Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
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@recurrentmis
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@fleur89
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@kea1990
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Hi @Frasmac im so sorry for all you have been through it absolutely just isn’t fair is it. You are so lucky to have your DS, you really given me hope as I just think I will never happen but it does, especially as I am on the same protocol as my last loss, there are 2 more intensive treatments but hubby does not want me on any stronger drugs which I have to respect.
i hope you are ok and not to down about the intralipids and your tummy is feeling a bit better xxx
i have had a morning to myself, I get terrible migraines, the last pregnancies I have just suffered in bed in pain for days this time I just can’t do that so after discussing with my dr they’ve said I can have paracetamol and codeine and it is helping with my headaches so I am feeling very grateful for that. xxx

Hi ladies, just checking in. I have a terrible cold which will doubtless take an age to get over, being in the steroids. I have at least 8 days to go before I can start this months testing so I daren't come off the pred to improve my immune system yet.

@Objectiontime oh no you poor thing there’s nothing worse than a cold are you just resting up today? At least you shouldn’t get a nasty cough with the cold as don’t steroids help suppress a cough ( I may be wrong)
ladies have any of you been on 25mg of steroids or has every one been on 20? I’m sure dr shehata had some people on 25mg and I’m wondering if I should ask to go on 25mg. If anyone knows anything about it I’d be very grateful for any info xxx

Thank you @Gizmo1983. Ooh, I hope you are right about the cough. I am feeling very slightly better today so hopeful for a decent but possibly slow recovery,
I am actually on 25mg steroids from ovulation. I'm not with Dr S though. Not too sure whether I am in that dose from ovulation because of my allergy to intralipid ingredient and not being able to have those
How are you today ? X

@Objectiontime hey sweet, so glad you are feeling a little better, have u got the bank holiday off so you can have an extra days chill?
im ok thanks had a bad mental health morning, i think seeing the scan made it feel real and i just can’t see why this one will make it when the others didn’t iykwim. Got out the house and just sat at the beach watching the world go by it was lovely and warm. I’m having bad headaches so having to take paracetamol/codeine for these but the dr is ok with it. Think I may try and go to 25mg can’t see how it will do any harm. I think I’m panicking as I’m on the same protocal as last time and it didn’t work, I wonder if anyone has done the same protocol it’s worked? I am just going to try and keep busy. Still no sickness slightly sore nipples if I really tweak them 🤦‍♀️🤦‍♀️🤦‍♀️

@Gizmo1983 I am off so I will at least get some down time 😁. Completely understand re actually seeing things happening. I think, after losses we come to believe things wont work out. Its almost like a mental safety net. Better to assume the worst because thinking positive and then being let down again is torturous. I am 1000% with you. Annoying re the headaches. That is due to your high fluctuating hormones I suspect. I dont think the 2mg of pred should be an issue. I am no expert but it would make sense, particularly if you are a non intralipid person like me.

Try not to worry about the sickness, the pred will almost certainly mask it. Made me laugh about your nipples. The things we do!
Keeping you in my thoughts Gizmo x

@Objectiontime thank you so much for what you just wrote it’s honestly just made me feel so much better and calmer 🥰. I read something the other day in that the future of the pregnancy will pretty much already be determined anyway we just have the agonising wait to find out what that is. Definitely a mental safety net.
oh I know with the nipples I need to stop lol and I still can’t look mummy pig in the face, I got my husband to put my mummy pig mug in the cupboard I can’t reach or see when she announced she was pregnant and she is staying there for the foreseeable future. I just can’t look at her smug face 😂😂😂

@Gizmo1983 hope you're okay - definitely been there too with the thoughts and the nipples!! 😂honestly PAL is so so hard. We're all rooting for you. My protocol is 25mg Pred.

@Frasmac you have had such a difficult journey, I'm so sorry but also how amazing to have your DS. Not that it negates any of the losses at all. You are a true warrior.

@Jecca88 how was it being back at the clinic? Hope it went ok xxx

@Objectiontime hope you're feeling better, the steroids don't help really do they (with colds I mean) xx

I'm 13DPO and negative AF today so looks like its full steam ahead with starting stims next week... I'm currently doing 3 x cyclogest a day to try and keep CD1 at bay, 0/10 do not recommend.! It seems to be working though (fingers crossed). My injection teach appointment is on Wednesday, I'm nervous!

Hi all just joining this thread now! Got pregnant last month under ny new immune protocol prednisolone/progesterone.. stayed on it for 4 weeks as I miscarried very early on. Now as well as being depressed by the loss I am also depressed because since I have been weening off prednisolone I have been putting on weight everyday!!! I didn’t while I was on it (it was quite the opposite I could eat whatever I want and still losing weight) and now I am done with it my face is all puffy and I have put on an extra 2kg in 1 week! Anybody had this after stopping the medication? I had lots of losses under progesterone only and never had that before! Thank you!!!

@Hopeandfaith1990 thank you so much ☺️ I need to hear all this right now, I just need to keep my mind busy as I can, sounds like being on 25mg is quite common so I may try to go up.
sorry about the negative but on the bright side it means you are so close to getting started, once you’ve started I honestly thought the whole thing just went so quick, which I was happy about x don’t stress too much about the injections, at first it’s like oh am I doing it all correct and me and hubby did them together by the end u just bung them in there lol x
hey @CarpeDiem75 im so sorry for your loss, my last loss was on a new immune protocal I was so sure would work and then it didn’t and it was just awful I’m so so sorry. I’ve had this when coming off all pred never been that hungry when on it but when I come off it I balloon which is just even more depressing. Just be easy on yourself you and your body have been through so much. We are always here if you need to vent xxx

Hello @Hopeandfaith1990, I am feeling much better today, thank you. First cycle on pred I felt fab, next one I got thrush at both ends! Third time I was completely exhausted and this time a cold. I look forward to seeing what the next lot brings (assuming a negative HCG test when I do it next weekend because its safer psychologically to do so). I am hoping, as we all are on here that there comes a point where I can just continue the pred and then taper because lady luck has finally joined me.

I have cyclogest to take from a positive test but not sure whetheri will take it. I dont have a diagnosed progesterone issue and I believe pred increases progesterone when present. Also, last time I had my progesterone checked it was way, way higher than normal so they are checking that.
Wishing you the absolute best of luck with your cycle and hooe your stims go okay.

Hello CaroeDiem75, I would say its lovely to see you here but if course none of us really want to be here so I will just say welcome. I know we have conversed on other threads. I know this might sound bloody rude so forgive me but do you think you are eating more because you are feeling low? Just a thought. I am generally quite a big size. My BMI is constantly between 30 and 34 and with me it is just the way I am. Tried every type of diet to no avail.
You may find that your whole system adjusts within a couple of weeks of stopping the pred and your body returns to normal.
This process is such a trial! X

@Objectiontime i stopped taking the cyclogest after I’d ovulated and figured I’d take it if I got a positive test. The deal I made with myself was I’d test from day 9 so I’d know to take it asap

@Gizmo1983thanks! Good to know it is not just me! Did your body get back to normal? How long did it take for you?

@Objectiontime yes it me indeed 😄thanks it gives me hope I will get back to normal!I don’t really eat that much more so that’s why I couldn’t understand what was happening to me but to be faire I found that this was the earliest miscarriage out of all the losses I had but I did find that I suffer of side effects a bit longer as I stayed on the med until 1 week after I miscarried so my body really struggle to understand what was going on!!! I had horrible night sweats for 2 weeks but I am now feeling better with this. So hard to be a woman! We have to endure the loss but also all the side effects 😭

Ah may well be your body settling back after tge meds and the weight gain will hopefully be temporary for you until it is out of your system.
I cant remember whether you take the pred from ovulation?
I dont have hydroxi (yet). My total NK cell count was 256 so high but not as high as some, not sure if this is why x

@Objectiontimeyes I take the pred from ovulation for 10 days only (but stayed longer as I found out I was pregnant) so I am not starting again this cycle will try maybe next cycle.
I stull don’t get what hydroxy works on and what pred works on!! My total NK cell count is 280 and I have an activation marker of 1.81. Hence both medicine. Hydroxy seems ok this time around I do have quite a few headaches from it but I am sure it will go away after a week or 2! What reason did the doctor give you when they gave you the prednisolone?

@CarpeDiem75 I'm not sure either about the hydroxi and the pred. I will see if I can find out. I love a bit of research.
I got the pred because when I had my immune tests the one that gave me the best results was IVIG which, like many others, I cant afford and isnt available on the NHS. The pred and intralipids together gave roughly the same result so that is what i went for. Then of course I found I was allergic to at least one of the ingredients in the intralipids so I am just on the pred.
My total count is 251 and activation marker 1.01 but I am even more worried about my TNF alpha il10 because that is up at 39 which is way higher than normal and I think if I was with Shehata he may well have me on humira for it. My consultant hasnt mentioned so I am just not sure. I cant find any research to suggest the the pred will help the tnf alpha as well as the NK cells. It may be that I have not dug deep enough yet but I am wondering why some ladies are on humira. If it is for lowering the tnf maybe I need it too. Very scary!

@Objectiontime holy macaroni just seen the price of ivig that’s insane and you would need about 3 yikes. If it was guaranteed to work then maybe but imagine blowing all that and it not working. I think that’s what damaged me so much with CRP paying all that and getting nothing in return ( not their fault ). We had paid 10k for ivf then 13k at CRP just for heartache and it really has damaged me I think. Mind if it had worked I wouldn’t have cared less how much it cost.
update on me, nothing much which is good I suppose, got slightly sore nipples no nausea still which freaks me out a lot I won’t lie. Does anyone know when a scan should pickup
up a heartbeat if there is one don’t think
incan wait till 8 weeks is just rather know xxx

Thank you @Objectiontime ! I've not had low porgesterone diagnosed either, but I think most prescribe it as it doesn't 'hurt' and it could help, I guess?!

weirdly @CarpeDiem75 I found I put on weight ON the pred. Recurrent MC doctor even warned me about it eye roll and told me to keep an eye on my BMI.

@Gizmo1983 The cost is astronomical isn't it, another thing that seems so unfair in this horrid world of recurrent pregnancy loss. Obviously a baby is priceless but it takes some very difficult decisions with treatment sometimes doesn't it. I think the earliest a TV scan can see a heartbeat is 6 weeks - however I think most say maybe 7 weeks so you don't accidentally go too early and not see it but its just too early (if that makes any sense). Glad you're feeling okay but also empathise with wanting to feel awful so you have symptoms ha xxxx

@Gizmo1983if it helps, when I had my son and early on with my daughter I didn't really have any symptoms! I was never queasy, never had cravings...just felt exhausted. @Hopeandfaith1990is right that if you can wait until 7 weeks then it will give you some buffer for dates. The waiting is awful. Time feels like its dragging. What I find helpful is thinking the phrase "today I am pregnant" and focus on one step/thing at a time. Otherwise it can be overwhelming!

Yes, the IVIG is ridiculously expensive and my issue is that I would have to have one every month before I even knew if I had conceived. Since I am around 6 months now since I originally got my results that would likely be around 12k for nothing. As you say, if I knew it would work and I could have it from a confirmed pregnancy I would definitely find tge money from somewhere and do it, but! I get what you mean about the amount of money spent. It is just so totally unfair and the whole thing just eats into the brain and makes one so angry.
So glad you are still good. Still the pred blocking the nausea I reckon. I believe it has been given to women to treat bad morning sickness, not sure if that is ever still the case. Equally, I know someone with three children, including a set of twins. She had no sickness whatsoever with the twins and only mild with the singleton so all very odd.
I agree with others. I would absolutely not go for a scan before 8 weeks unless I was completely certain of my dates and just couldn't wait. A lot happens in embryonic development, I believe, between 6 and 8 weeks so it makes sense to go at that point. Just my thoughts. X

@Hopeandfaith1990 @Objectiontime @Frasmac hi guys thanks so much my official scan off the dr is 8 weeks I just don’t know if I can wait that long I may book one for 7 weeks, I just need to know seems daft I can’t wait the extra 7 days but not sure I can 😬😬😬.
crikey I was reading a fb post where a lady had those ivig once every 3 weeks to 20 weeks that’s insane crikey, mind you my friends sister lives in America has needed ivf and it’s a fortune I wonder with all that extra expense they have any better success rates.
thanks so much for all the reassurance on the nausea I really do appreciate it very very much.
xxx
@Hopeandfaith1990 any idea when you will be starting your stims it must be close now x

@Gizmo1983 stims starting on Friday!! It feels quite real now. I had a much better appointment and injection teach today (no crying 😂) and I feel more positive about this than I have in a while! Stims start on Friday then I’m in for scans every Mon/Weds/Fri until egg collection. Crazy!

I feel like at the moment I’m looking at it in terms of treatment rather than a means to a baby if that makes sense - can’t quite get my hopes up enough yet to think it’ll result in a live baby, which seems mad, as it’s the whole point but I guess that’s what recurrent loss does to you. At the moment I’m just thinking in terms of follow the plan, takes the meds, turn up to the appointment and see what happens. How are you doing? Xx

@Hopeandfaith1990 hey sweet so glad your appointment went loads better today it will put you in a much better place for starting all this. Just go step by step I honestly found it loads easier than trying for a baby if I’m totally honest it was almost a relief and I felt once they had what they needed the rest was up to them not me lol. Eat lots of protein and drink plenty.
i was exactly the same I kept it in my head as a treatment I don’t think it felt like anything else till they put an embryo in.
im ok thanks absolutely nothing to report which I suppose is good news going crazy in my head every day feels like a million hours you know the feeling I need to be a brave girl and book this scan. I think I’d rather know either way x