedee1971]

Wow, thanks so much for this info, and gigantic congrats on your pregnancy!! 😍❤ So did you start taking sterioids before the pregnancy?

Do steroids/intralipids lower your immunity and are you having to be extra cautious re covid?

Will you continue taking them through pregnancy?

Again massive congrats and thanks, i hope it all proceeds beautifully for you xx

[Zebedee1971 in reply to magda22]

I started taking steroids when I got my positive result (would have taken on day of egg collection if doing ivf). Same for intralipids-- I actually took one during my last ivf cycle and I think it stayed in my system because i got natural pregnancy result the month after, which I haven't had since June 2018. The steroids do lower the immune system. Some clinics aren't prescribing but kine is, so I'm currently shielding. I'm a supply teacher so I've just booked off til Xmas. Only need them until 12 weeks. The intralipids are every 4 weeks up til 16 weeks. All I can say is, some (or all) of what I've been given has worked. I personally wouldn't transfer an embryo without the drugs if I knew implantation was an issue... Failed implantation is why I'm on all the drugs I am. I'm so thankful these drugs exist. I did initially worry about long term effects but I weighed that up against a future without children(or trying for them) and I took the risk. Might regret it in the future but I hope not 😂

[sazzle2680]

Hi Magda,

I took my first injection of Humira on Monday. Like you, my cytokines are pretty badly elevated, sadly so are my NK cells. I’ve had 4 x day 5 embryos transferred, all 4’s and 5’s of A and B quality (double donor) so had 70-80% likelihood of pregnancy with each transfer.

I was taking steroids and intralipids...all failed (one miscarriage at 5 + 3, all the rest BFN). Had my immune stuff checked and the consultant is confident it’s the cytokines stopping implantation and having caused the early miscarriage. The intralipid and steroids dont help the cytokine issue.

My advice would be to treat it...don’t take the chance with your little embie. The Humaria is stupidly expensive (as are the blood tests) but having to go through another round of IVF would be more so.

Good luck with making your decision.xx

[Holdingontohope36]

Hi Magda, I have just finished taking Humira after experiencing recurrent miscarriages that are thought to partly be down to NK cells. I am with a private IVF clinic who diagnosed high levels and then I went on to see a renowned recurrent miscarriage specialist in Epsom whose test is slightly different, but said my levels were even higher. Both clinics told me to take Humira, so I decided to do it. You take two injections two weeks apart, but something like 95% of people respond to the first course and don’t need the second course. My TNF alpha levels came down from 57 to 27 after just the two injections - factoring in the blood test two weeks after the second injection, it took me just four weeks in total. I had a few side effects, including dizziness and tingling in my hands and feet, but nothing major. And it cost me £250 for two injections with a private prescription, which is much less than it used to cost because Humira’s license ran out last year and now anyone can make the drug (adalimumab). I would do it, just so you don’t have any regrets. The nurses at my IVF clinic say they see astonishing results with it and people who have never fallen pregnant suddenly do, some of them without even having to do IVF. I’ve never had an implantation issue, but I believe this could be behind a lot of my problems. I’m now on hydroxy and will be on steroids once pregnant. Wishing you so much luck, whatever you choose to do. xx

[sazzle2680 in reply to Holdingontohope36]

Wow, it sounds like you and I are seeing the same consultant in Epsom

I didn’t manage to find Humira that cheap! Mine was £1k for the two! If I PM you would you mind telling me where you got your meds from? Just in case I need a second round?xx