IVF and steriods: Hi, Is anyone taking... - Fertility Network UK

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IVF and steriods

besgstan profile image
12 Replies

Hi, Is anyone taking steriods at an NHS clinic as a way of counteracting implantation failure?

After 3 failed transfers we are at a loss of what to try next. The clinic we are at isn’t great and I can hand on heart say that judgement is not based on negative outcomes. The very first day I picked up my meds a nurse had what can only be described as a tantrum when I handed in a sheet stating first scan was on a bank holiday. Since then they have given me the wrong progesterone twice, before I noticed and corrected them. When I over stimmed despite phone calls they never got back to us resulting in the main clinic carrying out the collection in difficult circumstances- pain and it took an hour. I have totally lost my trust in them and feel any enquiries into next steps are met with ‘well you haven’t had many failed transfers yet’. Do I really have to get into double figures before people look deeper into what’s going on?

Additionally when we asked questions yesterday about steriods, immune system (I have endometriosis) it came to light that a year ago when I first started the process they didn’t do a thyroid test and some other basic bloods.

I feel very let down. How do they miss something so basic? I asked about steroids and quad therapy to be told no they don’t recommend steriods. So what I am getting at is in light of all the above, where are other ladies at with their NHS clinic? Is avoidance of steriods usual or is my clinic an anaomoly.

Sorry for the long post but they are very evasive with reasons and a lot of what they will and will not offer seems to be based on their personal taste. Xx

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E_05 profile image
E_05

Sorry you don’t seem to be having much luck with your clinic. My treatment is with the NHS and last year I asked my consultant about NK cells, he doesn’t agree with the testing but understood my reasons for wanting to try steroids and agreed to put me on prednisolone. My last cycle was the furthest we got into a pregnancy although it ended in mmc still, I am however in the tww from a natural cycle but still took prednisolone xx

besgstan profile image
besgstan in reply to E_05

Thanks so much for your reply. Our clinic is also pretty against NK killer testing. TBF looking at how much it costs to do privately and the fact that many clinics give steriods without testing, we are off he opinion that if the positives outweigh the negatives let’s try it. But they seem set against using them. That being said four months ago they were ok about endometrial scratches, and I had one, and now upon the release of a research paper are refusing to offer them. I just feel like I am at the whim of what is on trend with them xx good look with your current tww hope the outcome is a positive one for you xx

E_05 profile image
E_05 in reply to besgstan

Could you not ask to speak to another consultant? That was exactly my view for this transfer if it’s not going to do any harm for me it seemed worth trying. Thank you, I hope you get some answers soon xx

besgstan profile image
besgstan in reply to E_05

Unfortunately the clinic we are at is a satellite clinic with only one consultant. They just deal with the medication, blood tests and follicle scans. The collection and transfer is done at a bit unit about 40 mins away. We asked to be transferred solely to the bigger unit but they felt that transferring me out of area may cause problems with my entirlement. We get two rounds you see and the big unit is in a ccg area that only gets one. I thought my ccg entitlement would be portable with me as a patient. I never know what’s truth and what’s just being fobbed off to be honest 😪 I am just willing to try anything sensible and safe.

AnnieAnnie profile image
AnnieAnnie

I am currently under nhs treatment but mine is done via a private clinic who have been amazing. After my last failed cycle I asked my consultant about nk cells test, he said that it wasn't reliable enough as everyone's nk cells can change month to month, I then questioned him and said "so you wouldn't go to Coventry?" He said that's totally different. The utrine natural killer cell test takes a biopsy and 2 are done and from the research so far, if implantation failure is an issue, he said that the test was a good one to have. My consultant is open minded and knows first hand the struggles with ivf. I've had my first biopsy and now await ovulation for the next one.

I had one failed cycle and asked my consultant about implantation failure, he recommended I have the c4m2 blood test for clotting issues, it came back positive. I was asked by several people why i was having the test done if ive only had one failed cycle. My response is, ive never in my life had a positve pregnancy result, my first ivf, i had a top grade blastocyst, if it was going to work, it would have done. After which it got the positive for the c4m2. I would rather pay out a few hundred pounds for a test than go through another failed ivf.

Good luck in your decision in what to do xx

besgstan profile image
besgstan in reply to AnnieAnnie

Hi AnnieAnnie, so are you having the steroid prescription privately elsewhere in conjunction with your nhs treatment?

I read into the nk testing as my current clinic said ‘it has no research basis and everyone has the cells anyway’. I like yourself found this statement to only be true of the blood test, not the uterine sample. I couldn’t find anywhere offering the uterine test in the price bracket of hundreds though. They were all over 1000.

I haven’t had the clotting test but after the first failed transfer (all 3 have been good blastocysts just like yourself) they put me on fragmin to thin my blood anyway. Similar situation to yourself in that I have never had a positive pregnancy test ever. I also feel like they consider me as ‘unexplained’ rather than as a woman either endometriosis with all the pointers associated with that and immunity etc. Thanks for sharing where you are up too. I am just very cautious of using up our 4 blastocysts as they see 3 failed ones as par for the course. Xx

AnnieAnnie profile image
AnnieAnnie in reply to besgstan

No I've not been prescribed steroids. If I get a positive for high uNK Cells then that's what I will be prescribed. I will pm you the hospital name. My tests costs £540 so not the thousands you expect and the tests are undertaken by leading professors in this country. I have been prescribed clexane and paid for the c4m2 test privately and had to pay for the prescription privately on my last round. I'm hoping once I've had my last biopsy I will know more and if the results come back normal then the only thing left is the embryos themselves and so my eggs! xx

besgstan profile image
besgstan in reply to AnnieAnnie

Thanks so much for this. That’s no bad at all considering a consultation price is not much less than 300. I have had a look into Coventry this afternoon. I would rather be tested and know for definite than waste our embryos and watch my egg deserve diminish until I have reached whatever the magic number of transfers is before they deem it a reasonable avenue to explore. A lot of time the time besides saying there is no evidence they also try to put me off about it being ‘expensive’, which makes me laugh... although I am NHS I doubt for one minute the medicated cycle that went tits up and the two collections since have been ‘cheap’ xx

AnnieAnnie profile image
AnnieAnnie in reply to besgstan

This is what I can't understand about the nhs. Once you're eligible for ivf cycles (this took me some 3 years plus the 2 years I had to be trying before being referred) they just want to get you through with the ivf. No looking into what has actually caused you not to conceive other than the scratch the surface tests. If I hadn't wanted to know why, I would have had my 2 nhs cycles and be no further forward with knowing why it hasn't worked. I truely hope you get some answers xx

besgstan profile image
besgstan in reply to AnnieAnnie

Totally agree and my reflexologist thinks the same. She gets frustrated that they don’t like at the wider health of both partners. It’s just a few blood tests. I remember that first consultation he actually mmmm and ahhhd and said ‘well what to do as there is no saying you can’t get pregnant’ (I had surgery to remove the Endo) and then after a pause he said ‘I will recommend ivf’. At the time we were relieved and interpreted it as finally having some help. Looking back we were naive and weak due to the surgery and two years of trying. Xx it’s frustrating xx

Penders profile image
Penders

Hi I'm private and my consultant has said we can use prednisolone if we want as we have had two miscarriages. Been trying to decide if we should use it or not. I've got till Sunday as that's when i need to start taking them. They use them with failed implantation and have seen the benefits of them. We haven't been tested for anything so may not need them but I guess we've got nothing to lose by taking them. Good luck xx

besgstan profile image
besgstan in reply to Penders

Thank you Penders. It’s good that your consultant is open minded. Mine doesn’t want to know 😪 we actually considered sacking off our second funded cycle and going straight to private as we have already chosen where we would go next. It’s sad to consider that when all we want open minded individualised care. Good luck with your cycle whatever you decide regarding the steriods xz

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