Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

Hi all, hope everyone is okay ❤️

Does anyone know if I can get a prescription from Dr S and go to a pharmacy instead of getting the medication directly from him?

I am currently taking cyclones, pred, omeprazole and HCQ.

Thanks 🙏 😊

Hi @comingsoon786110 yes I think you can. Although I think they charge £20 per item x

@VenusStarr is it £20 per box of items you need? I feel like he overcharges quite a bit.

I just had a follow up consultation with Dr Raj Rai and he said that one of my blood tests show some sort of blood clotting issue so I should start trying again and then as soon as I am pregnant he will be prescribing me with heparin injections. He dismissed any other treatment and told me steroids were very dangerous and wouldn't work. Wasn't a very reassuring phone call and I'm not sure whether I should take the injections because of my Dr S protocol and I am already taking aspirin 😩😩 that phone call just left me even more confused than I was before 😳😳

Hi @comingsoon786110 I'm sorry your appointment has added more worries. Could you send the blood results through to Dr S. He may add fragmin to your plan? I think blood thinning injections work differently to aspirin (not entirely sure why or how though), so think it's fine to be on both. When I do ivf, I have fragmin and aspirin as well but only aspirin in ttc.

I think its £20 per item... its mixed though, I recently had antibiotics through them and didn't pay the charge but I had to get a printed prescription for gonal f and did have to pay.

@comingsoon786110 It’s so difficult to know what to do when even the experts disagree! My clinic disagrees with the steroid dose I was suggested by Dr Gorgy so I have compromised by taking 15mg rather than the 25mg suggested by Dr G. I’ve already had a cold for about 3 weeks that I can’t get rid of and I never get anything! I hope this means the dose is working 🤞Blood thinners and aspirin work differently so you can take both. I’m taking a low dose of clexane and 75mg aspirin. I would think if you have a blood clotting issue this is more important than steroids. Hopefully it’s the answer you have been looking for.

@VenusStarr thank you! I have requested a prescription this time so will see what works out cheaper. Due to go in for my intralipids tomorrow.

@InvisibleDreamer it really is so confusing!! The problem is St Mary's won't give me my results and have just put it all in a report. When I had my tests done in October 22 this didn't come up with Dr S but he advised me to start on aspirin. I had my St Mary's tests done at the end of November and this came up so I'm so confused how this could have happened? I'm thinking maybe Dr S didn't test me for this like i thought he did? Apparently I have 'low fibrinolytic parameters' whatever this means!

@comingsoon786110 that sounds like something different to the usual blood clotting tests so it may not have been something Dr S was looking for. Will they not send you a copy of the report? Or dose that not contain your actual results?

Thank you @InvisibleDreamer and @VenusStarr ❤.
You're so right @InvisibleDreamer, it's such an anxious time. I had a major wobble yesterday but all is well now, my intralipids went well today and my clinic have been great about bringing forward my scan to next week. I hope your 2ww is going well x

@comingsoon786110 I hope you get your private prescription sorted. My clinic charges £55 per prescription regardless of the number of items on it. I saved around £800 on my IVF meds through The Fertility Medication Centre. More recently, I've been getting my FET meds through Asda - they charge less than half what my clinic (and Stork) charges for Lubion! Also, you're entitled to copies of your test results under GDPR legislation. I requested and obtained a complete set of my clinic medical records, including all test results, when I needed these for another Consultant. Hope you're able to get the results, so you can send them to Dr S, obtain his advice and get some clarity. All the best with everything x

@InvisibleDreamer yes this is what I'm thinking so I might go ahead and give the heparin injections a go!

@Faithhopelove83 i have heard supermarket pharmacies are cheaper so that's why they've got my prescription ready to be collected today and I will get it from Asda or something! I have requested it from them and they said apparently only my GO can request results and then I have to get them from my GP but that was a waste of time because my GP didn't even end up getting back to me.

It's just so stressful thinking I have to add another medication to the mix but let's see.

Hope everyone else is well and looking forward to the long weekend ❤️👋

Hi everyone hope you're getting on okay!

@VenusStarr that's great to hear you're starting SO again! How exciting! The only thing I did or have been more mindful of is having more protein and making sure I include protein with every meal - don't know if this has been helping me but my follicles seem to grow well and lining too. Sending you well wishes for this cycle! x

I had my scan for SO 2 this week and as expected, the polyp was still there so we made the decision to abort this cycle and get the hysteroscopy done. Super frustrating though, as we saw 2 perfect follicles on the scan, lining was perfect too and we can't even try naturally either if we are to go ahead with the hysteroscopy. I'm currently waiting to see if the nhs will accept my GP's urgent referral and if so, we can get it done in the next few weeks, or if they reject it, I will go ahead with crp and get it done next week.

@comingsoon786110 have you approached your GP to see if they will prescribe you anything? I don't know if I've just been lucky, but I've managed to get my letrozole, HCQ, Pred, cyclogest all prescribed from my gp and I got them to max out my quantities too so I only pay 1 prescription charge per item. Might be worth asking in case they can! I haven't told my clinic though as i'm sure my gp isn't supposed to be doing this lol 🤫

Ah sorry to hear the polyp was still there @star2022 and how frustrating that everything else was perfect. I hope the NHS accepts your GP referral and you can be seen quickly. Let us know how you get on x

Hey @star2022 I'm sorry the polyp is still there and that you have to pause. I hope you can get it removed ASAP. Good that your GP will prescribe your meds too, I tried but mine won't. They wouldn't even give me progesterone in my last pregnancy 😒

Thanks for the best wishes, I'm really not sure it'll work, it's been such a long time since I had a pregnancy, a natural one was even longer. Got my scan on Tuesday. Hoping that my lining is OK as I've had issues before and hoping for at least one follicle 🙏 I'm day 6 today and definitely feel like somethings going on. We'll see. I'm delaying starting estrogen, my plan says from day 3 but I'm going to start on day 8 I think. Last time I think it showed things down early on.

Hope everyone is ok xx

Hi All, Tested early 10dp 5dt and it’s actually a BFP really thought it had failed shit scared but so so glad to at least be in with a chance. Breaks my heart knowing I have to do this without Milo I don’t know how I’m going to cope being on my own with the hyperemisis when OH is away working so may be moving in with parents head is just spinning now 😱 I will try not to post too much cause I know how rubbish it is when you are waiting for that BFP but may need some hand holding when it comes to scans.

Gentle congratulations @InvisibleDreamer its lovely news ❤️ try not to overthink things and take each day at a time. Today you're pregnant 🥰

Has anyone ovulated before their scan when doing superovulation? My scan is Tuesday, cd11. Due to having issues the last 2 times I did it and needing 2 scans I was worried about being too early, plus easter kind of dictated it anyway. But I usually ovulate on cd10 and my heartrate has gone up today. I'm doing my temps as well and it dropped today. I'm doing lh tests as well. There's nothing I can do and I'm probably overthinking and will find out I've not even responded to the letrozole 🙃 just wondering if anyone can relate?

Congratulations @InvisibleDreamer , that's wonderful news! So pleased for you. Like you say, you're in with a chance. I totally understand what a scary time it is though, especially if you've had previous losses. I'm sorry, I don't know your background, but it sounds like you've had hyperemisis before? I'm more than happy to hold your hand through this next bit. Needing a hand hold myself!

So I'm 6 weeks today and I've had lots of reassuring symptoms since my wobble at 5 weeks, so I've been doing well this last week. But yesterday most of my symptoms disappeared, I just don't feel pregnant anymore and last night I had a night sweat. So I've convinced myself it's over and now it's an agonising wait until my scan on Wed. I so hope I'm wrong.

Ah I'm sorry you're worried about ovulating early @VenusStarr . It's so frustrating when timings don't go the way you want. I was on Letrozole during my IUI cycles back in 2020/2021. It's difficult for me to remember back. I normally ovulate CD13 and I'm pretty sure the Letrozole brought this forward and they scanned me too late to begin with. I also remember ovulating over a weekend on one occasion and so the cycle was cancelled. Im sorry I'm of no help. Is the plan to trigger once you get LH surge and then you try naturally? Ovulation tests can be so frustrating too, trying to catch it. I remember testing one morning and it was negative, tested 2 hours later and it was positive (with CB digital). I really hope everything lines up for you x

Thank you @Faithhopelove83 both times I did letrozole before I needed 2 scans. First I did day 9 and lining was 4mm and so I was put on estrogen and went back and had 3 follicles on and triggered on day 14. The next one I started estrogen earlier and I had a really slow response on day 11, no dominant follicle, nothing over 9mm. I decided to pause estrogen then got 1 follicle to 13mm, ended up triggering on day 20. Very faint line on test day but think it was trigger.
We're doing timed sex with trigger but we've been having sex every other day anyway as dh's sperm dna frag was 16%. So hopefully if I do ovulate early we're covered.

I'm sorry you're feeling like this. I know prednisolone can mask symptoms and it is normal to have symptoms come and go. These early days are awful. Take each day as it comes. You're doing everything that is within your control ❤️❤️ xxx

Thank you @VenusStarr ❤. I know symptoms can come and go, but I didn't realise pred can mask symptoms - that's interesting to know, thank you. I am going to try to be positive because otherwise the next few days are going to be even harder.
That's good you've got everything covered. It's bizarre how responses can be so different from one cycle to the next. I hope all goes well with your scan on Tuesday xxx

@Faithhopelove83 pred completley masked symptoms for me and it caused a lot of anxiety! I had no symptoms at all really other than sore boobs and that would come and go. I ended up seeing Dr Edge for an emergency appt in tears because i was so anxious that I'd had another missed miscarraige due to the lack of symptoms. Try not to worry but i know its hard.

Sending love to everyone. Good luck @VenusStarr for your ovu scan xxx

Thank you for reaching out @Trgf55 ❤, that's really reassuring and encouraging. Do you mind me asking what stage you are at now? - I do hope things progressed well for you xx

Sorry @Trgf55 , I've just looked back and remembered you had your beautiful baby boy last month 💙. I keep getting everyone mixed up at the moment. Hope you're both keeping well xx

Panic over, my temp and heartrate dropped today, lh test looks marginally darker today, so hoping the scan timing is spot on 🙏 now just the worry if there's any follicles and how my lining is... 🙃😬

Hope you're doing ok today @Faithhopelove83 thank you @Tgrf55 hope you and little one are well xx

@Faithhopelove83 I actually asked this question on here aswell & @Tgrf55 reassured me. One of my friends is now on the same protocol and was worried about lack of symptoms. She’s had a few scans since then & all going well.

I really don’t think I ever had any major symptoms. They were maybe kind of fleeting symptoms. My boobs were only sore initially aswell then they stopped & have never been sore since. I’m now 34+1

Thank you @VenusStarr , doing much better thanks. Symptoms returned with a vengeance today. I just hope my body isn't playing tricks on me. So glad things are now looking good timing wise for you and I hope your scan goes well tomorrow. Will be thinking of you x

Thank you @LuckyNo14 , that's really reassuring. Congratulations on your pregnancy - not long to go now! I hope you are keeping well. There are so many success stories on this thread, it's very encouraging. Wishing you all the very best with the rest of your pregnancy and welcoming your little one x

Thinking of you @InvisibleDreamer , hope you're doing ok x

Hope everyone else is well too x

@VenusStarr 🤞for your cycle
@Faithhopelove83 also waiting on tenter hooks for symptoms days seem to pass very slowly!