TTC journey - hydroxychloroquine

Does anyone know if it matters how long you take hydroxy for pre transfer? I know it takes around 3 months for full affect but because of down regulation I ended up taking it for around 8 months before transfer and I think the transfer may of failed. Is there a case of being on it for “too long” or not? I repeated the exact same protocol as last time which implanted but lost at 10 weeks. But this time with added hydroxy and 40mg clexane rather than 20mg. Everything else remained the same.

thanks.

@Ratatattat1 I never check my pms as I have to log on separately as the app doesn't allow me to access them 🤦‍♀️

@Ratatattat1 I've just whatsapped you!

@bunnykins123 sorry did you receive msg with number ?? X

Done x

@bunnykins123 tried and said username isn’t valid ? Not sure Im
doing it right as new to this ? Can you pm me x

@Ratatattat1 sure! If you PM me you're number I'll send you a WhatsApp message x

Maybe wataspp or Facebook?? What’s your name n I’ll search for you ? X

@Ratatattat1 I'm struggling to attach them but I'll try again tomorrow! Sure where are you thinking? It's good to have someone going through the same thing as me and on the same protocol. I do sometimes wonder why I wasn't prescribed pred... 🤔

@bunnykins123 sge did say anything over 200 and 0.8 was high that’s all but didn’t mean a thing to me . I was just happy that they had found something possibly causing my miscarriages. You just want it to be something. What were your numbers ? It’s very complex I know . Happy to talk elsewhere if easier xx

@Ratatattat1 thanks for sharing! Some of your numbers are higher than mine but others mine are higher 🤷‍♀️ I don't know much about it all but found this online:

Total NK count is high if over 200
Total NK count percentage is high if over 12%
Total NK 69 count is high if over 0.8

@bunnykins123 hope that makes sense ?? Im
not too sure what I’m looking at or google not giving me much info ?? 🤔

@bunnykins123

@Ratatattat1 I never found out what the norm was but found a few people posting online about what theirs was for comparison. What's your NK cell count and total NK %? I think mine are high.

Ladies . I received my Nk cells and activation markers in post as requested. No problems . Any ideas where I can see what numbers should be and understand it all a bit more ? Thanks

@Freetodowhatiwant thats what I thought maybe not on prednisone (although cheap) as nhs . Probably not that but who knows . Ok. Hopefully she will sort . Just being organised with Xmas coming up. Xx hope we fall pregnant 1st time it’s around Xmas day haha 😛

@Freetodowhatiwant great to hear from you and the success you had under Dr S! I've been on the pred thread and messaged a few times. It's nice to see ladies get bfps under his care. For me, the difference is that this is with his NHS clinic so I think he offers less than what he offers in his private clinic. I haven't found many women online whos just on hydroxy - was that the case for you? So great to hear from you and congratulations on your two DC 💕

@Ratatattat1 they will probably not release it until a few weeks before you need another prescription but worth trying! I don't think your GP has any access to their records. I asked if I could pick up the prescription at my local boots and I could only get it through the hospital which makes me think it's all very specific!

I was one of Mr Shehata’s first patients to be on hydroxychloroquine and through him has my two children. He’s fantastic. Have you found ‘the Pred thread’ which is called something like TTC and pregnancy on prednislone or NI cells’. I started It back in 2011 I think but it’s still going! I ended up making a documentary about my experience.

i don’t recall having any bad symptoms with the hydroxy but didn’t like steroids or progesterone. All worth it though. Amazing treatment.

@bunnykins123 ok . Have emailed today as only going to last until 5th jan . So thought I’d get in early. Hope they get it sorted . Was hoping I could get from my own doc but I doubt it 🤔 thanks xx

@Ratatattat1 I'm on my 2nd prescription, you need to email the midwife. Make sure you call the pharmacy at the hospital before you pick it up as (the email will say they have problems with it too!) they couldn't find it so took a lot of going back and fourth with them to finally get it!

@Stilltrying121 how long we’re you on the hydroxychloroquine before falling pregnant . It will be 6 weeks for me before Xmas time trying again. Also do you have repeat prescription? I’ll run out by 5th Jan ? Emailed but no reply as yet . Wondering if i started them a bit early maybe? Xx

@bunnykins123 i hope so , positive vibes .

@Stilltrying121 best of luck too! I will start again Xmas week 💕🙏🏼

@Ratatattat1 good luck getting them, I hope they do provide them. They wouldn't release them to my GP either. I don't understand the secrecy. Fingers crossed - it's a bit of a minefield trying to understand the 'why's'.

@Stilltrying121 congratulations on making it to 9 weeks! That's awesome!

I had consultation where I was shown numbers but not given paperwork. So I’ve emailed and asked for the actual numbers - whether or not I’ll get it is a different story! It’s all new to me so we are hopeful. No other issues so has to be this I hope xx