Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

@HollyLucky I'm sorry you had that horrible experience! Sounds really horrendous. I would also have stopped if they made me feel that bad - I think you did well to last as long as you did!

I don't have personal experience but I did read someone else's update to at hydroxy gave her terrible side effects (including making all her hair fall out!) and she was switched to pred as a result. Don't bear yourself up - you can't help it! x

@HollyLucky sorry you’ve felt so unwell, I had few headaches and tingling skin in the first few weeks but nothing compared to what you’ve experienced, x

Gosh, sorry tbat was full of typos! 🙈

Arghhhh! That*

Sorry!

@treesall @LRL12 Thanks for your messages.. My husband is petrified at the tought of me switching to Pred as he thinks I might react much worse (which judging from everyone's posts seems to be the case)

@NessyT91 thanks!! Xx

Hi again ladies - I was wondering how much time is enough to build up the Hydroxy before TTC. Is it 2 weeks if you have had a loading dose and 6 weeks minimum if no loading dose?
Thanks again xxxx

@HollyLucky my loading dose was two days, then onto the normal dose for a further 12 days before ovulation and then we were clear to try

@treesall Ok that’s nice and quick! I just read through the previous posts, congratulations on your BFP, crossing my fingers for you :)

@HollyLucky I had a bad reaction to Hydroxychloroquine - within 5 days of taking 200mg per day I had mouth ulcers, sores on my scalp and itchy skin. I get on much better with prednisolone and the only side effect I notice is acne.

@Minta85 I read somewhere else that many people had problems with lots of mouth ulcers too. Glad to hear you are getting on better with the Pred! Did Dr Shehata ask you to shield…?

@HollyLucky I wasn’t Dr Shehata’s patient when I took prednisolone and only took it for a couple of weeks, so that would be something to ask his team.

@HollyLucky that sounds awful! Try not to be disappointed in yourself though as nothing you did wrong caused the reaction, they affect people in different ways. I'd drop a message to the nurses & ask them what next. Pred may be more suitable perhaps...I felt a little nauseous on it & continued upset tummy but not worth putting yourself through something that makes you feel so rubbish!! I hope you're feeling ok today

So I'm sorry for the negative post but I'm really struggling today. Pretty much spent the whole day in tears. Went for my first pregnancy intralipids and the nurse at Dr S' clinic when I asked her if she'd seen many successes just with Hydroxychloroquine just responded with "it's not enough, I can tell you now it's not enough without looking at your notes". When I asked her why I'd been prescribed it she just mumbled something about Covid & not being able to have pred. It took me aback so much that I didn't really respond but now I just feel like nothing is going to work & they're just stringing me along for the money. I know that sounds a little crazy but I can't think straight and just feel like a ticking time bomb, terrified to go to the toilet in case I start bleeding.

I wondered if anyone had a similar experience...thinking of emailing the nurses but just worried they'll get annoyed with me (as nuts as that sounds when I'm paying so much!!!)

Sorry to be so cynical & hope all you lovely ladies are holding up xxxx

Oh @Tumby that's AWFUL!!! I'm so sorry. I have to say I have exactly the same fear, And that's even more depressing that the nurse said that. I'm quite surprised they did - it basically makes out that it's just wasting time, money and energy, nevermind the emotional upheaval of going through it all. Do you know which nurse you saw?

Try and cling on to the fact some people on this thread have had success with just hydroxy, and surely he wouldn't prescribe it if there were zero chance of it working?

It was such a strange experience...it wasn't one of the usual nurses (i.e. not Nicola or Laura) and I think she was a support nurse as could only go so far with connecting me to the intralipids.
I've sent them an email as it's just such a confusing thing to say to someone, especially someone so full of anxiety with it being the first pregnancy under this plan! Will let you know what they say.

How're you feeling today?

Hi @Tumby, It is so shocking for a nurse to say something like that! You did well to email the nurses. If it makes things any better I met a 16-week pregnant lady at the clinic, she was getting her very last scan and intralipid and she was also just on Hyrdoxy. It was her 'graduation day'!

I think you've done the right thing emailing @Tumby. I expect that nurse will be in a bit of trouble for saying that too if I'm honest. I hope they get back to you quickly and give some reassurance.

I got 3+ today which is good, though my gut feeling is still that this pregnancy will fail again. Feeling a bit sad and deflated and emotional about it today and I don't know why! I think it's because I feel a tiny bit of hope, and i know that feeling that makes it so much worse when it goes wrong.

@treesall It is so hard, I would be feeling the same once I reach that stage of waiting... But I always tell myself there is no need to feel sad/ stressed until something actually happens to make you sad. So try to stay positive, you've done everything you could have done, and followed your treatment as you've been told xxxx

Ooh big congrats @treesall on your 3+ . That shows it's heading in the right direction!!!

Thanks @HollyLucky really appreciate you sharing a success story. Hope we all reach graduation day!!

I thought I'd share the nurses' response. It does make me feel a little better, looks as though hydroxy is a good option. Bit weird the way she expressed it in the first place but...

Thank you! Hmmm @Tumby. Thanks for sharing the response. I hope it's made you feel a bit less despairing! Interesting - I wonder what she DID actually mean by what she said then?!

Thanks for sharing the reply @Tumby. Very odd story indeed.
@treesall @Tumby Can I ask whether the Hydroxy makes you 'spaced out' or less able to concentrate on work for example? I am now day 6 off of it and my concentration is suddenly back, and i feel so clear-headed. Just wondering if that side-effect is just normal though for everyone else, and therefore no big deal (in case I try it again in the future).

@Tumby very surprised to see the reaction you got from the nurses, Nicola, Geri & Laura are all lovely and I found to be really supportive & could ask them any questions if I was unsure hopefully you’ll see one of them next time,

I had Hydroxy & had a successful pregnancy I also know of 4 other ladies that were all only prescribed Hydroxy & have also had positive pregnancies, so it can definitely work obviously I know everyone is different but it does have just as good success rate as pred.
With the loading dose I was told once I had taken that I could try straight away didn’t have to wait at all but again I know everyone’s treatment plan is different.
X

I haven't noticed any real side effects @HollyLucky apart from a slightly racing heart feeling the first couple of days.

That's good to hear @LRL12!

Hi @LRL12, did you feel tired and unfocused, like you couldn’t be efficient, when taking hydroxy at all? Or were you feeling normal, ie feeling like yourself? Xxx

@treesall Ok thanks !