Anxiety about all the immune based meds

[Skittles11]

HiIt looks like when I do an embryo transfer I will be on quite a large cocktail of medication. Recommendations for me are IVIG, steroids, clexane, asprin and intramuscular progesterone. I had an array of tests done which showed high NK cells and cytokines and an issue with the blood hence this medley.

I'm already feeling quite anxious about taking all of these meds (even though my transfer is not yet) - the side effects as well as any long lasting effects.

If you have had a similar protocol or worked with a Reproductive Immunologist it'd be great to hear from you on how you found these meds. And any advice.

Thank you in advance. Xx

[Elsidee11]

hi skittles - are you on Instagram? There’s a lady @ivf_baby_d who is on similar drugs due to NK and she often documents her journey, side effects etc. sorry I can’t help more, but she might be worth following, she’s also quite engaged in replying to people. Good luck xxx

[Skittles11 in reply to Elsidee11]

Thank you for this. I will give her a follow xx

[Bed12]

Hi Skittles, I was on a similar protocol for my last fet though without the IVIG. I also had down reg of buserlin for two and half weeks plus steroids, inhixa blood thinner, aspirin, estrogen patches and tablets, progesterone pessaries plus lubion injections. I did find it quite intense. The buserline was by far the worst part of it. The steroids gave me insomnia so I would recommend taking these in the morning rather than the evening. The blood thinning injections and lubion progestrone injections were more inconvenient than hard or symptom inducing e.g. two injections a day left minor bruising and sensitive skin around the areas I was injecting. If you can take some time off while taking the meds that would be good. But I’m fine now and it is but a dream so it passes. Good luck xx

[lianm8]

hey! I had exactly the same protocol- Clexane, Lubion (progesterone shot) plus three pessaries, IVIG, prednisalone- only thing I didn’t take was aspirin which is the only difference. any questions you have private message me

[Skittles11 in reply to lianm8]

Thank you, I will send a private message x

[Seren0119]

I took all of this and more - was absolutely fine x

[Ganges]

I’ve had all of this except IVIG. Have the steroids in the morning with breakfast. Otherwise I was fine, other than a bit of bruising x

[Ah46]

hi I had a similar protocol to you, accept I did intralipid rather than IVIG and took lubion and cyclogest too.

I was so stressed in the run up to it as it felt so overwhelming, wondering how I was going to manage everything. But once I started the protocol it all made a lot more sense and I quickly got into a routine with the medication.

I didn’t have too many side effects, other than tiredness, some headaches and bruising around injection sites. The PIO can be a little sore, but using a hot water bottle on the area before and after helped.

It does take a bit more planning than a standard protocol. We cleared our diaries as much as possible and focussed on the transfer. Having a little treats planned, whether it be a face mask or nice takeaway, helped too 😊

It worked for us and we are now 23 weeks pregnant with a little girl 💕 Hope it does for you too, best wishes x

[Hanj10]

Hi I did immune protocol of the same drugs as you but instead of IVIG I did intralipids drip. All was fine and the FET worked (after having 6 miscarriages prior to doing the immune protocol) my little boy is now 18 months old and I’m about to start down regulating for another FET! The only side effects if you could call it that was struggling to sleep which I think is the steroids but could also just be a general pregnancy thing!! Good luck x

[Anonymou5]

Hi Skittles, I have another collection in Oct and ERA (hopefully). Then on the same drugs as you (instead of IVIG it’ll be intralipids). I really really hope it works for you, keep us updated xx

[XOXO13]

Hello,

I was on the same mix of medication including dexamethasone as well, and another one I had to take in the morning (I can’t remember the name of that one). It was a lot to take, and I felt exhausted by it but also in a weird way, I felt like I was really giving it my all.

I felt bloated and uncomfortable, and I found POI the most painful (I would get a bit teary with that one as it just burned so bad) but the rest were fine. I didn’t feel that I had any long term effects physically. Maybe emotionally, for instance we are wanting to try for the next baby (I had my twins with that protocol) and I can’t mentally bring myself to start the process again just yet because taking as many drugs as I did, I found it draining. But, as I said, at the time, I felt like it meant I was really throwing the kitchen sink at it. I was gentle with myself during that time, lots of self-care, fresh air, yoga/pilates and healthy nutrition (with some naughtiness thrown in). To help with how bloated I felt, I just carried water with me everywhere and tried to drink a lot. And I would rest as much as I could to,

You’ve got this, best of luck with it xx

[Skittles11 in reply to XOXO13]

Thank you for going into detail about your thought process and which bits were challenging in particular. Can I ask were you having IVIG alongside all the other bits?

Also do you remember how much dexamethasone you were on?

Thank you for the tip about water! I will defo do this!

Xx

[XOXO13 in reply to Skittles11]

I was on intrapilids and I was on a small dose of dexamethasone- I think 0.5mg. I was given prednisone for a short time post transfer but then they swapped me back to dexamethasone and I stayed on that until around 14 weeks of pregnancy before I was weaned of it. Xx

[minnesota_girl]

Hi skittles, I understand the anxiety, I felt the same. I've been on the exact same protocol and had no side effects, honestly. I was on 10mg of steroid, not sure if yours is higher but I was so worried and it ended up being super manageable. In fact, I felt actively great the whole time I was on the protocol!! And it was reassuring to feel that I was on things to help support me and my embryo, who is now kicking me regularly from the inside at 23 weeks!! 💕

The clexane bruised me a bit but otherwise I was ok xx

I wish you all the best ✨✨✨✨✨

[Skittles11 in reply to minnesota_girl]

Hey, thank you so much for the response and the reassurance. So happy to hear things have progressed well for you. Can I ask a couple of additional things via private message please? Xx

[minnesota_girl in reply to Skittles11]

Yes of course, go ahead!

[Skittles11]

I had NK cells tested from blood and from biopsy. In my blood they were really high but in the biopsy they were normal. I will be having prontogest once a day and cyclogest 400 twice a day

[Elmo13]

Hi Skittles. I’m sorry to jump in on this but I wondered if you’d mind giving me the details of the reproductive immunologist you’re seeing. I’ve had 5 transfers, last 2 ended in miscarriage. I’m 42 and considering the next steps.

[Skittles11 in reply to Elmo13]

I'll send you a private message as I don't think I'm allowed to say publicly