Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

Hi everyone

@Tumby I did superovulation a couple of months ago. It ended up costing about £1100 in the end as I needed 2 scans as I didn't respond at first, so had to go back in the same week. I also ended up with a new diagnosis (adenomyosis) which caused a lot of anxiety. I had 3 follicles but no luck. And I had my ivf baseline scan just before af was due and one of my follicles didn't ovulate, so I had a 16mm left on cd26.

@Luckyducky2 good luck for Monday 🤞 ❤️

We've spent well over £10,000 now and only a chemical pregnancy so far. The tests I need are another £2500 if not slightly more when I add in the consultation fee that they've said I need. All before we can think about transferring one of our embryos. I said to dh the other day, if we're lucky to have a successful pregnancy, it will likely be an only child as we can't afford to do this again. But I'm not stopping yet.

Hope everyone is OK xx

@VenusStarr thanks lovely 😘 the nerves are kicking in already! Hope you're doing okay xxx

@Luckyducky2 Argh, with you on the lottery win. I always go there with an approximate cost in my mind, it's always more...! That's so tough for you having to come down from Scotland each time. I hope your treatment is going well so far. Xx

@treesall Yes... my scan is next week. I'm literally counting the minutes, driving myself mad... The lack of symptoms has been causing so much anxiety so it has been a small relief to here the prednisolone could be playing a part. But who knows. The wait in is awful isn't it. Great news on your clear blue tests. It helps to see that progression doesn't it.

IF things work out, I'm a bit confused about what to do... eg NHS booking appointment... Nuchal Scan - do we have to have that at CRP? Is that with another doctor and prob really £££?!

Getting ahead of myself there, which just made my stomach flip a bit!

Anyway - wishing you all the luck for Monday. It will be a milestone ticked off and then just a matter of trying to stay positive as the journey continues..! Xx

@CherryO88 Thank you so much for the reassurance, it is much appreciated. Something to cling to until next week! Wishing you ALL the best for your scan tomorrow ❤️❤️ xx

Hi all hope your all doing well, just seen your comments about the Nuchal scan & although it is expensive at CRP I would definitely recommend having it with them (I didn’t have the NHS one) it’s a good 40/45 min scan & they check absolute everything & really put my mind to rest the scan is with Professor Akolekar.

I was on complex plan with Hydroxy, Cyclogest, & Intralipids.

Fingers crossed to everyone testing this week ❤️

Hi all, I was wondering if anyone can help Me. I have hashimotos disease with thyroid antibodies around 200. I have only been prescribed dosage of 10mg of predinisilone? Isit enough? I'm so worried!

Arghhh ladies I am so anxious. This pregnancy feels exactly the same as all my miscarriages. Once again I have no real symptoms and no sore boobs. No period type pain etc. I know it's pointless worrying but I am so convinced this one is going the same way! Argh if I'm going to miscarry I just want it to happen now, not drag on for weeks and end in another MVA. Wahhhhhhhh. I just want to go to sleep and wake up when I know either way!

I'm sorry to moan, I know it's the same for everyone. I was really positive about it until last night and then just got a strong gut feeling that it's not gonna work after all and now I am in such a funk! No point to this other than to offload.

Hi everyone! My apologies, I think I mixed up some of my responses in my last post 🙄 (an indication to the state of my brain), but I really hope everyone is doing okay. ❤️

@LRL12 thank you so much for the feedback on the scan with the professor. It's great to hear positive personal experiences - if we get that far, I think we will go for it too. 🤞🏼xx

@Hema902 sorry if this isn't very helpful - I'm taking prednisolone for highly active NK cells and the dosage is 25mg per day. Xx

@treesall I had an 8 week scan yesterday with Mr S and at the moment things are okay but that bloody haematoma (ha 🙄) is still there. Thankfully it hasn't grown. I'm stopping aspirin for a bit to see if that does anything.

Anyway - I'm still pretty much symptom less so I was hoping this could reassure you. After reassurance on here and emailing the nurses, I have been told that the drugs really can mask symptoms so am trying hard to accept that!

When will your first scan be? The wait is excruciating isn't it. I've literally yo-yoed between positivity and despair, playing out the situation in my head and hearing 'the words' go either way. Mental torture that is entirely unhelpful. Going to try to stop that now and look for some meditation apps or something that stops my mind going down rabbit holes!

Stay strong ❤️.

@ginandoreos yay! Great new on your scan, I'm so pleased for you!

@treesall never apologise for having an offload! It's totally shit and we all get it ❤️
I just wanted to repeat what @ginandoreos said about pred masking symptoms. It really did for me too x

Thanks @Daffodil21 however unfortunately I'm not on Pred, he's trying hydroxy instead. I think that's part of why I'm convinced this one isn't working, I've read so many examples of women who still miscarried on hydroxy and only had success once they tried pred. Sigh!

I'm just going out to buy a weeks indicator even though I know it won't say 3+ yet. I am a ball of anxiety and I've lost the plot!!

Hi @treesall - try not to worry! I was also on hydroxy only and had no symptoms at all for the first few weeks. I was convinced it was a chemical because my boobs didn’t change or become sore like they had done in the past. Anyway when I hit 6.5 weeks the vomiting started and is only now easing off at 15.5 weeks. Boobs are still not at all painful, maybe slightly bigger and I have a small bump which helps with my anxiety a bit.
The first few weeks were so hard though and I really empathise with how you’re feeling. Wishing you all the best of luck and everything crossed for a healthy pregnancy and baby x

@NessyT91 thank you so much for sharing that. It does help a lot. Arghhhh hate this so much!

I'm still on 2-3 of course but very pleased that at least it hasn't gone back to 1-2!

@treesall I've also spoken to a few ladies now who had success on Hydroxy and one of those ladies had suffered 8 losses, there is so much hope, we just have try and battle the anxieties as best we can ❤️. It's so so hard isn't it. Hang in there xxx

Hi everyone, I am new to Mumsnet and to this thread. I have had a bad day today and have been reading through your messages for hope and comfort so I thought i'd take the plunge!

I am under the care of Dr. S - I have had two miscarriages so far this year and a lot of complications in my second one. I go back to Dr. Jan next week to check my latest procedure hasn't left any adhesions, I'm so nervous! It feels like every single time I go for an appointment i always get bad news - this miscarriage has been going on since April!

I have high and active NK cells so I have just started my plan - I'm on the HCQ one and intralipids.

Nice to meet you all, I'm hoping you can keep me company in this journey

@treesall I was only on Hydroxy (not pred) Cyclogest & Intralipids & had a successful pregnancy after 3 losses. X

Does anyone know have people generally had more success with hydroxy rather than pred? How do the consultants determine which is suitable?

Are intralipids also considered to be important? They won’t prescribe them in N.Ireland. Which is so frustrating given how close we all are geographically.

As you can tell I’m in planning mode again post loss. It’s like feeling around in the dark in N.Ireland 🤨

@Lozfish so sorry for your losses and to hear what you’re going through. It’s so hard that the months seem to disappear with all of this isn’t it. It can take so long to get to the point where you’re able/ready to try again. So draining! A horrible rollercoaster! X

@NImama I’ve been going to a clinic in Dublin for intralipids. It was too difficult for us to travel back to Mr S for treatment so once we got our plan from him she was happy to treat us based on it. Her name is Dr Lyuda and she’s based in First IVF Dundrum. Hope that helps!

@NImama thank you - it is indeed a horrible rollercoaster. I've had three pregnancy announcements in the past few days as well so I'm extra low at the moment - all people who started trying long after we began this journey.

I started Hydroxy yesterday on the loading dose - for any ladies who've been on it, should i expect any side effects? I have a headache already! Feels like being pregnant and not pregnant is a constant cycle of feeling like crap and I imagine these drugs aren't necessarily going to help

Morning ladies...I tested 10 and 12 days PO and took a test this morning and it's positive!!! WTF??????? I'm freaking out so much. I'm trying to get in touch with CRP to have intralipids but they're just not picking up. I'm also worried as I'm on the complex plan but I stopped taking the Cyclogest after the negative. I'm also having quite strong abdominal pains similar to the last few miscarriages...sorry for the massive ramble, just can't get my head straight. I had some light pink bleeding a couple of days ago that I'm really hoping was implantation bleeding. Not had that before...

@treesall I'm also just on hydroxy and Cyclogest...hoping and praying that it works for us!!! Xxx

@ginandoreos and @LRL12 thank you! That's good to hear. Arghhh the stress!

@Lozfish I had a racing heart feeling for the first 2 days of taking hydroxy but that didn't last long and I don't notice any effects now (been on it about 6 weeks).

@Tumby wow, massive congratulations!! Have you tried emailing the nurses address at CRP? They responded quickly to me and got me in for intralipids the next day. Are you local or do you have a long way to travel?

@NessyT91 thank you very much. Great to hear this is an option because I was worried about travelling if we decided to see Dr S.

Do you mind me asking how much it cost to have an initial plan from Dr S and then how much it’s costing for treatment in Dublin? Sorry if this is a crazy number of questions. I’m just trying to understand what my options are 😐.

Did you also find options in NI very limited? Our other option is to see CB here in NI but she doesn’t do private and waiting list is 5 months at least. Thank you! X

@NImama no problem! I think I spent about £2,500-3,000 with Mr S for the tests and two appointments I had with him. We decided to find someone in Ireland then because travel was so difficult at the time and also due to Brexit Irish pharmacies wouldn’t dispense a UK prescription anymore so it all became a bit of a nightmare! We’re based in the republic so logistically it just wasn’t working out using a UK doctor. At least you won’t have that issue in NI.

We actually saved a bit using the doctor in Dublin. Intralipids cost €200 and scans were €80. The doctor was really lovely and approachable as well. All in all I probably spent about €1k with that clinic.

Best of luck with it all!xx

Hi all, those that were on pred did you have any symptoms in the 2WW. I'm 2dp5dt no symptoms- not really sure what to think ..

Hi all, this is my first time posting.. I wanted to ask, has anyone developed bad side effects to the Hydroxy at all? I started it (with a loading dose the first two days) and felt so awful that I completely stopped it 2 weeks later ☹ I had bouts of dizziness, I was nauseous, had lower back pain, developed tingling / weakness in my legs, arms, and then tingling in my tongue / mouth / head. Then my jaw started to get stiff and clenched and this is when I got really worried as those were neurological symptoms. I emailed the Nurses team, Mr Shehata didn’t think the symptoms were due to the Hydroxy except for potentially nausea and dizziness, and he suggested I cut my dose to 200mg per day only and see how I feel, but it got so bad this weekend that I just stopped. It is now my 5th day off the hydroxy and I am starting to feel human again….
Would anyone know what my options would be now? Shall I maybe try taking it again in a few weeks and see how it goes?
I know I should be asking Mr Shehata but I am so upset and disappointed in myself that I reacted so badly to the drug, I was looking forward to my treatment for months and was even relieved when I got prescribed Hydroxy instead of Pred as I thought side effects from Pred were way worse…..

Thank you all for this great thread by the way xxx