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!

@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.

@bunnykins123

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

@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 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 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... 🤔

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

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

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

Done x

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

@Ratatattat1 I've just whatsapped you!

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

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.