Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@Tgrf55 - So the price of the super ovulation, what does that actually include? Just the scan?! I assumed that it included the trigger shot and the letrozole too. It's SO expensive!!! Reading through all the paperwork last night it put doubts in my mind that everything says "there is a lack of scientific evidence this helps" etc.....not very reassuring really.

It is so much to deal with, I agree. My boss is leaving soon and i will be getting a new one and i am already thinking how will i cope with my workload plus all of this pressure on top. Everyone around me seems to get pregnant and that's it - job done! It's so, so hard and of course unless you have been through it, no one really understands.

I really hope you do get a positive test. How long is your luteal phase usually? Mine is 10 days and when i was pregnant even on 12DPO it wasn't a dark line so if your luteal phase is longer it may take longer to show on a test. Crossing everything for you.

BTW, what are your thoughts on another ectopic happening now that you have had a hyfosy and the foam made it's way through the tube? I'm still really scared of that but praying it was just bad luck before. How do you feel about it?

Sending you so much love and positivity xxx

@Tgrf55 unless they are double charging me, the super ovulation cost includes the scan and consultation, the medication is all on top.

My luteal phase is usually 14 days, so I appreciate it might be early. I just think it would show by now, as technically I need to stop the meds. I haven't though, will give myself another day.

Yeah I'm really worried about another one, and also really worried there's still a blockage in the other tube. The foam came out slowly in my hyfosy, which I have questioned a few times. But Dr S was happy it came out and said there could have been something that was dislodged. It plays on my mind a lot, but I try not to think too much about it. I guess the bottom line is, if it happened again we would have to do IVF which is looking more and more likely anyway. I'd like to think that surely I can't have more bad luck but I'm not sure that's true either. Sad way to be thinking of things xxx

Thanks @Tgrf55
It's easy to see the basic cost but then it's helpful seeing how they can mount up monthly. Of course I would love to have bi-weekly scans I just wonder if you cannot afford it what Dr S's thoughts would be is all. Do you have the intralipids only on a positive test, or 'just in case' each month aswell as the other medication?

You have unfortunately become experts in this field and I already even feel like those outside of these situations will never understand how powerless it makes you feel, I am very early into this journey so I can't imagine how hard it is for you all and can only let you know, as I've seen many others on here, you have the support of this community no matter what your decisions are going forward. It's a tough road 😘

@myrainbowjourney crossing everything for you this month still. Keep us posted! I feel the same about the ectopic it's a total game changer. My MMC was horrendous but i could argue that at least i didn't have emergency surgery and lose my fallopian tube with that. You know your life isn't going great when you start comparing which is worse out of a MMC or an ectopic LOL! If i don't laugh i will cry.
I was planning on asking Dr S when i am next in whether the super ov would increase a chance of an ectopic due to releasing more eggs but assuming it doesn't otherwise they wouldn't suggest it?! I agree. it had to just be bad luck and WON'T happen again. It can't! Also thanks for clarifying on the cost of super ov. I think i was being naive assuming that included the letrozole and trigger shot.

@FfayeN thank you - finding this thread so helpful and supportive already, i am so glad i found it. I'm not sure what Dr S would say if you can't afford the scans but def ask him. It really is so much money it is a strain on so many people but it will hopefully get us all what we want eventually xxxx
P.S for me the intralipids are once a month before ovulation and then once a month after positive test i think, need to double check that. But your treatment plan may be different xxx

@FfayeN I also have to have intralipids before ovulation, so round about every 4 weeks.

That's a really lovely message, this group certainly is such a huge help. It is so rubbish that we all have to be here, but it's comforting being able to talk to people who understand. It's so isolating otherwise xxx

@Tgrf55 haha that made me laugh! What has life become when we are comparing these things. I am in no way saying one miscarriage is easy to deal with - it absolutely isn't - but I often think about how I felt then and where I am now and I weirdly wish so much that it was one miscarriage and then plain sailing. I remember thinking it was absolutely horrendous but I never thought I'd have another one, not deep down. Can't believe I'm here now really. But like you said, you've got to find some lightness in it all, or things would be pretty grim!

Thank goodness for this forum xxx

Hi all,
I'm am completely with you on the rant. Costs have come back for surgery to remove the cysts in 4 weeks and it's £4.8k with Dr Jan. Fml.

@Tgrf55 the letrozole and the trigger are not that much, think it was about £80 total for both. Not that much COMPARED to the scan/consultation I should say!!!!

Regarding IVF pricing, the price document they sent me is 5 pages so I think there are lots of options depending on your personal situation.

Base cost is £4.5k for one round but there are mandatory blood tests/consultation fees that look to be about ~£2k on top. They also highlighted another "IVF cost" which said it ranged £800-2500 but it wasn't clear what this was and I havent asked so it might be that on top as well.

I feel really let down by the clinic regarding my recent experience - I raised concern when I didn't think I should be taking the shot at the time Dr edge suggested and now I've developed £5k worth of cysts! So we are probably going to stop messing around with super ov and go for IVF once the current situation is resolved but going to look into other clinics.

Hi ladies, just been catching up. @myrainbowjourney I’ve had a similar week to yours. Lots of announcements, feeling so down etc. I’m trying to focus on the idea that we all deserve some luck soon.
@VenusStarr I’m sorry re the anniversary. I felt the same re my dates and really struggle with them and thinking where I’d be if things had gone to plan without the MCs. Huge hugs re this latest set back re the scarring too but I’m sure you’ll get there after that. We all deserve the goal we want after all these hurdles. Keep going.
I’ve been trying to come to terms with the fact it will need to be Ivf. Can’t keep hoping on the super ov which hasn’t worked unfort. It had taken a couple of weeks but I think I’ve now accepted it’s inevitable. I should start next week if all goes to plan.
Thinking of you all xx

@89Hope are your cysts from the super ov? This is a worry of mine. I did think that producing more eggs will surely mean cysts will develop. What type of cysts do you have if you don’t mind me asking? That’s so expensive to remove them. I think I’ve had a bit of a reality check working the prices out for everything today.

I’m wondering whether I should go down the super ov route as lots of you seem to be saying it isn’t working for you. Have there been many success stories from the super ov? Xxx

Oh and I forgot to mention I had to check something with the clinic earlier and prices have increased this month most things are around £15 more exp from April xxx

Yes I meant to mention the price increases too. It rallied so have stayed the same though thankfully. Everything else has gone up xx

@Tgrf55 they say they don't know what caused them. Dr Jan said it could be from not ovulating after I did the trigger (I had all the symptoms & positive ovulation test the week before I was advised to trigger). So I dont have any proof and it could honestly be a complete coincidence so I wouldn't warn anyone else against it. I've never had more than 1 folicle either so it just doesn't feel like a good option for me personally.

Fair enough something has gone wrong but it makes it feel worse when it took 3 emails and until day 44 of a 23 day cycle to get a scan to see what was wrong and they weren't emailing me back, then I ended up having to get an identical appointment with Dr S and Dr Jan within two days at £600+ cost to be told the same thing. I just feel like you pay so much and the service can be quite hit or miss.

Re the cysts, they are both on the ovary, one is blood filled and one is fluid. There is a risk it will cause torsion and he said in that scanario the most common treatment is to remove it altogether (which is terrifying).

@taffeta00 I know how you feel on the emotional side of things. I had to come off social media altogether as I just couldn't cope. It's a really tough journey we find ourselves on that feels so unfair. Glad we have this group, it can feel very lonely sometimes. Xx

@89Hope sorry to hear :-( it’s just not what you need on top of everything else. Do you still need to track ovulation with the super ov programme? I wasn’t planning to I was just going to let them tell me what to do and have as much scheduled sex as possible around that time lol. I hope you get it sorted with dr jan I’ve read good things about him. Sending you hugs.

Ladies I’ve been reading so many horror stories about pred I’m having doubts about the entire programme now. I know I shouldn’t be googling but from what I’ve read the side effects just seem horrific. I feel so traumatised bu everything that’s happened so far I really can’t handle these side effects too. I’ve read about people gaining insane amounts of weight and getting a buffalo back from gaining weight too of their back?! I’ve gained a stone since my MMC from feeling so depressed and I’m self conscious of it. I really don’t want to gain any more because it will just make me feel worse about myself. Do you think the weight gain will only happen if you over eat? I don’t even think I would be exercising much because I know if I am lucky enough to get a BFP I will be so scared of anything going wrong that the gym will be a big no. I’ve also read about awful mood swings etc and serious effects on your bones and vision later on in life.

I’m just really doubting everything today it seems so scary reading the side effects. It doesn’t help that CRP state on all their paperwork there is no evidence this works. On top of all that the money side of things…. I’ve had one MMC and one ectopic I don’t even know the NK cells really caused the MMC. But I also know if I became pregnant again without following the programme and miscarried I would blame myself for not going with it.

Sorry for the long negative rant I just feel all over the place today. So far I’m taking all of the pre natal vits, thyroxine, metformin, fyloacid, asprin, CQ10 and feel fine so it’s only the pred and cyclogest im worried about. I’ve taken cyclogest previously and it made my stomach upset but i also had ectopic at that time so maybe it was that. Any encouragement or words of wisdom greatly appreciated xxx

@89Hope awww just seen your post. I'm on the way to Mr S for my ovulation scan so nervous. I just wanted to say that I had exactly the same fears when I read all the side effects of the medications. I was in a really bad state mentally just thinking of what will happen to me. But I had had 4 miscarriages at this point which is the reason I went to Mr S as my last resort. I have the say the prednisolone was actually not as bad in the end. I had no major side effects. In fact it helped as I suffered Really bad HG in my previous pregnancies to the point I was hospitalised. So for me prednisolone ended up working really well for me. The only side effects I had was moon face and I did gain some weight as in I did look chubby but I didn't mind that side effect as I knew I would be putting weight on anyway being pregnant which once the baby is born I can work on losing later. But I was later diagnosed with Gestational diabetes and so had to change the way I eat. This made me lose weight as I had cut out all sugars so by the time I gave birth I was really slim and only had a little weight on my face and the rest was on my belly. Also please remember prednisolone is only for 12 weeks. The only side effect I had was with hydroxicloroquine - my hair fell out to the point I had bald patches within a week of using it so I stopped taking it.

On a positive note I had a successful pregnancy and had an adorable baby boy. The only negative was that he had to be born prematurely as he wasn't growing so we are quite lucky that he even made it. Mr S said this could have been because I stopped the hydroxy.

So we are trying again and My new plan included hydroxy but again my hair fell out so I stopped. Mr S has suggested I go on the GCSF injections which I am having palpitations about and going out my mind thinking of the side effects and also if it's really going to help or not? I don't know enough about it. Anyway I've got my scan today and will ask again about this. I didn't get pregnant last month on the superovulation plan so I'm hoping it happens this month. But at the same time I'm so scared I might miscarry again with this new injections or if I decide not to take them and miscarry I might regret it too. It's so horrible being in this situation.

I hope it all works out for you whatever you decide xx

@Tgrf55 sorry the last post was meant for you oops

@VenusStarr I’ve also been told I may have scarring after a D&C. This was picked up on one of my follicle checking scans during my last round. I don’t know how common it is but I’m sure I wasn’t warned about it. I will also be having hysteroscopy after completing IVF rounds. Annoyingly the NHS said although my lining looked uneven after mc it was fine! I had a lot of heavy watery bleeding on and off for 6 weeks after mc but was told it was normal. My periods are still heavy and watery but improving each month so am hoping I’m healing. The last scan I had before my cancelled cycle I was told my lining looked good (although it wouldn’t have reached full thickness by then as only CD 5). However as the scan wasn’t done by my consultant who has been the only one to notice the problem I’m not sure whether to be optimistic that it’s improving. I also feel why can’t things go right???

@Sophi81 just to say I take GSCF and never have any side effects at all. Also the injections are the least painful of all of my IVF injections. Scary at first but not an issue at all. Shop around for the best price, I found the cheapest was Lloyds pharmacy £325 for 5 injections. Good luck xxx

@StillTrying10000 thank you for your message. It is very scary. I did ring a couple of local pharmacies yesterday and didn't realise how difficult it is to get hold of this. They advised I contact Asda or Superdrug as they have the best price. So I rang Asda and they told me they don't know have it and won't be getting it in stock. I was going to try Superdrug today but will ring Lloyds too on your recommendation.

How often do you have to take the injections? I have been put on the plan by Mr S to take 1 injection 6 days after ovulation and then once pregnant to take 1 injection every 3 days for 12 weeks. I didn't realise it was going to be this expensive 😬

It must be very hard taking all this medication for IVF. I hope it all goes well for you xxx

@Sophi81 Oww you might need to tell them it's called Filgrastim, rather than saying GSCF when you ring places. Might be worth retrying Asda with the new name as they can be cheaper. Not sure if you are in the Epsom area but I get mine regularly from Lloyds pharmacy in Ashstead so they know it well now. The other place it might be worth trying if you are near is Parkside private hospital pharmacy in Wimbledon.
Yes I'm on the same treatment plan as you. Good luck with them xx

@StillTrying10000 I live in Berkshire so I'm not local to Epsom unfortunately. I'm going to pop into Asda tomorrow as they want to see the prescription so I'll see what happens. I enquired at Superdrug, Lloyds and local Asda and the prices all ranged between £295 and £338. They said the price depends on what brand their suppliers can get.

So nervous 😬 I will update you tomorrow xx

Sorry I've not been back. Thank you for all your support ❤️ I don't know if it's psychosomatic, but I've had pelvic pain and general af type cramps since the scan. But I'm not due on for about 10 days. I've got a provisional date at the end of April, they said they just need to confirm the anesthetist. But I have zero details.

@InvisibleDreamer I'm so sorry you're going through similar. It's so shit. I think I'm just in shock. How bloody unlucky can I get, I've had one d&c and this is what happens. I only chose it as I couldn't face miscarrying at home like I'd done for my others. Do you know who you'll have to do the hysteroscopy for you?
I've also contacted PALS and they said I'll hear back next week. Not sure what I'm hoping for really, I'm struggling to articulate my feelings about everything.

@Sophi81 good luck tomorrow. Thank you @StillTrying10000 for explaining where to get the gcsf. I don't need to worry about it for a while, but good to know where to try and what to ask for! It comes to something when you think 'oh £65 an injection isn't too bad actually!' 🤔 😂

I'm sorry you're having such an awful time @89Hope I'm sad that the clinic haven't been supportive.

How are you @myrainbowjourney? ❤️

Sending so much love to everyone. We're going some really tough and awful experiences, so glad we have this space xxx

@89Hope oh gosh I'm so sorry you are having to deal with that cost on top of everything else! How are you doing?

Thanks for the info about the ivf pricing. It's so difficult to try and get an idea of cost with any of this because it seems there's always something else.

I think it's really bad that you had to wait so long for a reply to your email. I do wonder why it's so hard getting hold of them sometimes, and I've never had to wait that long!

@taffeta00 sorry you've had a down week too. How are you doing today?

@Tgrf55 you don't have to track ovulation on super ov as they tell you when to trigger and when to have sex. I have a couple of times because I was worried I'd ovulate sooner than the trigger and I didn't want to miss it.

In terms of the worries about the meds, I think I said before that I was so worried before I started. But I haven't really had any yet. And every appointment they ask how I'm getting on with them, so I assume they wouldn't let you carry on if the side effects were unbearable for you. I think they'd try and find an alternative if they could. I know it's overwhelming but I think just try not to think of the what ifs. They might not happen, you might be fine on the meds. If you're not, you can cross that bridge at the time, and it's all only temporary, and for a greater cause 🥰.

@Sophi81 how was your scan?

@InvisibleDreamer sorry you're having the possibly scarring issues. It really does feel like one thing after another sometimes.

@StillTrying10000 how are you doing?

@VenusStarr sorry you've been uncomfortable since your scan. How are you feeling otherwise?
I think it's good to get your feelings out somehow. It doesn't matter so much about the outcome, but those feelings need to go somewhere.

I'm alright thank you. I had some level of hope after some very faint spotting at about 8dpo. Also thought I saw a super faint line this morning, but I've had some spotting again this afternoon, which feels a day or two early for AF, but seems my luck is out again. I then wonder if I'm getting ovulation right, but we do cover bases anyway so it can't be too far wrong. I am just at the dip of the rollercoaster again, feeling hopeless.

I'm potentially booking a work trip to the states in May and I then think should I say no, just in case, but I feel like too much of life is on hold.

Ugh, I'd rather be in the TWW when you at least have some hope xxx

@VenusStarr awwww thank you. Thinking of you.

@myrainbowjourney The scan went well thank you. I was told I have responded well to the Letrozole and they want me to trigger in 4 days. They said the same thing last month but it didn't work so I'm hoping it works this time. Fingers crossed 🤞🏼

Hi ladies,
@VenusStarr is that date for a procedure for the scarring?? Hope you’re feeling ok.
I’ve been questioning everything this week. If most of us on here are struggling with the prog then I’d their 80 % success stay actually correct? Has anyone asked for evidence? I’m starting to think it’s a huge scam and those who get preg with the clinic would’ve done anyway. Also now worrying the drugs are being detrimental otherwise why would so many of us not be responding??
I’ve done 5 rounds and each time they’ve said it was a great response, thick lining, 2-3 follicles. Other people on here have had similar responses and no good result either.
I was extremely positive 6 months ago but my rational brain says where is the evidence this is actually helping?? Anyone else struggling to see it works??
Huge hugs xx

@myrainbowjourney I totally understand how you feel. I would book the trip. I kind of think if we stop putting things on hold then something might happen. I’m just about to come on too, cramping and feeling awful and really nervous about starting all the injections next week. I hope you can have a relaxing weekend. Hugs x