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.

Sorry to hear of your mcs too. Are you trying again now? If so it will be interesting to see if the Pred helps you.

The NK cells theory and treatment is still reasonably controversial in standard medicine but all of us have come to it from a point of having tried a lot of other things. So hopefully, yes it will work. There is an 85% success rate in several clinics on this sort of treatment. Unfortunately I have just miscarried again on my first treated go. But will try again!

If you wanted to find out more about it HERE's a link to some info from the clinic some of us are being seen at.

Yes the Pred is a funny drug, I have only been on it for 6 weeks but at a dose of 40mg and just weaning off it now. Definitely got very hungry, ate more and have some pretty chubby cheeks! Hope you are not coping too badly with it.

Hi girls,

Im sorry to keep asking questions but I was wondering do you take all your medication including the asprin at the same time or spread it out over the day?

Also would you have sex or wait until you have a scan to check things are ok? I want to, but I am so worried it will cause problems.

Sorry again for the me me me post xx

Questions are fine! that is what we are all here for - to ask and to answer questions. Even if we are doctor googling.

I would say sex is fine, but I understand the fear. It is pretty much definitely fine though.

Medications wise I actually spread mine out over the day but I do remember someone saying they just swallowed them all together. I got myself one of those 'chocolate box' style medication units (box for each day of the week and four boxes under each day) from the pound shop!

Morning: Pred
Lunch: Aspirin
Afternoon: (with food) Pregnacare, Omega, Vit D and Selenium
Night: thyroxine, Progesterone suppository

It was easy once I got into the routine. I think I might start taking Magnesium too. I am off the aspirin now until next week and should have finished the Pred by Monday. Hurrah!

Have a good weekend everyone, am off the festival without my beloved MacBook Pro (aggghhh!!) xx

Which festival are you going to freelance? Hope you have a fun weekend.

georgie I tend to take my tablets all in one handful after breakfast.

Also thinking of increasing my arsenal of pills. Hmmm, what shall I add? Selenium & Magnesium (can't you get these in combo or are they just the ones that have vitamin A in them?), Agnus Castus to improve fertility and see if I can generate a bit of EWCM, any other suggestions?

I actually joined a gym this week too so maybe getting in shape a bit more will help, and if not at least it might shift some of this Predniso-lard. No moon face for me but definitely a thicker waist! freelance I suspect your face will deflate once the drugs are properly out of your system.

eurochick sorry you got your AF too. It's a fucker isn't it? I mean, generally you feel pretty miserable as it is when you come on so it's not the best day to get disappointing news. Seems a bit of a cruel joke to me!

digi thanks for the suggestion of Omeprazole, I will ask my GP about that as the gastro thing is definitely my worst side effect. Most of the other side effects have dwindled as I've got used to the Pred. I'm still quite clumsy on it and hungry/thirsty but the spaced out dizziness and manic feelings have calmed down a lot. I wonder if they will all return after my 2 month break (that I'm hoping won't happen).

My GP is probably avoiding me. I wouldn't blame him. I'm sure he must have some sort of comedy acronym after my name to define me as a particular sort of patient. In the last few weeks I've had about 3 different hospital referral requests from various angles! One for a review of the outcome of a bunion operation I had a couple of years ago, one for the "facial pain clinic" for chronic tooth grinding and now my Asherman's mentalling. I feel like Dot Cotton in the making!

I will try to give Dr S's secretary a call once I've spoken to my GP about my hormone levels. It seems like when you see him on the NHS you pretty much get the prescription and then you are left to your own devices until such time as you get a BFP then make contact again. Scans would be done by my hospital though so not sure how much contact I would have with Dr S from now on really.

Thanks everyone for being nice to me and sorry for being so self absorbed yesterday. I'm going to try and be productive and positive today!

Am going to shambala which is in Notts somewhere. Just a quickie from me as am checking in en route! Glad you are feeling a bit netter today kittens. If you find anything out about selenium and magnesium do let me know. Am taking the former, from holland and Barrett and it seems to just have selenium in the ingredients list and say nothing about vitamin a, will double check though. I know how frustrating it all is with gps etc, as essentially we are all our own docs. I was reading what you said about mr s appointments on the Nhs and really the only difference is you have more face to face time privately, no real diff in treatment as far as I can tell!

Hi ladies

What does the magnesium and selenium do then? I'm on vitamin b complex to see if it helps with spotting before af.

Last month I had acupuncture I was thrilled that my cycle that month was only 31 days compared with a usual 39 days. This month I haven't had any acupuncture as still not ovulated so it looks like another 39 day cycle. I
'm back onthe acupuncture as soon as she's back from holiday!!!

Georgie- I very much doubt the sex would do any harm but if it's going to worry you, why bother. My first pregnancy I had some spotting and I was told from then not to have sex. In that case it turned out I had this hematoma and sex could have made it worse. it's all highly unlikely it would normally cause a problem and usually the medical advice it that it's fine.

Hope you all enjoy the bank holiday weekend! I'm coming over to the Uk myself for it so please, no rain!

Enjoy the festival free yahoo weather says no rain this weekend so I'm hoping it's true.

georgie I take everything in the morning except aspirin which I take at lunchtime with my met. And cyclogest which I take just before bed. No idea why, just feel comfortable spacing it out slightly.
Also I've not been in the mood for sex at all since getting pregnant, so it's not been an issue. But I think actually I'm avoiding it because I don't want to risk spotting and worrying about spotting. I seem to bruise really easily on aspirin so I'm sure I would do some damage.

kittens glad you're feeling better today. Hope your referrals come through soon.

Btw I looked up effects of progesterone in pregnancy yesterday. It thickens the lining, making it more receptive to an implanting embryo AND less receptive for NK cells. It also stops the womb from contracting and spasming. Which is interesting. I always wondered if maybe my progesterone levels were low in my pg with ds as I spotted and cramped so much in that pregnancy. Progesterone also stops your milk coming in - and in all of my last pregnancies I've started producing milk within days of getting a bfp. I haven't had any yet this pg and boobs are already bigger so am surprised there's no milk. So the cyclogest is clearly doing it's job (barely any cramping save for one day last week). I hope that and the steroids will do the trick this time.

Hi girls,

Thanks for information and advice.

Free enjoy your festival. I bet after a while it will be good for you to have a break from your pc! Im addicted to reading this thread!

Kittens my husband used the Wellman conception tablets, im convinced they help with quality of swimmers! Infact I know they do as last year under CRGH we were having fertility tests and his count went up while on them. Good luck with your new gym regime. Although I see Mr S privately I try to keep costs down so only planned to see him when I got my BFP. I will go for my 1st scan on the 15th Sept with him (I guess if its bad news it will at least be better than being at EPU again) but fingers crossed if it is ok I will use NHS apart from CVS testing.

Cheerful enjoy the UK andf thanks for info.

Digi I seem to be the same as you. Worried about spotting which I had with last 3 MC's. I have decided not to have sex until after 8 week scan. Otherwise I will drive my mad with worry. DH does not know this yet! Very interesting about the cyclogest info.

Happy weekend everyone - only 3 more days and i escape. My head is swimming and I just cant concentrate, I am trying so hard to be positive but I am struggling. xx

Just out of interest Georgie, how come you wouldn't have CVS testing under the NHS?

Kittens I know its not a great thing to say but I dont believe there are enough specialists on nhs or at my local hospital and don't want to end up with someone inexperienced when there is a chance the procedure can cause mc although only a tiny 1% chance.

However, saying all that got to get to 13 weeks yet!

I found a magnesium table that also has calcium and D3 in it (Holland and Barrat) they are giant fuckers though and you take 3 a day.
I've been off the steriods for about 3 days now and I feel AWFUL, headaches and just generally really tired, and acid indigestion. Don't know how much I can blame on steroid withdrawal!

Fair enough georgie. I guess it depends on which hospital you are close to doesn't it. I've had it done at UCH, twice with no problems (well, not with the procedure itself anyway). I think they have a good reputation and I'm lucky that they are my local hospital. Prof Nicolaides who also works out of the FMC is the head of Fetal Medicine there. I am now automatically offered it at 11+3 wks, but it's a bit of a scary choice to make having now had so many miscarriages.

iggi I tend to feel really tired when I come off them too, and dizzy, spaced out and shakey. Touch wood no headaches this time but had them the last 2-3 times I came off them. Acid indigestion seems to be the problem during week 2 of being on them but it calms down when I come off. I am still swigging Gaviscon though but not as furiously as I was last week. Fucking hell, the things we put ourselves through, hey?

FFS I am WIDE awake and have been since a mozzie woke me up at 1am. These flipping steroids mean I never get tired. I have written several to do lists, read the headlines, browsed a few active convos and now am listening to dh and ds snore.

Went to bed feeling a bit unsure about everything so maybe that's keeping me up. Still no real pg symptoms to speak of (no nausea, not tired and have now lost my spinny head feeling) and had a twingy back which was worrying me (thankfully stopped). Had acupuncture this evening so not sure why I'm feeling like this. I suppose I still am off sweet things, which is comforting.

iggi & kittens Sorry to hear of shitty steroid withdrawal side effects.

georgie hadn't even thought of cvs. In fact no idea what I'm supposed to do re 12 week scan/nuchal test, and booking in with a local midwife. Might ask St Mary's about that at my next appointment.

Kittens guess what? Prof Nicolaides who works at the FMC is apparently the best! That is who i am booked to go and see privately. Small world! UCH is a good hospital East Surrey is not! (In my opinion of course)

Digi I never had cvs testing with my DD 4 years ago but as I am 42 now and will be classed as higher risk automatically, it is to put my mind at rest.Try not to worry too much about symptoms as I think the pred masks most of them. like you apart from my boobs been a bit bigger i have no other symptoms. I read your post around 4.30am but couldnt respond in case i woke DH.! I went to pick up an early pregnancy pack at GP which has a form to send off to organise 12 week scan.

Well happy Friday to everyone xx

That's good to know georgie - he isn't actually my consultant. I think you'd have to get pretty lucky to get the head consultant on the NHS but I figure if he heads the team then his team must be good too.

Digi, you can decide whether to have a CVS or not based on your Nuchal/combined tests. It was so clear at my nuchal scan both times that there was something wrong that they didn't even need to take blood tests and I ended up having an emergency CVS on the same day. I would recommend taking the following couple of days off to anyone having a CVS, and do absolutely nothing but lying around watching DVDs/reading/internet just to absolutely minimise any risk of mc, even though the odds are actually pretty low. BUT, get some bloody good films and books though. You'll need the distraction whilst waiting for the results!

Well I'm off on holiday for 2 weeks.

I hope all your apts go well with Mr S, thinking of you all

Xx

Enjoy your holiday georgie - hope you get to relax a bit.

I'm 6+5 today, milestone of mc#2. Have been feeling fine all week - too fine. Apart from heavy boobs - which I am putting down to the cyclogest. I had a nap this afternoon and have woken up dizzy and nauseous - which I'm hoping is a good sign. But I'm actually on high alert now. Any sensation - cramps, twinges, back ache, anything like that - is now worrying me rather than reassuring me. I just have to get through the next 12 days.

I have a big birthday cake to make tomorrow along with about 60 cupcakes. Hopefully that will keep me distracted.

I had no boob-heaviness with last pg Digital, despite taking cyclogest. So I think yours is a good sign.
Now been off steroids for 5 days and still having headaches. Also eating more as lethargic and fed up. Think I should just take the tablets permanently!

iggi thanks for the reassurance that has made me feel better, knowing that maybe my body is doing what it's supposed to on it's own. But at the same time that you're speaking from experience.

Wrt the headaches perhaps you need to wean off the pred gradually each cycle? You can get pred in 5mg tablets. But hopefully you'll be taking them for a bit longer next cycle and will be gradually reducing dose anyway.

Sorry I have not posted anything for a long time - have been away. Congratulations to those with good news and have been really sorry to read about the bad news. I've just had my first month of steroids and came off them last weekend. Didn't feel too awful on them but have been really quite ill coming off - headaches, nausea, really bad pain in the back of my neck and feeling really low. I also didn't realise that they can delay your period so I was five days late and now not entirely sure when to start my next countdown! Think I will have to taper off them each month but as Iggi says almost feels as though there is no point stopping them each month!

Hi all, from the other side of three long nights in a field. It was good actually, but hard work too as these things tend to be when rainy ? not much sleep, a lot of drinking and eating?. great to come back and wash everything, including myself!

Digi, interesting about the Progesterone in pregnancy. It?s good to add this info to our arsenal of knowledge. Especially about the milk thing. My boobs weren?t big at all with the last pregnancy. Although they were with the first one this year and that went wrong anyway so I am not sure about boobs in terms of my own indications. But it?s good to add that to what we know about Pred masking symptoms as well. Hopefully it will help those pregnant amongst us freak out less about lack of symptoms.

Georgie that?s good info too about the conception tablets. Just read it out to DH as I am constantly on at him to take them, which he is doing so am pleased. Have a great holiday! In case you check in whilst away of course.

Sorry you are feeling crap coming off the steroids Iggi and also Comedy. I think I am getting that too, especially from what Kittens says as well. When pregnant, when miscarrying, before and after the ERPC and up until this weekend I have at least once a day had a feeling of crushing fatigue. It just comes out of nowhere. It goes after a bit. I am still hungry too which is annoying. Tomorrow I am taking 5mg and then I think I might completely go off it. I took 10mg today and am reducing a tiny bit quicker than they told me too but I just want to be off it. Talking of Pred, I remember that wide awake thing well Digi! Very irritating. Heavy Boobs are good though! Hope the cake making went well. It never ceases to amaze me how people with children suddenly develop all these skills! I need to develop a few myself. I get kicked out of kitchens.

Welcome back Comedy. I read somewhere ? Dr Googling ? that some docs suggest staying ON Pred all month, but I only read this from one person on a random forum. I think they had been told to take 10mg even when not ovulating. I am making a list of things to suggest to Mr S when I see him on the 8th. I am hoping he has a plan of action for me anyway. On the Immunlogy thread on Baby Centre I have ?met? several people who have also had mcs whilst on treatment and sometimes their plans change and sometimes they just get on with it all again and hope for the best.

Talking of which, it?s been a bit difficult to check knickers much this weekend (avoid going to the loo as much as possible at festivals!) but I think from getting a bit of cm and also from some weird twinges that I might be ovulating. It?s 14 days since I started to bleed (at what would have been 8 weeks pregnant if anything had bloody grown after 5.5 weeks) and 10 days since the ERPC. So that might make sense. I will keep a close eye on things to see whether that means AF will arrive a couple of weeks after this weekend or not. I remember after my last mc ovulation felt very obvious too. Must be where the process has had ?a break? when pregnant. Well that?s my own crack pot theory anyway!

Welcome home Cheerful! Hope the weather isn't too unbearable for you.

PS some random Dr Googling lead me to this site:

sites.google.com/site/miscarriageresearch/home

It has links to articles and research relating to miscarriage. Thought it was compelling reading.

Hi free! Haven't clicked on that link yet as am on work PC. DH managed to smash my phone over the weekend, which has seriously impacted on my MN'ing time. I currently have cling film stretched over the screen to hold all the shards of glass in place.
DS's party went really well. Utterly exhausted today. Why does a 3 hour party take two days of prep? Waiting for some decent pictures to come through from relatives and I might post the picture of the hilarious cake I made.
Mild nausea and backache seemed to perfectly time itself around the party so during the event itself I had loads of energy and was even told I look 'really slim' hahah! Seriously it must be my haggard looking insomnia riddled face that's deceiving people as I am rather porky at the moment and it is definitely mostly carb-related.
After my freakout on Friday I'm feeling a bit more pregnant today, which I know means nothing, but for now I'm reassured. Unfortunately it also means I have to face facts and tell my boss as I have a shoot next week the day after the scan. And if it's not good news then I'll be abandoning the shoot at the last minute...

Right have to dash. Hope everyone's ok.

Forgot to mention a horrible side effect I'm experiencing - two patches of dry skin either side of my mouth showed up about a week ago. That combined with my eye bags and haunted look make me look like some sort of glue-sniffing junkie. It's got to be the 'roids.