Steroids in this current environment for elevated NK cells

[Shirazlover2013]

Hi all, the last posts I could find on this are 2mths old now so I was wondering if people are taking steroids now for NK cells issues or not?

Tonight my consultant called with my NK cells results, my TH1/TH2 cytokine ratio is 33 which is above the acceptable range of 13-31. The recommended treatment is steroids but I don’t yet know which one or dosage. My clinic will allow steroids if I sign a waiver confirming I understand the risks. I need to make a decision tomorrow whether or not to start these as it’s my egg collection tomorrow. Timing eh! So I was just wondering if anyone else was taking steroids at the moment.

[Westielover16]

Hi,

My clinic had previously prescribed them as we were initially due to have our 5th fresh cycle in late Feb/early March. Our cycle was cancelled due to COVID but when we stared again our clinic advised not to take them due to increased risk of COVID. We didn’t want to wait until the clinic could prescribe them again and really still wanted to take them as my NK results were really high. So I spoke with our GP and got him to effectively prescribe them for us since the clinic wouldn’t. I told the clinic about this and they agreed to go ahead with the GP being responsible for the steroids.

My clinic recommended to start them from day 7 of stimms and I took aa dose of 25mg prednisone until OTD. Unfortunately this cycle failed but we plan to do the same thing for our FET in a couple months.

Don’t know if this info helps but we had no problems with taking them and just kept a bit more strict re social distancing due to the impact steroids can have on immunity.

Good luck for your cycle and egg collection xx

[Hidden in reply to Westielover16]

Can I ask how you got them off your gp x

[Westielover16 in reply to Hidden]

Hi!

Our GP was already aware of our IVF treatment cycle as I had planned with them to take 4 weeks off work for the cycle. So when speaking to him about the sick note I advised him of the situation regarding the steroids. As my treatment had been planned for earlier in the year I already had enough steroids tablets at home to take until OTD. What I needed was a further prescription to either take till 12 weeks if successful or some to taper off if unsuccessful. I’m lucky and our GP was really happy to provide them. All he wanted was copies of the letters from our clinic outlining what the previous treatment plan had been.

I was really worried that they wouldn’t agree to provide them but he was really understanding and said that they prescribe them all the time for a variety of things so agreed to give them to us.

We didn’t get to do the interlipids but looking at the research on NK cells the steroids seem to have a better impact so we felt that was the best we could do and we didn’t want to wait any longer.

Xx

[Hidden in reply to Westielover16]

That’s really good! I’m finding this a constant battle some clinic are doing it other aren’t I don’t see why all the information is so conflicting my clinic says it can’t due to hfea but it seems to be more of a choice 🙈as if ivf isn’t a battle in itself now this! X

[Westielover16 in reply to Hidden]

Yes was the same for us. We were due to start a cycle in June but literally an hour before my baseline scan, the clinic called and said due to the Hfea advice changing the day before they couldn’t do the steroids any more. As I needed them for the 12 weeks if successful. We cancelled for June and that’s when I spoke to the GP. I’m 40 in Nov so we feel like we have a ticking clock adding pressure. Also my husband is a teacher so if we needed to isolate to take the steroids doing it while he was working from home or on holidays made more sense for us. We were lucky the GP was on board.

It’s really frustrating to hear some clinics are still going ahead. Is this mainly people having treatment abroad? My clinic has been really clear that they couldn’t prescribe/advise or really even talk about the steroids. And if I had a question as this was our first time taking them they just redirected me to speak to my GP. Was frustrating but needs must.

Fingers crossed for you and hopefully soon the hfea will change advice as this is delaying a lot of people’s treatment.

Xx

[Hidden in reply to Westielover16]

Same here I was due to start injections and was sat waiting for my scratch when they just popped in and told me they couldn’t go ahead with nk treatment no a lot of clinic in the U.K. are doing it Iv even spoken to one offering it by the looks of things they are getting people to sign a wavier which I’m happy to do I don’t have tome on my side xx

[C_C_H]

Hello! My clinic is still prescribing the steroids I need for elevated NK cells but I have gone down from 25mg to 15mg. I have also been on another immune suppressant for the last 12 weeks. I’m personally not too worried about the risks, but I am mindful of the situations I put myself in. I was just keen to do all I could to help increase my chances of IVF success. Good luck tomorrow 🤞

[Hidden]

Sorry to jump on but I’m finding this situation sooo stressful I need 25 mg of prednisone and a intraliped I ha e a low amh so my chance of having a baby get less and less as the months go on I have been told by my clinic they cannot prescribe nk med as the hfea won’t let them but I also know so clinic are doing it I don’t u sees tans how some can and some can’t? X

[Nuszkahope]

I have to have steroids with my treatments, my clinic in Spain told me that COVID is treated with these steroids anyway and not to worry, I was on 10 to 20mg a day x

[Hidden]

Hi, I'm currently taking steroids and my FET is tomorrow. I was a bit dubious as I'm having to fly to Czech Republic, my clinic still added them to my protocol and also intralipids but decided just to go with the steroids (which I had left over from a previous cycle). I've just been ultra careful and limiting my contact with people. It is a tough decision but wishing you the very best of luck xx

[FertileMind]

Hi Shiraz

The HFEA have always been against steroids (red) as they don't think they work...despite the father of immuno reproduction Dr Alan Beer having over 30 years of research. So, they say they advise against it during Covid, but have always advised against it, so nothing new. Intralipids (under £400) and IVIG (£2000) a pop, have shown the same efficacy as eachother. My clinic is offering this, but not steroids.

I brought my cytokines down from extremely high (over 50 TNF-a) to within normal in 3.5 months with diet and supplements. The key is to reduce anything that causes inflammation (affects implantation) ie. sugar, alcohol, stress, lots of meat, lots of dairy, processed food. Ginger is a great anti inflammatory, ground cloves too, Ceylon Cinnamon among many others. Then take antioxidants like quercetin, alpha lipoic acid etc.

Good luck! I hope to read you have a BFP soon!

[Shirazlover2013 in reply to FertileMind]

That’s interesting about diet and lifestyle to bring down inflammation. I’ve just spent the last 4mths on a diet under a fertility nutritionist which pretty much covers off all of the diet suggestions above and as I have PCO tendencies a lot of what I’m doing is also to reduce inflammation.

[Littleflower82]

Sorry I wanted to jump on this post aswell and ask what dosage of steroids do u all take during ur cycles? My consultant nvr was a fan of them but now with covid like alot of u says he cud lose his books if he prescribes them an I end up getting covid.

[Shirazlover2013]

So I’m going for it! I’ve just started 25mg of prednisolone daily.

[Cinderella5 in reply to Shirazlover2013]

Oh just saw this! Good luck.xx

[Cinderella5]

Hey, I'm taking steroids. I just felt I couldn't risk not taking them to be honest! I actually had a stash at home that I had bought the last time in Athens so a bit self medicating & didnt ask my clinic....naughty I know.🙈 I am however taking high dose fish oils which also help reduce inflammation so you could maybe look into that?! Sorry if its a bit late...hope all went well!!xxx

[Shirazlover2013 in reply to Cinderella5]

Yep I’m on high dose fish oils 👍

[Sarah83ap in reply to Cinderella5]

Hi Cinderella,

What day in your plan did you start your steroids please?

Sarah

[Cinderella5 in reply to Sarah83ap]

Hi Sarah, sorry for the delay....my clinic usually have me start around 5 days before transfer at 20mg for 4 days then drop to 10mg. I kind of went off on my own tangent and started them early on day 1 of my cycle at the 10mg to make sure they had built up in my body....naughty I know but I had them already and they had said I could decide whether to take or not! Good luck.xx

[Sarah83ap in reply to Cinderella5]

Thank you. I’m going to do similar. I really think they could be the key, and if not then I won’t regret not taking them. Xx

[Cinderella5 in reply to Sarah83ap]

That was my thoughts too!! Good luck.xx

[Shirazlover2013]

Does anyone know how quick steroids take effect for nk cells? I only started the day after egg collection and now it’s looking like I’ll be having a day 3 transfer as this round is going poorly 😢.

[Shirazlover2013 in reply to Shirazlover2013]

Just in case anyone needs this later - I spoke to a consultant who said it is fine as implantation doesn’t take effect until days 6-8 so the embryo will just sit inside the uterus for a few days whether it’s a day 3 or day 5 transfer. So my body has a few days to get the steroids working to reduce my nk cells before any potential implantation occurs.