TTC journey - hydroxychloroquine

[Stilltrying121]

Hi all,

I've been on the trying to conceive journey now for 2 years, with 3 losses (2 miscarriages, one ectopic with one D&C).
I've now been put on a plan with the NHS which is overseen by Dr Shehata as I'm in epsom. I think our hospital is the only NHS one that he works at.
Anyway, I've been diagnosed with high and very active NK cells and have started on 400mg a day of hydroxychloroquine.

One symptom I've noticed which not many people seem to have is real fatigue and always a sensitive tummy. It's become a real struggle and I know I have months of this ahead along with more meds including steroids.

I'd like to know if anyone has experienced the same with this medication and if it tapers off at all?
It's been 6 weeks and I still feel the same. After 10 hours of sleep I wake up feeling groggy and the feeling stays all day :(

Thanks in advance for any advice!

@Stilltrying121 I’ve just come across this post. You’re in the exact same boat as me. Diagnosed with high NK cells with Dr S NHS clinic in Epsom so I’m on hydroxy too. I’ve not found any side affects yet. I’ve read online that hair loss is a biggie and maybe my hair is falling out a bit more but other than that, I feel ok. Did you manage to find out your blood results?

Hi @bunnykins123
Yea I had my bloods done a while back on the NHS and nothing seemed out of place except for the High number and high activity of nk cells.
To my surprise I've just had a positive test so I'm now on the hydroxy, prednisolone, and aspirin.

I think the side effects if the prednisolone can be worse so I'm just waiting to ride that out!

I feel super fortunate to have access to Dr S on the NHS in epsom, don't think I'd get that help anywhere else which would have been a worry!

Good luck!

@Stilltrying121 oh my goodness, that's brilliant news! You've given me a glimmer of hope 😂 how are you finding the Pred? I'm finding im getting lots more colds whilst taking hydroxy which is tough. I don't think this month is our month but great to hear you've had success!

Thank you!

I'm quietly happy but still reserved given that we've been here 3 times already with bad outcomes. Trying desperately not to over worry about every sensation but it is really hard.

I'm not finding the pred too bad at the moment. But I think it can take a while for side effects to kick in. I think the restless sleep and moon face sound the worst to me but keeping fingers crossed that I don't have unfortunate symtpoms.

Hopefully tour body will adjust to the hydroxy and symtpoms will subside, I did read that somewhere on my rabbit hole of info gathering :/

Good luck!

Hi - I have just been to Epsom
also - under Shehata . Raised Nk cells after 3 losses at 6 weeks . On hydroxychlorquine , aspirin and progesterone to start in December when we start trying again . I wasn’t prescribed prednisone?? Not sure why? But going with this . Good luck to you all too! Hoping will get pregnant quicker too! Assume the nk cells make that difficult too! Cmon girls 🙏🏼

@Ratatattat1 sorry to hear about all your losses :( we've had 3 losses and I nearly called it a day. But that's great news that you've got a starting point and a plan.

This is our 4th pregnancy and tomorrow I should be 9 weeks. This will be the furthest we've got, and so far so good, so I'm hopeful the treatment plan will work this time.

Good luck x

It’s so good to hear positive things. Are you on prednisone as well as hydroxychloroquine ? Just wondered why im
not on prednisone too ? Was you on this before falling pregnant? We’ve only ever got to 6 weeks too! It’s a hard journey but I’m glad your on it - good luck! Roll on December for us . It was only high natural killer cells that came bk - all else was normal xx

Yea all my other results were normal too, just high nk cells and very active ones too.
I started the hydroxy a month vefore trying and I should have started the prednisolone from ovulation but I didn't, I started when I got a positive test just because it was such a surprise with timings.
I started the aspirin a while back too and i started the progesterone when I got a positive.

Worth asking Dr Shehata but I'm sure there's a reason behind not prescribing the prednisolone - could be because my cells were very active so needed calming down but that's a guess.

X

Ok thanks . I imagine everyone is different. I’m on hydroxychloroquine 2 a day now initially 4 for 2 days . Then progesterone from ovulation for 10
day until I get positive test (hoping we fall faster now the nk cells are being reduced) did u fall pregnant faster ? We have 5 cycles worth , I’m on aspirin now constantly and will carry on with hydroxychloroquine until 16 weeks , progesterone to 16 weeks and aspirin til 20 weeks . It was only because everything I read everyone was on prednisone too ans thought maybe he’d forgot that bit . I’m sure there is a reason . Mine were 309 and 0.91 I believe x

@Ratatattat1 👋 similar to @Stilltrying121 im with Dr Shehata's NHS clinic. I'm on 2x hydroxy a day. Last month was our 1st month trying but was unsuccessful. Let's see how this month goes but not feeling very hopeful! I was given cyclogest from O but will only take that if I get a positive test as I don't think progesterone is the issue. I wasn't prescribed pred either which I'm surprised at - I wonder if it's due to not having as high levels as others.

Oooh maybe . Glad I wasn’t the only one . Do you know what your nk cell numbers were think mine were 309 and 0.91 have asked for a copy of results , just want to try everything. Did u struggle to conceive, we did 2nd time took 9 months but others were 16 weeks and 2 months. Hoping this helps too 🙏🏼 Xx

@Ratatattat1 who did you ask? The actual clinic won't release them (god knows why!) so I had to subject access them (this felt like such a wrong way to get my results!). I got the details from another poster on Mumsnet as they had the same issue. Do you know specifically what the result was for? I have lots for NK cells. I've had 3 early miscarriages following the birth of DD. Since my last one in Feb, nothing since. Everything else has been normal. I'm also with Dr Shehatas sister IVF clinic so just waiting for DNA fragmentation sperm test results so we can crack on with IVF. It's been 16 months so far including miscarriages 😢

Oh that’s awful . I’ve asked the midwife in charge of recurrent miscarriages . Had 3 also . I saw the paper but think that’s what I remembered. Was 2 numbers . I’m hopeful they will send them . Who knows or maybe my dr may have them . Hope we get our happy ending too . Only bk cells that came bk high xx

@Ratatattat1 I asked the midwife and was told no but maybe this has chanced. Was yours a face to face conversation? Mine was over the phone and I didn't get much in terms of answers. It's a horrible place to be, just feels like I've been in this place for too long now!

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

@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!

Hi,

@Ratatattat1 I don't think I was ever told my actual numbers either but yes I did get pregnant straight away once I started the hydroxy. That was really encouraging as we have struggled with long bouts of no pregnancies in the past.

@bunnykins123 i hope so , positive vibes .

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

@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

@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!

@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

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.

@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!

@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 😛

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