Immune/NK cells pred thread #31

@Deerdancer34 yes it’s a strange drug. I just found it really wiped my energy for about 10 days. So I would recommend resting as much as possible. It will come back!
I did indeed wait the full 3 months when it came to ttc, I’ve been doing ivf so I felt like I needed to really get back to full health before starting another round.

@Ems123456789 Yes on the Methotrexate and it really does wipe you out! But I'm just pleased I'm not in too much pain, I was expecting it to be really awful but I must have just been reading bad stories.... 45mins!? Goodness, it's not long enough to make such an important decision really is it!? Especially when you're in shock from being told its an ectopic. You must have been so relieved when it was all over. I'm so impatient to know how long it'll take to get back to normal and to get started trying again...did you wait the full 3 months?

@Trgf55 Thank you so much your story, its exactly what I need right now, that feeling of hope! Got to keep believing it will happen! And it's really reassuring to hear about your experience with letrozole.

Thank you ladies 💗

Hi all

I haven't posted on here for a while but just had a very quick scan and wanted to give some hope regarding ectopic pregnancies. @Deerdancer34 i had an ectopic pregnancy earlyl ast year, 8 weeks after a missed miscarraige. I unfortunately did have to have surgery to have my tube removed and i was so terrified it would affect my fertility. If it hadnt of been for super ovulation at the clinic i wouldn't have fallen pregnant as i was only ovulating on my tubeless side but the letrozole stimulated my ovary with my remaining tube. Please dont lose hope, ectopic pregnancies are traumatic and awful but there can be good outcomes afterwards. Take care of yourself and focus on recovering, it's a big thing.

Also for those of you questioning the letrozole doses, the month i fell pregnant Dr S upped my dosage to 10mg. I had 4 dominant follicles and one of them ended up being my little boy :-) i was also worried it was too high a dose but it worked out for me.

Sending love to all of you going through this journey. It never gets easier and it really does show how strong we all are to persevere. ❤️

@Deerdancer34 i am so sorry to hear about your ectopic, did you take methotrexate? I hope you are home and recovering now.

I had an ectopic last year and exactly like you wanted to (and did) keep my tube but it was such a rollercoaster. I was told my ivf cycle had failed, then found out I was pregnant, but my HCG plateaued and they said I’d miscarry, never happened and kept having positive tests, ivf clinic said it was just taken a while to leave but I felt really sick. 4 scans later in EPU and me demanding that I just didn’t feel right and they finally found the ectopic and I was given 45 mins and a walk round the car park to decide if I wanted to go straight into theatre or have the methotrexate. The whole process took about 5 weeks and it was such a mess!

sending my thoughts to you! Take it easy as methotrexate can really wipe you out 💖

Well I've had one of the most traumatic weeks of my life really... EPU Monday confirmed an ectopic pregnancy, at that point I was hopeful I could miscarry naturally because my hcg had come down on last blood test. They rang me Tues morning saying hcg had gone up and they want me to come in to hospital to operate. It was the most surreal experience as I've never actually had to go to hospital on a ward before so it was all quite a lot to get my head around. 3 consultants told me an operation to remove tube with ectopic in it would be best, I emailed CRP and Dr Edge said I should take drug first. Never been so confused in my life and had to make a decision quickly, quite a huge decision to make when I was shocked by it being an ectopic, being in hospital & possibly facing surgery - it all happened so fast. The NHS staff were fabulous though. I was about to be taken for surgery but they knew I wasn't sure, so doc spoke to me again and then emergency after emergency meant I had to stay in overnight. I woke up with cold feet and although doc said removing a tube wouldn't affect my fertility, it felt wrong to remove it when I have no children & this would be my 4th loss and Dr Edge said it would affect fertility. Anyway I finally opted for the drug, so hoping my tube won't rupture now. Felt wrong to go against medical advice but so pleased I've come home complete...I'd rather my other miscarriages over this. The emotional roller-coaster of being pregnant & getting past the time I normally miscarry to having PUL, to it being an ectopic, to being in hospital about to have surgery....exhausted. Sorry for my long post which isn't relevant to CRP but I found it quite traumatising & it helps to off-load a bit, a lot to process still....

@star2022 @HopefulH @VenusStarr This had been my 3rd Superovulation cycle. 1st cycle I had 3 follicles, last 2 cycles, 1 large dominant follicle. I am a bit concerned that this big follicle is reason for ectopic but maybe just really bad luck. I'm going to be nervous when I get started up again....Its so hard working out cycles & when to go for scan. I went from ovulating on CD17 to CD13 on letrozole, so really my scan needed to be far earlier. No idea what my cycles will be like now with all this, will have to work it all out again. Annoying SO doesn't always work how it should... I am worried hearing that increasing the dosage doesn't necessarily help....what can we do though, they are the experts, they should know but I suppose they can't predict how each body will react. Wish it was simple....

Lots of love to you all and sorry for my big ramble!

Hey all, sorry I have been quiet, work has been busy and not much to report my end! I have my first intralipid infusion next week and then will track ovulation and start the pred (15mg, which he decreased from 25mg so hopefully side effects aren’t too bad but it still works!). Not sure if I already updated you all but DP got his sperm frag results back and was normal, so the problem is totally me! But I guess I should be glad we don’t also have issues on his end.

Dr S tried to put me on the superovulation plan as I ovulate really late (last month CD29) but I said no (for now) because we’ve conceived 4 times and never during the 3 letrozole cycles we did previously at the Evewell. And it’s super expensive and I think the trigger forces me to ovulate before my egg is at peak size to be released naturally (which I worked out happens when it’s bigger than when they make me trigger). I also find it interesting reading comments here because at the Evewell, they refused to give me more than 2.5mg letrozole for fears of hyper stimulation, but Dr S seems to give really high dosages and aim for multiple follicles.

@HopefulH i can totally see why you want a break. Seems similar to me in that your pregnancies have been natural or on a low dose. Maybe worth trying without and saving some money for a month, especially if you’re on holiday? Might be nice psychologically too not to have the commitment and travel?

@VenusStarr well done on sorting your mortgage, I hope your interest rates are not too awful (we will have to do the same in a few months and dreading it). Have you tried this month? I hope your DH is doing well too.

Lots of love ❤️

@VenusStarr yes they've put me on 150iu Gonal-f per day next cycle plus 5mg Letrozole... I'm not feeling great about it all. I'll also be on progynova.

I responded better on 7.5mg letrozole so I'm confused why things have escalated to be honest. I think I'll email the nurses and ask what the idea is. I'm worried that this aggressive approach is just getting lower quality eggs and isn't suiting my body. I don't seem to be doing anything myself anymore like my hormones are so messed up.

I'm triggering this morning but my LH tests have been so low still so my body clearly hasn't started to ramp up to ovulate what is supposed to be a ready follicle in there! Feeling very disillusioned with CRP to be honest and the SO crap. I feel it's taken away my ability to ovulate on my own and I'm not getting pregnant doing it their way either. Dr S is not very easy to talk to either so when I'm in there I always feel like everything he's suggesting is fine - and then I come away with a load of doubts and questions I won't get answers for.

How did you get on on Gonal-f? Did you get more follicles/better response?

It's so expensive I'm just not sure how I feel about going down that route. I know they are trying to find the perfect combo to get 2-3 follicles plus a good lining - but I don't think my body is going to do this consistently because I have such low AMH and AFC. But - all of my pregnancies previously have been natural or my last one was on 2.5mg Letrozole when I actually produced the most follicles to date.

Sorry I'm rambling. I didn't sleep well last night and have woken up in a bit of a state about it all. I just want my body to work again! But I really do think my gut is telling me all these meds are not for me. But going against what CRP want me to do is scary...

I'm not sure what to do next cycle as I'll also be on holiday. I suggested a break to Dr S and he said this wasn't a good idea as the statistics on success is based on consecutive cycles... still - I'm tempted to do low dose Letrozole and see if I ovulate naturally the old fashioned way and then take the steroids. And just miss the intralipids... anyone done this before?

Sorry again for the ramble x

@VenusStarr It honestly was torture!! I don't monitor my temps (used to) but I felt like the weather didn't help last week as I always woke up feeling hot anyway. I started my letrozole last night, I'm on 5mg so 2 tablets a day. I put forward the idea of doing the strips at home myself to hubby, and he was having none of it 😂 He's always telling me off for wanting to do my own thing rather than follow the protocol so we've stuck to the plan now and have booked in a scan next week. It'll be SO 4 for us, so he's adamant that these next 3 cycles will be important and that we should stick to the plan.

I also thought the same thing about why I didn't ovulate on my own last month!! I had a follicle at 30mm, 24mm and 16mm so I had the trigger the same day. Very unusual though as i never felt any ovulation pains even with trigger which makes me wonder if that's why my period was delayed. Either way, I just feel like these meds are messing up my cycle so much ergh.

When do you start your letrozole? And you're definitely doing SO this month right? 🤞🏼x

Hi all, yep @VenusStarr and @HopefulH AF arrived on saturday a whole 9 days later!!! Can't believe it, at one point dh was even hopeful that we may have been pregnant, but of course its too good to be true isn't it! I'm also super annoyed because I tried booking a scan for next week monday which is my day 9 (I've been told to book a scan 7-9) and obviously can't do the weekend so monday is my only hope - and yep CRP is closed as they are all at harley street. Its just typical, always something in the way. They've told me come in on day 10 instead, but this month when I went on day 10 (as day 9 was closed again!) i had a follicle that was 30mm! So it seemed like it was too late even though they still triggered me. Not sure what to do, whether to go in on tuesday or just do a SO cycle at home without the scan - has anyone done this before? If so, did you still take the letrozole? I'm due to start it tonight..

@HopefulH glad you still have a plan in place, i'm sorry I have no idea about the gonal f but i really do hope that bumps things up for you! x

@Deerdancer34 I have the same concerns as you regarding triggering at the size they do. It seems they have no cut off? How many cycles have you done? I'm on SO 4 now.. such a long process. I'm so sorry for your losses x

Thanks @VenusStarr It’s my first medicated frozen transfer.
I have been on oestrogen, clexane, prednisolone, now progesterone and then I’m going for an intralipid infusion on Wednesday before having my transfer on Friday. It’s a good embryo so I’m really hoping it works but having miscarried a few before it’s such a nerve wracking time. It’s the only frozen one I’ve ever had so if it doesn’t work it’s back to the drawing board.

I saw your comment re sex life. I totally get it! Feel the same. We did actually have a nice holiday in May where sex felt more normal but even then I was still timing it with ovulation. Congrats on the gym routine! It’s good to have something to work on.

Am I right in thinking you are gearing up a super ovulation cycle? I’m not as familiar with this as I’m not under Dr S.

Mixed results for me today at my appointment - only one dominant follicle and I was on 12.5mg letrozole. But at least there was one. Also my lining is very thin.

I'm being out of Gonal-F next cycle. Anyone know how expensive this is to buy? Is it cheaper from other places besides CRP? It says I need 150 units cd 2-7 supply: 1 x 900 units penfill. I have no idea what that all means? Xx

Thank you so much for your replies, it feels reassuring to know others who are going through this at Dr S.
For this loss, It's odd because I've had a little bit of bleeding but with my other losses it just came like a normal period, I just want it to get started and be over with. I'm going to EPU tomorrow at hospital to be checked over & fingers crossed I don't need any medical intervention. Maybe because I got a little further, my levels are coming down slower so its taking longer to miscarry? I have no clue, not experienced this before!
@VenusStarr
I'm so sorry you have to go through all this rubbish too. I honestly thought going to Dr S would be my answer and it would work! Did you have a loss on SO? Does he tell you to wait because I can't bear the thought of being told to wait again. I'll wait until after my miscarriage and then my first period but I don't want to be told to wait several cycles!

Crossing everything for your next SO cycle 💪

@HopefulH How many tablets are 12.5mg of letrozole? They were going to put me on 4 on my next one but I guess I'll have to have another expensive appointment to discuss next steps, when tbh I just want to get on with another SO... My last 2 cycles I only produced 1 large follicle, so it's interesting it doesn't work how it should for everyone... Do you think they should be triggering us when the follicle is too big? I nearly declined the last one but thought they would have said not to do it if they thought it was pointless but maybe they don't!? Dr Edge didn't seem to think it was the follicle size when I said I think that's why this didn't work but I personally feel she was covering herself a bit...
New cycle, new chance, deep breath and I'm praying it goes well for you this cycle 🙏

It's a real relief to be able to talk about all this protocol stuff here because no one understands what I'm going through & I was quite sceptical about all this at the start and whether we were being led up a garden path but it's amazing what you'll go through for something you want! We have got this ladies, you are all more brave than you'll ever know 💗

Hello all, I've been on a break so haven't been on Mumsnet, so sorry if I haven't replied to anyone.

We had a real flop of a cycle last time. It was an SO cycle and my body didn't respond at all which was depressing - so we decided to take the rest of the cycle off as a break. It was amazing to have time off from all the meds and I started to feel like myself again. Really does make me question how long I want to do this for...

I think I posted about my alarming kidney level results but can't remember. This is still ongoing and I'm having more tests this week. It might be I can no longer continue on the protocol anyway if it's damaging my kidneys for whatever reason. I'm also having all my iron levels etc. tested as I think I'm anaemic too.

I'm at CRP tomorrow for another SO appointment - this time with Dr S - which I'm dreading! I'm not convinced my ovaries have done anything this time either. I've been on 12.5mg Letrozole the last two cycles and I'm questioning if this is too much for my body, but CRP assured me it doesn't work like that.

@Deerdancer34 I'm so so sorry for your loss on the protocol (and all your losses). Just sucks so much. I too have had a couple of SO cycles when they have triggered already big follicles and they assured me that if they were not of good quality they more than likely wouldn't fertilise anyway but it still made me very nervous. I'm so sorry this has happened to you. I hope you can gain some comfort from knowing you did everything you could to give this one a chance. How are you managing the loss?

@VenusStarr I really hope you can get a cycle in this month. You have been so patient and resilient with everything that's been thrown at you. Hope your dh is feeling much better now? When you're doing SO do you plan in a lot of DTD? We're on SO cycle 4 now and I must say our enthusiasm for DTD has waned considerably.

@star2022 this is exactly what has happened to me on my last two SO cycles and it makes no sense! My cycles went on to 18/19dpo too and the clinic had no explanation. I thought maybe my body couldn't rid itself of the extra progesterone? Ms Edge said I could try without cyclogest next cycle to see if this makes a difference but she was pretty adamant it wasn't the steroids... I'm not convinced. My last cycle, which was anovulatory, went on for 40 days! Which has never happened in my life before. Before I started at CRP my cycles were pretty clockwork at 27/28 days. Big sigh. I hope your period has now arrived? I think the stress of not understanding why it's late can also make it later, so I'm trying to just chill now and accept I have no f**ing clue what's going on anymore!!

Hoping everyone else is doing okay. Thinking of you all. It's really nuts what we all have to do and put our bodies and hearts through - and whatever the outcome - you are all incredible! X

Oh I am so happy to have found this thread...
3 miscarriages at 5.5 weeks (2020, 2022, 2022) and was recommended to Dr S by SIL.
First went at Christmas, did all the eye wateringly expensive tests + humira injections but felt excited to have a plan, hated being told to wait though...
First 3 cycles - pred + cyclogest + intralipids ... Failed, felt so demoralised. Introduced to Superovulation so felt good to have a plan again but my god its hard to plan when to go for the SO scan, has anyone found that?
SO 1 - failed
SO2 - my cycle completely changed & became shorter and really we should have gone earlier for scan because when we triggered egg it was 25mm...I knew that would fail which it did...I feel they should have told me not to trigger rather than waste the money on the jab and those intralipids...
SO3 - went slightly earlier although nurse said I should go later, egg was 24.2mm and I thought this isn't going to work, it's too big again... We shouldn't have triggered. But...Pregnancy test was negative at 11dpo but no period came and had implantation spot 13dpo - I thought that was ominous (too late basically)... Anyway I started having hope because I got past when I normally miscarry but went to 6week 3 day scan and nothing seen, paid for the hcg tests and another scan to be told its not viable.... All these costs are mounting and I wasn't really expecting to have more losses under specialist care...or for it to take so long!

I'm so annoyed they triggered this cycle because I had just worked out for SO4 when to go for a scan in hope my follicles would be smaller. Instead I'm waiting to miscarry which hasn't happened yet and have to start it all again, waiting and then working out cycles etc. Up to now I've closed my eyes to costs but can't do that forever.

Sorry for my terribly long rant but I've only heard success from Dr S and I just feel my body is failing me & why can't it work for us. However I am determined because its all I really want.

Sending you all lots of love and strength and I hope you don't mind me butting in to this group! Xx

Hi everyone sorry I keep dipping in and out at the moment, still been busy with the house move. Nice to see some newbies in here!

Just a quick update from me, I stopped all my meds at 10dpo last week wednesday as I got a BFN but I still haven't had my period! It's really stressing me, I'm definitely not pregnant as i've been testing (and wasting even more money on these tests 🙄 ) Usually I start within 3-4 days of stopping cyclogest. The only thing I've had is brown discharge only when wiping, not enough to reach my pad from the day I was meant to start my period. It's definitely not implantation as its far too late for that. Just wondering has this happened to anyone else? Is this the letrozole or steroids messing with me? Or could it be a cyst? Or the stress from the house move maybe? Nurses have told me to keep monitoring until next week and keep doing pregnancy tests. Just FYI I am now 19dpo

I just want to get on with my next cycle and this is just adding more stress to an already stressful process!!! Argh why can't things be straightforward?!

@VenusStarr I'm so sorry dh is still not feeling great, and thats really tough to know you've been under Dr S for 3 years 😞 Its really frustrating when other things get in the way of being able to crack on with the cycles as it just prolongs the journey even more doesn't it. I also totally sympathise with you about the kids thing and sister, I have 2 sisters both with kids and all I see is activities out with the kids, it can get super depressing. I just hope your time comes very soon and that you're able to start a cycle in July 🤞 xx

Hi @Privatemedical246 thanks for the update and sorry it’s not what you expected. As you know I was told the same thing which I agree means more weeks/months waiting to start treatment. I have the added hurdle as you will have read of latent TB so I have to wait until end of July only to have a backup plan for the humira. But I’m also telling myself I’d rather get specialist care than have another loss on my own. Just my way of saying I understand how you feel!

Sorry can’t answer the intralipids question as I’m not there yet.

It’s lovely having this community who understand the situation because as you say, it’s very complex!

Hi all, I had my appintment and slight difference in what I expected. I thougut we be able to start trying straight away but Dr S wants me to have idacio/humira first and retest after the 2 injections and see if my levels have gone down. I know its good we have a plan but I can't help feel disappointed that time is going so slowly with all this waiting and we are not even actively trying.

Is eveyone on intralplids every month whilst trying? I'd read on some forums it was from postive test. We will need to weigh up finances versus if we can do that every month. Most of the other drugs I was getting on nhs so will only be some of the private vitamins and then the hydro and predisclone I'd have to purchase alongside infusions so it may be after so many months we have to stop in the infusions and just use my nhs drugs and what we can afford to purchase.

So pleased to have people I can chat to here who understand what the hell I'm talking about as my friends understandably don't really know as it is so complex.

Hi @VenusStarr thanks for this. I know, very surprising and even more that a third of the world’s population probably have this! Appointment now booked with Dr S on 31st July so a long way to go, but he’s away for two weeks in July. Oh well.
Ouch that sounds painful! Hope he’ll feel better real soon. I had a laparoscopy done in 2020 and I remember it took a while to heal as well.

hello @Unicorn25 welcome and congrats on your DS, it’s nice to see positive stories with Dr S. He has suggested Impryl for my husband because of his poor DNA fragmentation.

Hi everyone.

Hope you don't mind me joining here. Was previously a Dr Shehata patient 5 years ago about 4 recurrent miscarriages and had success with a DS. Wanting to start TTCing again and going to try without treatment; but want to be on the vitamins he suggested. I have my previous plan still, but I wondered if he still suggest impryl for the male?

sending luck and love to you all!