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Miscarriage/pregnancy loss

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Original poster

taking Prednisolone for recurrent mc - strange symptoms

35 replies

aliwally · 05/07/2010 14:24

Hi there - hope someone out there has some advice. After 7 m/c's and no apparent solution, I finally decided taken a different route to that offered by Professor Regan's clinic at St Mary's. I decided to look into the NK cell theory as a cause. Very luckily for me I managed to see Mr Shehata (NK cell man) at the St Helier hospital. He's put me on 25 mg daily of Prednisolone and I now hope to conceive and see what happens (if ony it were that simple!) However, I'm feeling lightheaded and dizzy even when seated and sometimes I almost lose the power in my legs when I stand, just briefly. I know I should call him, but wanted to hear of others' experience of this drug first, in case you have any reassuring advice or shared stories. I really want to carry on and see how it works for me, without giving up at the first hurdle!
Thanks all - hope to hear from someone soon.
aliwally

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ChunkyBrewster · 05/07/2010 14:38

Hi Aliwally - I've had to take prednisolone a lot over the years, not for trying to conceive however but for a chronic medical condition.

For starters; I wish you the best of luck and hope it is of some use.

Regarding your side effects - steroids are horrible, I hate it every time I need to take them. However they are sometimes a necessary evil as they seem to work for all sorts of things.

I've been lightheaded and dizzy before when on them. Are you taking the whole 25mg at once or spacing it out over the day? Sometimes spacing it out is best. Make sure you eat before having them, I always find that helps. Drink lots of water. Try to avoid really salty foods as they make you retain a lot of fluid (that fades as you taper off the dose). I find I have a bit of trouble sleeping when on them as well and loads of energy for short bursts, then completely done in.
For what it's worth, I usually get put on 40mg and have been on up to 80mg, for months at a time.

Also you should ask your Doctor about a calcium if they haven't already got you on one as steroids can leach calcium out of you.

I am sure your Doctor would welcome you calling, they always prefer to know at the time how things are affecting you! I just wanted to share my experiences with you though in case it was any help.

Take care.

belledechocolatefluffybunny · 05/07/2010 14:44

Steriods need protein in order for them to do their job efficiently, if you don't eat it then it takes it from wherever it can, from muscle causing wastage/muscle weakness. You need to eat more protein rich foods to stop it from doing this, the leg weakness you mention is a sign of muscle wastage.

I had a 4 week course last year, I ended up spotty and hairy. The dose was alot higher than yours though. I think symptoms change from person to person.

Original poster
aliwally · 05/07/2010 14:46

Hi ChunkyBrewster - that's so helpful and kind of you to share. Sorry you've had to use them too, but I hope they do help you. I've got 25 mg tablets which I take in one go after breakfast, for 2 weeks at a time until I conceive (so, basically, from ovulation to pos/neg preg test). if I do conceive I then have to increase the dose to 40 mg for a further 5 weeks and then I'll be weaned off slowly. I will try and halve the tablets on your advice. Many thanks. I'll also take calcium, up my water and lower my salt intake - all good stuff!

Really good to hear from you - all the best. I feel better already! Aliwally.

OP posts:
Original poster
aliwally · 05/07/2010 14:49

Thanks also to you belledechoc.....

I'll also up my protein intake. All really good useful stuff which I very much appreciate. (I hope not to have to shave on a daily basis at the end of this!!)

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belledechocolatefluffybunny · 05/07/2010 14:50

No, I didn't have to shave, It wasn't too bad to be honest, just a little dark facial hair that was pluckable. It was a fluff really, it all went away (even the spots).

Original poster
aliwally · 05/07/2010 15:02

thanks - it really is the least of my worries if this all helps me to have a child. So, spots, facial hair, bloaty weight gain, and wasted muscles aside, I think/hope this will not be too bad. Always good to hear from others in a similar boat, so thanks again both of you and I wish you well.

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belledechocolatefluffybunny · 05/07/2010 15:04

You aswell. I don't know if it helps, my sister had 4 mc, she went for accupuncture and now has a lovely 3 year old, I'm not saying it works but it's worth looking into.

Original poster
aliwally · 05/07/2010 15:09

lovely news re your sister - I was thinking of going for some acupuncture if I conceive, so thanks for the encouragement

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belledechocolatefluffybunny · 05/07/2010 16:51

She wasn't pregnant when she went for it, she'd already lost 3 quite early on. She wasn't expecting it to work, she was given low dose asprin aswell.

ChunkyBrewster · 05/07/2010 19:58

I'll be keeping my fingers crossed for you Aliwally and honestly all the side effects do go away once you are off them. I use them as an excuse to be horrible to everyone for weeks and say planitively "It's the 'roid rage" (kidding).

Original poster
aliwally · 05/07/2010 21:38

love it - I'm using them as my excuse for "craving" bread and chocolate although I am trying desperately hard to be careful so as not to get too heavy.

I tried acupuncture when not pregnant and my therapist suggested going back when I was, to see how we got on. So watch this hairy, bloated, chocolate covered space!!

Doing something like this, i.e trying a totally new direction and testing a different theory, is like having a new lease of life. After 4 years and 7 mc's it had started to feel like motherhood would never ever happen for me. So, slight misgivings aside about the prednisolone, I'm actually rather excited about some real possibilites, whilst trying not to "put all my eggs in one basket" - if you'll pardon the pun.

Thanks for the support and the kind words.

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ChunkyBrewster · 05/07/2010 21:45

Oh Ali, sounds like you have been to hell and back, I will be keeping you in my thoughts and I hope so so much this works for you.

Big huge massive steroid enhanced hugs.

Original poster
aliwally · 18/06/2011 05:22

Felt like sharing a happy story to give others out there some hope. After my 7 pretty much unexplained losses, at the grand old age of 42 (and an all important half), I'm 37 weeks pregnant. Mr Shehata is my hero. Hope this is ok to post here ...... it's aimed at anyone who needed to hear an outcome, like I did, as all too often we hear the beginning of a story but not the end. x

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iloveblue · 18/06/2011 08:00

What a great outcome aliwally - I'm so pleased for you.
It is true that we rarely hear the ending of story.
Good luck for the next three weeks and beyond x

milkyways · 18/06/2011 09:38

That is amazing! A big big congratulations! I know there are a few women being treated for NK cells after recurrent miscarriages on this board, and your story is so inspirational and positive! I am so happy for you; I've had 4 miscarriages myself and this has really uplifted my spirits today! Good luck with the birth and I wish you a happy life with your little one!

freelancegirl · 18/06/2011 10:27

Hi Aliwally thanks so much for posting. It's so lovely to hear about your pregnancy after 7 losses and that is is all going well. As Blue and Milky probably already know I am about to start Prednisolone with Mr S next week. He said my NK Cell levels were amongst the highest he has ever seen. Which was a bit of a shock. It's great to hear positive stories like yours!

Original poster
aliwally · 18/06/2011 10:30

Delighted to have lifted your spirits and brought something positive to you. So glad I posted. ilopveblue and milkyways - all the very best to you both and thanks so much for your lovely words. xx

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WorzselMummage · 18/06/2011 10:31

What a lovely post. Thanks for sharing and good luck Grin

zonkin · 18/06/2011 10:36

That's lovely to hear. I've just been prescribed 25mg prednisolone daily to tackle NK Cell issues. Have to admit I have been wondering if it would make any difference so it has cheered me up to read your story. Enjoy the last few weeks of your pregnancy and thanks for sharing your experience.

Original poster
aliwally · 18/06/2011 10:37

freelancegirl - our messages crossed. I'm so pleased you've discovered Mr S .... it's a very simple treatment and it certainly did the trick for us. I was measured at 3.5 times the normal level of NK cells which I believe is pretty high but I'm not sure how this compares with others. I wish you all the best with it. His success rate is very high and he seems so confident that this works although even he's not 100% sure exactly how! Stick with it, look after yourself and stay positive. Big positive vibes. x

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Original poster
aliwally · 18/06/2011 10:43

WorzselMummage and zonkin - thanks also for your words. Wishing you success and happiness. x

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freelancegirl · 18/06/2011 11:27

Thanks Ali! Enjoy your last few weeks of pregnancy! I can't work out how many times the normal levels mine are but he said anything over 1.8 is very high and mine were 3.7!

WorzselMummage (if you are having treatment) and zonkin do come and join us HERE as I've started a thread for those of us on Prednisolone to chat/moan/cry/laugh about anything we need to so do and it would be lovely to have more folk on board.

cornflakes30 · 02/11/2011 09:48

Hi all I hope you don't mind me tagging on to this thread, I'm new to the site Nd I have been recently diagnosed with very high nk cells over 3. I also have an under active thyroid and I'm on 150mg of thyroxine. And this is my first month on the steroids 25mg.
I have had 4 mc in the last 18 months and praying this all works now...

eaglewings · 02/11/2011 09:54

Great to read your stories, thanks for coming back to update op

I'm off to have bloods taken today after 3 mc, will they test for NK cross routinely?

cornflakes30 · 02/11/2011 19:38

Hi it completely depends on which hospital you are under I was under st georges originally and they don't test so transferred hospitals to st helier Nd Epsom and they do it.. Good luck