TTC or pregnancy on prednisolone or similar part 12

[teamdozie]

This is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

village, I am under the eye hospital from now on, after the pressure in my eyes rose to 28 and 26 when I was pregnant and on steroids and hydroxy, though they didn't seem to think that was related. Good luck with your 3 follies.

That's interesting I hadn't heard about those tests. I've been on hydroxy the same amount of time as you so will have to follow this up with Mr S next week. He asked me for a liver and kidney function test before I started all the medication but that was it.

I've actually had problems with my eyes and it is suspiciously timed with all the meds that I've been taking. My prescription suddenly got worse and my tear ducts stopped working leaving me with very sore, dry eyes. Am having to use fake tears.

Thought it was just another 'thing' that I was having to deal with, but would be interesting to know if anyone else has experienced eye problems.

Ouuuuu that's interesting!! I've been on it since may last year! He has never mentioned this!!

I will be asking him on Wednesday!!

Village I'm good thanx! Can't beeline I am were I am today!! Good news about the follies! Come on follies!!

Xx

I have been on hydroxy for over a year - yikes!

Luna, Team, Sue - how odd! Luna, I also had the liver and kidney function tests back in October when you and I both signed up with Mr S, and I had them repeated again yesterday in London straight after my S0 scan as part of the monitoring. I've mailed Louise to ask her if these eye and heart tests are standard, or if they've been suggested to me for another medical reason (my age, perhaps?)

Oh Luna, meant to say that yes, eye problems (or visual changes anyway) can be a side effect of taking hydroxy - as listed on the medications sheet we were given at the first consultation. My eyes are actually feeling fine on the hydroxy (I've never had visual difficulties or worn glasses either, however.) Hope you get some relief for your eyes, that sounds very uncomfortable!

I just had a scan - should be 7 plus 3 but it looked like an empty sac and smaller than it should be. Doc was not hopeful but wants me to go back thurs am to have a go on the high res machine. I know I've miscarried - the kitchen clock stopped this morning which was a bad omen but apart from that I've only had v few v mild symptoms. I know my dates are accurate so it can't be that I'm not as far on as I thought :-(
Any ideas on how long it will take to miscarry naturally? I haven't been on the progesterone.

Well, Mr S wouldn't give me another prescription for hydroxy until I saw him as he said it needs to be monitored. Except I seem to have circumvented that with Ari's generous help.
But as I said on the other thread, I've been referred to a neurologist as from yesterday because of tremor in my hands, but I think it might be the hydroxy. I didn't take it today and it's not as bad as yesterday.

Sorry, Charlie, I hadn't refreshed my page. Really sorry to hear you've had a worrying scan. If it is a miscarriage, I couldn't say; my body would hold on to it at that late stage, but everyone's different. xx

charlie I'm sorry to hear that My MC have all been between 8-10 weeks, though when I've been scanned earlier it has been going wrong from early on. In my last MC I had similar news at 7+ weeks (sac and embryo but no HB) but there was some slow development over the next few weeks and finally actually MC at 9 weeks. But as brown said everyone is different.

village good luck for triggering those follies. I've never been on hydroxy, but my local optician has a retinal camera and takes photos as part of eye exam. He is a bit of a gadget geek though, not come across that equipment in any other opticians.

Charlie I'm so sorry to hear your news! I've never MC naturally so I can't give you any advice there I'm afraid!!
Sending you cyber hugs!!

Brown that's interesting about the tremors in your hand' I seem to get then too if I have my hand in a certain position! My eyes seem to be ok! But this is worrying! For a drug that supposedly has no side affects it seems to have quite a few'

Xx

Oh Charlie I'm so terribly sorry. It is so unfair. Was it with dr s? I don't think so? I guess they think it could be Chromosonal. It is what always seems to happen to me too... Mine 7+5 is scheduled for next Thursday and I am expecting something similar as would be par for the course. Did they give you any options if things haven't progressed by Thursday? Been there so many times. Limbo. Back to the bottom of the ladder. Were you on hydroxy, pred and intrallipids? Had you had a beta hcg test or any digi tests with this pregnancy? As for timing to naturally mc I would say within 3 to 4 weeks as the hcg should be dropping. If u can bear it buy a digi clear blue. If it says 3+ then u have over 20,000 hcg so a way to drop and an indication your body is holding on. If 2 to 3 weeks then between 200 and 2,000 and if 1 to 2 weeks then between 10 and 200 and mc should be quite quick within a week I would expect. Of course everyone is different but I know the feeling of just wanting to get on with it and over it.... Big hug Charlie. I'm very sorry to read this news. X

Charlie I am so sorry to read your news. Thinking of you x

Team and Brownstag do you know what, I have also had very slight tremors in my hands. Although i am only on the pred not hydroxy. My eyes have however had extra floaters in them recently.

I am weining off my pred now (was on 25mg). May I ask for some advice, does anyone know if I should wein off this way, 20mg x4 days, 15mg x4 days, 10mg x4 days, 5mg x4 days - stop. OR should I be doing all of the above but for 3 days in stead?

Also is anyone MTHFR positive and on higher folic acid? Are you on this for the full pregnancy?

Charlie I'm so very, very sorry x

brown glad to hear that someone else has been told to do the monitoring too! How on earth did you get around it - if you don't mind me asking? Does ari have a secret stash of hydroxy in her attic?

baking thanks for the info about the retinal camera. I'm hoping that the eye check can be done by my local optician, but it's all a bit exotic to me as I've never had an eye exam before (apart from at school a million years ago, with the school nurse!) I'm not even sure what we're supposed to be looking for in this retinal photo. I'm sure Louise will clarify...

Thanks everyone! Duggs - wasn't with Dr S as I am overseas still. Just did intralipids at 4wks - no pred or hydroxy. I'm hoping it was just chromosomal - my doc here seemed to think it was and that I was 'due' one like any normal person as it was my 4th preg. Duggs - you are due a good one this time!

I had my bHCG taken today and will get the results tomorrow am and will have another on Thurs when I go for the high res scan (if there is any point). My doc said my uterus was retroverted but on all the millions of scans I've had in the past (incl with her, 2 other ob gyns, Dr S, other sonogrpahers) everyone has said it was anteverted. I wonder if it changed after having DS or if she got it wrong?

Tum - I am MTHFR heterozygous but no other clotting issues. I take the 5mg folic acid a few months before conception and i think, i took it religiously til about 14 weeks last time then maybe once every few days all the way through after that. I cannot remember what the official advice was! I think it's normally recommended to take the low dose aspirin for it too especially if you are homozygous. Sorry can't advise on the pred as I've never taken it.

So sorry to hear that charlie.

Really sorry Charlie my heart sinks whenever I hear this :(

Tum I'm coming off 25 mg at the moment and Louise said drop 5 every 3 days! She did tell me if I get headaches to drop 5 every 4 days!

I have been getting headaches but forgot that she had said that and put it down to being dehydrated!!

Hope that helps!!

X

Charlie I'm so sorry to read your news. I hope that you have some strong support wherever you are overseas. Adding my virtual hugs to everyone elses.

Village my optician has the retinal scan (simply a photo of the back of your eye) and I know that Vision Express offer this service at a minimal extra cost.

Tum I was told to wean off by 5mg every 4 days. There have been many posts on here and previous threads of women experiencing side effects after dropping too quickly. I was on 40mg and dropped every four days and felt absolutely fine - it just took a long time to stop.

I would just reiterate to be very cautious about weaning off the pred. It can cause adrenal problems if you wean too fast (I know - this has happened to me) and it's then very difficult to straighten out. Err on the side of caution, and put up with the side effects a bit longer, I would.

cheerful so sorry to hear what you're going through, this process just never gets any easier. Big hugs.

village I had not long since got a repeat prescription of hydroxy when I miscarried for the last time under Mr S, but I never threw it out, I'm a bit of a packrat. My current clinic use neupogen and not hydroxy, so I never used it - made sense to pass it on to someone who can. :) Do bear in mind that anyone can get any blood tests done they like through a private path lab (I go to one in Guildford that's excellent), if they feel they're not being monitored frequently enough generally.

Bear in mind that ANY drug can have side effects - and some may not be widely known. Anything out of the ordinary that you start feeling, get it checked!

Btw I heard from choccy, I'm sure she wouldn't mind me posting but she's less than a couple of weeks away from meeting her little girl and said she'll come on and post when she arrives. So happy for her!! :)

duggs You're definitely way overdue that one 'good' egg ... ! :)

/waves to everyone

Thanks for the advice guys - I will go with 4 days each time I drop 5mg i think x

Tum and charlie, I'm heterozygous for MTHFR, no other clotting issues. I was told by the Oxford clinic who did my tests that it would only contribute to a risk of thrombosis if I was severely folate deficient and that most people on a normal diet don't develop folate deficiency. I'm on 800 mcg folic acid a day (self prescribed), and no one has ever suggested I should be on the 5mg. Is this something I should be considering? I'm on the low dose aspirin (75mg), by the way.

Charlie, thinking of you for tomorrow.

Luna thanks so much for the optician info - I called my local Boots and they do the retinal scan, so all booked.

Louise says that the monitoring is something they're introducing for everyone on hydroxy, when you make their next clinical visit. I'm really glad they're keeping tabs on the meds. I've had no noticeable side effects on anything so far except initial drowsiness on the Ovitrelle shot, which I don't seem to get now, but as ari says things can crop up later!

ari I also have cupboards full of old meds, but I now look at them and think "WHAT was this one for??"

team and baking, hope you're feeling great today.

Waves to anyone I've missed!

Hi Ladies - can I please join you all? I am Under Dr S and on pred and hydroxy. We are tic no 3 (which will be no 2 under Dr S).

This month will be cycle 3. I wasnt on the hydroxy u der dr s wkth my last pregnancy.

However just noticed I only have 10 hydroxy left as totally lost track of time this month and worried we won't be able to get to see dr s before I run out! Trying to see if he will send a prescription to hold me on to next appt - has anyone else been in this situation? Also been reading past posts about all the new monitoring for hydroxy and its getting me a bit worried - although been on it now since November 2013 and feel fine - still worrying though.

Anyway should be ovulating anytime from now - and I a worried about running out of the hydroxy!! Any good luck to everyone else tic this month!

Village I was prescribed the 5mg folic acid for MTHFR but was having it anyway as I'd had problems with epilepsy. The docs I have seen have all really brushed aside the MTHFR thing as it's heterozygous and no one seems to think it's an issue at all.

I got my HCG results back at 12,100. In theory that is in the range of a viable level (just about) for 7 weeks, although I am not hopeful as I'm sure something other than a small empty sac would have been seen yesterday. I had my HCG done at 7 weeks 5 days with my son and it was 95000!

Really cool to hear choccy is just a couple of weeks away from giving birth!