TTC/ pregnancy on Prednisolone or similar

[freelancegirl]

I am not sure there are enough people here to start a thread but have been chatting on one on the pregnancy boards and was wondering if I could find any fellow ttc'ers on Prednisolone or similar?

I have just received a diagnosis of very high NK cells. It was a bit of a shock actually as it turns out I have some of the highest levels - 3.79 when anything over 1.8 is considered 'very high'.

Am trawling through Dr Beer's book and Dr Google and trying to found out more. I have been recommended 25mg prednisoline steroids for two weeks starting with ovulation, increasing to 40mg if/when BFP and then Intralipids Cyclogest too. I still have 13 days until I pop my first Pred.

There now just seem like so many hurdles - actually getting pregnant being the first one. I was prepared for high NK cells as I have high thyroid antibodies but it was shocking to be in the top 5% of people treated at the clinic. I am not sure if that gives me much less of a chance of being successful.

It would be great to hear from anyone else who is undergoing treatment and of course also if you've had successful treatment.

Congratulations Brownie, hope all goes well and without dramas.

freelance, I felt quite crappy when I took anti malaria pills, but come to think of it probably no more crappy than when I first started on the steroids. perhaps the body also gets used to them? I didn't stay on the malaria pills long as my dad told me they weren't in a high risk area in his part of Costa Rica and also, I didn't have a potential baby as an incentive so perhaps (as we have already found out so far) we are willing to put up with more for that goal. Sorry you have had the sadness of a passing due date. These are always poignant, I know. I have protected myself from this more recently by not even considering that there will be a due date and therefore taking no notice of when it might have been unless it is looking like it may become a reality. But I do understand the feelings you're having as my first 4 due dates were very much on my mind.

Lovely to be here in France. Mum is on good form and thrilled to see me too. The bad times are in the future, now we must enjoy!

Well after my 2 weeks off for much needed relaxing time I went back to work yesterday ! Wish I hadn't bothered, found out people have been bitching about me saying I'm pregnant not ill and I should be at work ! IGNOGANT pigs ! They know nothing of my situation and have no idea of the hell we have been through I'm gutted !!

So sorry for the early morning rant but I haven't slept for worrying and feel like my 2 weeks chilling has been wasted. So upset cried at work yesterday and here crying now. Am so mad as my boss won't tell me who said it either so I can't even confront the horrible person. I'm so upset, just want it to be February so I can leave !

Sorry again

Hi Stogan, sorry to hear what happened at work, can't understand why anyone (your boss?) Would tell you someone had bitched about you, it is pointlessly upsetting. Tell him you will be off again if he does not ensure you have a decent atmosphere to work in, he has a duty of care for you. Though (trying to see positives) it IS really common to have a moan about absent colleagues, it doesn't mean whoever said it has a really big problem with you, they don't know all the facts and were maybe having an off day themselves.
Free you arrive back while Kittens goes away - did you pass in the air?? It's nice to think S is not resting in looking for a solution for you. Sorry about your due date, each one is different but they always make me consider the "other" life I could be having if things had gone differently.

Stogan that is indeed rubbish of your boss. What sort of company do you work in - a large one or small one? I would be tempted to write a carefully crafted email telling them what you have gone through and why you were off. Just to make them feel bad about themselves for having bitched about you when you have been through such a bad time. People seem to clam up about miscarriage don't they, but mayne in this circumstance you should let them know.

Great that it is good there in France Kittens. Yes it is so important to enjoy the moments that you have and try to be positive about things. I know sometimes that must be hard. Is she due any more treatment or has she just said she doesn't want any more?

Thanks Kittens and Iggi about the comments about the due date. Yes it is weird. Can't imagine what it must have been like having 4 due dates. My first two miscarriages didn't matter to me if you know what I mean, so yes it did pass through my mind that I would have had a baby by a certain time but I was more relieved at the age of 20 that I hadn't! Naively I didn't connect previous problems with having problems when I was pregnant this year for the first time. Yes it did cross my mind that miscarriage was a possibility but only as much as anyone else and deep down I thought this wasn't going to happen to my baby. The second one this year was different, when that due date in March comes around I don't feel I will be as upset as I was yesterday about the loss of it. But yes Iggi it does make you consider the other life you would be having as a mum.

I have taken anti-malarias a couple of times before - one I hated and the other I didn't mind. Can't remember which one I felt awful on though! Probably the one he might recommend me. Half of me is thinking... hmmm wonder if it will cause nausea and might cancel out the Pred hunger :) but am not sure when he would prescribe it from in terms of ovulation or BFP or what.

Hi free. I've read about anti-malarials being used for immune problems but never "met" anyone who has gone down that route. I've taken them before for travel and found them fine. I think it was malarone I took though, not the one suggested as a possibility for you.

I'm sorry to hear about your sad anniversary too.

Stogan its awful that your boss told you that without telling you who said. I think I might be inclined to tell the office motormouth, at length, all the terrible things I had been though so it gets back to whoever said it and they feel suitably ashamed.

Hi to everyone else!

Thanx for the congrats and optimistic mini waves.

Free Sorry about you feeling blue with your due date yesterday. It is so difficult to think about normal things on those days when everyone else just seems to be getting on with their day and moaning about the small stuff. I often wonder "what if" things would of turned out ok. Tis good Dr S is thinking about you and how to give you the best possible outcome. Good man!!

Kittens You are being so strong for your Mum, it is a credit to you. Enjoy your time with her and stay strong

Stogan Am not sure why your boss had to tell you that?! I agree with Free, I would send an email and say that you are sure they would do exactly the same as you in your position given the ordeal you have been through in order to give things the best chance of working out. Honestly, what is wrong with some people, shame on them. Your boss should be shielding you from this for sure. Don't let their ignorant comments get to you, you are doing everything in your power to have a baby and that is the most important thing.

stogan that really is rubbish . It's awful finding out people have been gossiping behind your back. I'm sure if they did know the full extent of your history they wouldn't have said anything...but it is a question of whether this bothers you enough to do as others have suggested and tell all in order to stop the negative comments (they'll still gossip, but it'll be 'poor Stogan' rather than 'what a piss taker'). But if you want to remain private then best thing is to ignore it all - if no-one is actually rude to your face then no need to behave any differently...let them gossip away till they get bored of it. As long as you don't suffer any discrimination then just keep reminding yourself that Feb will be along soon enough and all the effort and struggle will be worth it. However, the merest whiff of someone mistreating you then you can run to your boss and wave the sexual discrimination act under his nose.

free my sympathies on the due date. I never really held much importance with a specific date as I always expected that if a pregnancy was going to be successful I'd have the baby somewhere around three weeks before the due date - so it was always a due month for me, which maybe spreads the pain a little. But I try to look to the future - if I'd had the first baby, I wouldn't be pregnant with this one now and this one very much deserves to be born (if that doesn't sound to 'smug preggo' - I'd hate to come across like that).
Very interesting to hear about Mr S's new approach. I wonder if that particular drug is the one we're normally told to steer clear of in pregnancy. If you're going to see Mr Acupuncture soon I would mention this to him and get his opinion. He knows a lot of Mr S's patients and may know of other women he's tried this with and whether it's been successful or not.

Speaking of which, I had my last acupuncture session on Tuesday. I'm going to miss them (especially the opportunity to have a lunchtime nap) - but it's another milestone for me to be able to say I managed to get through all my early pregnancy sessions.

brownie congratulations!!!! Did you start pred from ov or BFP? You may not be able to get your meds from a hospital consultant but a sympathetic GP should be able to help. Good luck staying sane till the 17th. Personally, I found denial was the best way to get through the weeks. Was especially easy being on steroids and having loads of energy - just filled my days with lots of tasks so I didn't have much time to dwell.

kittens glad to hear your mum's spirits have lifted. How long are you staying out there do you think?

iggi hope all's well with you. When are you back for another scan again?

euro good luck with getting an appointment with Mr S soon - let us know how it goes. My acupuncturist also recommended the ARGC and the Lister as two clinics that he's seen the greatest success with.

ari how did the GP appt go? Any luck getting them on board with the treatment?

Hey ladies -

First off, sympathies to you free for your due date .. I do occasionally think "I should be x weeks pregnant by now" or worse, "my baby should be 2.5 months old by now" but I do try not to stay in that thought. Still a bad anniversary, though hugs

Stogan I can only echo the others on this. It's shtty that you've had to encounter some ignoramus who can't bother to think a positive thought about someone they know largely nothing about! I have a similar situation at work, and I really feel for you. Bar-stewards the lot of them .. please try to let it not upset you too much, after all they have to live with themselves being that shtty, don't they - you are the better person all round!

I would like to say .. I love my doctor! (even though it's been a nightmare getting to actually see her!). She can't help me with the meds for NK cells (and she explained why - she has to justify everything she prescribes to the Surrey PCT, and she can't get away with anything that doesn't have BMA/NICE approved guidelines). She was very interested in Mr Shehata's results though, and has noted it all on my records (while I was there, so I know she did!), plus asked me to get reception to do a photocopy of all of my blood test results.

She did have a really useful bit of info though, with regards to the costs of prednisolone - she said make sure you ask the chemist only to dispense you our dosage in 5mg tablets, not 25mg, as they're a LOT cheaper! Ok so you may have to take more tablets a day, but it's worth it. She looked up the cost for me, 100 5mg tablets worked out to about £9 she said, whereas the equivalent dose in 25mg is nearer to £50! I went and checked this on the Lloyds Pharmacy website and you know, she's right - if you order 2 weeks x 4 cycles of 25mg pred in 25mg tablets it's pennies short of £50, but if you order them in 5mg tablets (280 tablets I think) it's £14. BIG difference! Ditto with the 40mg - 5 weeks' worth works out to £14 in 5mg tablets (same amount, 280 tablets I worked it out to) - ok, so you have to take 8 of those a day if you're on 1 x 40mg dose a day but you know, it's worth it for the price saving. And another btw, Lloyds Pharmacy online is much cheaper than in the store .. I worked out my 40mg pred/20mg omeprazole/400mg cyclogest prescription for 5 weeks works out to just short of £50 total for all three meds.

Anyway, even this isn't why I love my doctor. It's the thyroid part of it - she took one look at the blood tests and Mr S's comment and said "subclinical underactive thyroid, eh? I can deal with that!" and proceeded to write up on her screen the justification for this diagnosis, printed me a 2 month repeat prescription for the dose of Thyroxine Mr S has said to start on (50mcg), and gave me the application form for free prescriptions now on - without me having to ask! She didn't quibble the results against "approved" ranges - she did show me that my TSH level at 3.29 falls below the "standard" 0.5 - 5.0 range but agreed with the Free T4 being too low, and surprisingly told me that I had been tested for TSH levels in 2008, which had come back at 2.89. I didn't even know I'd been tested for that then!

She hadn't heard about thyroid levels needing to be tested and meds possibly upped during the first trimester, but was very interested and said she wants to retest my bloods in 6 weeks, once I've been on the meds for a while.

And she was very interested in the MTHFR homozygous result - hadn't heard of that either, but immediately looked it up and prescribed me with a 2 month repeat prescription for 5mg folic acid and low-dose aspirin.

She was generally very down to earth about the whole thing; accepted Mr S's diagnoses without a quibble and was just apologetic that she can't help out with the steroids side of thing. I understand why, if her hands are tied by the PCT around here - obviously she can't help with the intralipid costs anyway, and if I can get the meds for £50 I'm not quibbling.

Phew. I was all prepared for an almighty argument, and SO thankful that I didn't have to in the end!

Lord, so so sorry about the length of this post .. I'll go back to skulking now :) free if you email me your addy I'll get replacements to you as soon as I do get my prescriptions filled .. and thank you again!!

Ari x

Ari I am so bloody pleased that your doc has agreed to the thyroxine! What a relief all round. Great news, really, as doctors can be so difficult about it. Funny that your TSH was going in that direction in 2008 too. Don't be silly about the meds - I have loads. And that is good advice about the Pred prescription too, will bear that in mind if I ever have to pay for it.

Hi Digi. No you don't sound smug pregnant at all, we all know what you have been through so are all very pleased it is going so well and know how much you must be mentalling too! Yes it is right in not putting too much importance on the dates too. At the end of the day it can't change anything.

I emailed Mr S' clinic last night to reply about the mention of Hydroxychloroquine and he apparently now does indeed want me to try it! Not sure when I am to start (am sure it will all come clear) or whether this is as well as the Pred and intralipids, but he is sending me a prescription. Am quite excited that I will be trying something else!

He said it isn't even researched yet but he has tried it successfully on someone who also didn't manage a successful pregnancy on the Pred and now is going to try it on me. Will find out more soon as it's another 4 weeks until I start TTC again. I have actually taken it before when travelling as it is an anti-malarial drug. I don't think the side effects are much fun but then neither are the steroids.

Have posted on the Baby Centre Immuno boards to see if anyone else has any experience of this!

Thanks free ... yes, I was mightily relieved too, I was dreading having to fight my corner (yet again) and so relieved when she just took it all in her stride. And thank you for the meds then .. if you ever need any, you know where I am ;)

digi you be vocally pregnant as much as you like, it gives the rest of us hope, honestly! Well that's how I feel, anyway :)

free I did a little bit of Dr Googling (as I do, and just out of curiosity) and couldn't find anything suggesting hydroxychloroquine as helping prevent miscarriages. It interests me - did you ever find anything yourself? I saw no-one on the BabyCentre boards knew anything so far. Fingers crossed that this works!!

No Dr Google info, no Baby Centre Experience... It is all a bit of a mystery. I feel honoured to be part of the experiment .

When I saw him last time he said he had tried it with success with one woman and that was it. I inquired about it for me and he said he didn't want to just chuck pills at me. But then in his letter he had clearly been re-thinking it. Maybe he has tried it with more people since the 9th Sept when I saw him but there wont be many.

He said he was sending me a prescription for the hydroxychloroquine so will see if it comes with any instruction as to what to do, when to take it, what else to take etc etc. I don't have an appointment scheduled with him at the moment but imagine one will need to be made at some point. Interesting stuff though. I am not looking forward to going on the Pred. How are you handling it so far?

I was looking through my video diaries, having recorded another one yesterday, and marvelling at my moonface having disappeared. It was like I had put on weight, which I had, but this time it was disproportionately in my cheeks!

Well the 25mg pred seems to be doing absolutely nothing to me - de nada, zippo, nuthin'! No increase in energy, no inability to sleep, nothing. Is it only the 40mg dose that starts off the yukky side effects? Or perhaps I've just not been taking it long enough yet - this is only my 4th day.

Exciting stuff, being a trailblazer .. and I would certainly hope the prescription comes with instructions, unless your crystal ball is polished and functioning well right now? (if it is, can you give me the EuroMillions numbers for tonight please? ;) )

Euromillions would be nice! Help upgrade mr s' holiday options :)

By the way, as Ari has already seen, I did a little edit of two video diaries from Moonface to less Moonface. Anyone want to see it pm me!

Ari, you're doing well. I have been on the 25mg and had pretty full on side effects. Although, thinking about it, I think they kicked in after about 3-4 days. Especially the manic-ness. That part of it seemed to calm down after my 2nd cycle though. I had no insomnia at all, lots of heartburn & bloating (although I'm prone to that sort of thing anyway), shakiness, dizziness, and weirdly, really intensely popping ears!

Oh, I've just seen your ear-popping bit! I definitely have a congested feeling in my ears/head since taking them. I am prone to labyrinthitis so thought might be that.

I'm also prone to inner ear related dizziness. Not sure if it's actually labyrinthitis as the doctor has never been able to see anything wrong with my ears but I had it every year, around the same time, for about 10 years! But I have definitely noticed that it comes on in a big way when I take the steroids and is the reason for a lot of my feeling spaced out and dizzy, and sometimes super sensitive to noise.

Ooh, a new link? Though I guess if we looked hard enough we might find something (maybe we all like peanut butter) that is not a cause of mc! (Though who knows?)
Have spent a miserable half hour looking through my pg diaries to see how far I am today compared with how all the rest went. Oh the fun.
You're up late kittens.

Even later considering I'm an hour ahead of you! Lots on my mind. I faff about on the internet for a distraction!

I do like peanut butter! Spooky... :) Actually I do have weird dizzy spells too, I am getting a few of them at the moment. Having thyroid problems though always churns up a lot of mild but annoying issues. Every so often
I have a new symptom, get worried about it, look it up and find out it's thyroid related. Just found my current aches and tingles and even carpal tunnel is related. Have slightly reduced my thyroxine as was a bit on the over active side.

As regards reactions to the Pred, within about 5 days I was feeling it on the 25mg. Waking up early (6.30 instead of previous 8.30, with no alarm set), by the time I had been on it 10 days I remember getting a huge energy rush, feeling like I wanted to pick up a car Incredible Hulk stylee. I was also really hungry. I WAS however also implanting etc at the time so some symptoms could have been down to early pregnancy.

I wonder, could anyone who has paid for a scan with Mr S let me know how much it cost? I'm trying to budget

Pretty sure that the first scan is a rather wallet-watering £350 and after that it's £250. Budget well, my dear, and make sure you shop at ASDA...

I could definitely do with the Incredible Hulk stylee energy rush .. day 5 of the 25mg pred and still not feeling a darn thing (I know, I know, I shouldn't complain). No extra energy, can't really say about the waking up early as DD woke me at 5:25am this morning by calling for me .. in her sleep! Unfortunately I do wake at the slightest noise child-related anyway, plus I suspect maybe the constant tiredness (likely from the thyroid issue) outdoes any extra energy the pred might be giving me? shrug no idea, really, I'm bowing to all your expert experiences!

Peanut butter ... ooooh yummy, lovely stuff.

None of you ladies the UK EuroMillions lucky b*stard person then? Not me here, sadly - with £100M in my back pocket I'd be happy to bump up Mr S's holiday options!

Arain I've had one super-energised time on steroids, and the other two times I haven't felt much at all. Not sure how that works!
I had a long rummage on the S website and found a price list, something about an initial scan being 210 - which I would have thought really really expenisve, if I hadn't read Free's post first! All of this goes on credit unfortunately, having stupidly spent what savings we had the other year on a wedding.
I go to London on the train tomorrow, it's the journey back (post "news") that I'm dreading!

Hello predders - I'm 13 weeks today and now down to 10mg and regularly dropping off for an afternoon nap. I don't think I was too manic, but I had an uncanny ability to keep myself busy which seemed to increase as the weeks went on. My default mode is most definitely lazy but on the roids I was able to do so much. Mainly cooking and housework related (much to dh's amusement). I think I'm not liking coming off them - feeling like I'm not doing enough now.

I also like peanut butter!

Hello I am still around - no internet in the house yet so I am lurking but not posting much. I am 10DPO today - my temp dropped today which is early so I am hoping it may go up again tomorrow. I am feling quite sick but think that may be the pred more than anyting else

I went to get some pred out of the drawer yesterday and realised my GP didn't give me enough, luckily I had some emergency supply, so will have to see my gp tomorrow for more.

digi 13 weeks alredy - huge milestone for you :)
iggi fingers crossed for you tomorrow - I know when Mr S said he likes to see people for scans at 6,8,10 and 12 weks I did think 'no chance' I can't afford all of those!

hello to free Kittens Ari brownie stogan and euro and everyone else. I hope to be back on line by the end of the week and can do a proper catch up xx