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.

Ok - so here's what happened.

Got there and was sent straight to waiting room for a scan. The sonographer checked my uterus said it was all fine apart from what looked like a clot or some fluid in the cavity. I'm on cd4 and usually bleed for 7 days so it's probably stuff waiting to come out. She looked at my ovaries and they were both larger than normal with a polycystic appearance. All of this tallies up with my long irregular cycles. She said I should come back for another scan.

Then I waited for over two hours to be seen by a consultant. Finally got in with Mr Horner. He had looked through my paperwork and noted all the tests I'd had including nk cells. When he got to that bit he just said 'you know we don't test for this here' and I said yes, then he asked if I'd had the results explained to me and I said yes. He noted I was on prednisolone and just wanted to clarify the dosage. He also asked whether I was going to have any ivig or intralipids and I said no.

I asked about the triploidy and whether it was the result of a dodgy egg or sperm and he said no - it's a rare chance occurrence. I asked whether my long cycles affect egg quality and again he said no. Noted I was on Metformin and said it was probably still too early to see any effects from it (I've been on it since end of March). I asked re Clomid (which I'm not on) and he said it wouldn't bring ovulation on earlier it just helps women who don't ovulate. At one point he said your main problem is long cycles - I was too worn out from the wait to pipe back 'and er miscarrying'

He said usually the next steps would be to have an hsg. Where they look in your womb with a camera - but said that given the number of scans I'd had and my circumstances it was unnecessary. I agreed. The only blood test I haven't had is the Thromboelastogram which tests for clotting in a different way to the other tests. If it comes back positive then the treatment is 150mg of aspirin from bfp. So I had that done today. I also had another anti-phospholipids test done. Am totally expecting those to come back clear.

He said to carry on ttc this cycle as given my cycle lengths I'd probably get the results before finding out I'm pg. He said they'll do another teg when I get pg to see if my blood starts clotting more with pg hormones.

He didn't think I needed to be rescanned - but I might call up next week and double check that. I've got a follow up appointment in 5 weeks time for the results of the teg and apa - but basically that's it.

I think essentially today's appointment was about getting me in the system. There's nothing they could have said to me that would have changed what I already know. I'm pleased I didn't hold out any hope of 'answers' at this appointment. What I am pleased about is their support of my prednisolone treatment and the fact they'll treat me alongside it - doing the teg test and that I should be able to have scans there. So it's about as good an outcome as I expected.

Next week - acupuncture. Two weeks - Mr S.

It is indeed about as good as outcome as could be hoped for there. You took the words right out of my mouth when you said 'Oh and miscarriages' after he said your only problem was long cycles I think it's great though to be getting every avenue covered and really good that he didn't freak out and refuse to treat you (imagine!) due to the conflicting thoughts of them and Mr S.

So is that Metformin to continue then?

I am getting a bit excited about the thought of another appointment with Mr S! And I now find myself getting a bit excited about yours too (note to self: Get A Life). It's his rockstar leader of miscarriage reputation I think. Somewhere along the line I have associated him with a man who can Make Things Happen, despite the fact that he might have baulked at my unfeasibly high killing cells. I must remember to ask him if he has successfully treated people with my levels before. Actually I need to see him after one cycle of Pred so I guess I need to arrange an appointment for two weeks time. He is on annual leave at the moment as I also need to arrange an interview - want to come along and help on that one? If so we can see if can arrange a time suitable for all.

Did I ever tell you he reminds me of this - in the miscarriage world...

BTW, is it just us here now... is there anyone out there....?

I am still lurking here!!! Following you all with interest.

I have my first scan (of this pregnancy 7weeks) on friday. I am on heperin,asprin and progesterone, but did not get organised with the prednisolone in time. So Just waiting to see what happens on Friday. I have a tilted uterus which makes me very difficult to scan, so I am trying to remain calm and be happy to just see a scan, obviously I would love to see the heartbeat and everything to reassure myself. But this is limbo time for me, as the progesterone lengthens the time for me to miscarry. I don't feel very pregnant this time, so I am hoping that maybe things are going well, as normally on my m/c's I feel really strongly pregnant!!!!

Sorry to waffle about pregnancy here, it is a little insensitive of me, but you have all gone through miscarriages so I hope that you forgive me!

No don't worry Willitbe, I purposely titled the thread to include pregnancy so we can chat about various treatment whether ttc or pregnant or neither! Do please come on and chat and tell us how everything is going as otherwise it's just digi and I waxing lyrical about hard core drugs at the moment :)

It is totally naturally to be, what is the technical term? Ah - bricking it, about the scan after all you have been through. And of course 7 weeks is quite early to see much at all, I think, so try not to freak out if you don't get much from it. Think positive thoughts and do come here and chat now, before and after scan too if you can xx

Hello from Edinburgh where am on my own for work, currently sipping a kir royale in a bistro and fiddling with my phone for something to do. I thought I would give an update from Day 3 in the Pred house... Actually I am getting some very weird symptoms. Do they work pretty quickly does anyone know? Am a bit worried that I actually started them on cd16 avd ff reckons I ov'd on 14! Today I have had more ovulation type pains, twinges in both sides, felt queasy mid morning, bloated, the odd dizzy spell (which weirdly I have found quite fun), I have some odd muscle pain and even more weirdly I don't fell like drinking!!! But am sure I will force down a couple. And I feel quite good actually, despite all the wierdness and having woken up at 5am to get to Glasgow. Still no moon face or suicidal tendencies...I do realise I might be fantasising myself into early preg symptoms but I feel it is way to early for that. I also have no belief that would even happen on the first try post mc. And if it did happen I would be bloody terrified the Pred hadn't had time to kick in enough to really start fighting those bad boys. AND even if I were to fall pregnant first try, or any try for that matter, like many of us I unfortunately don't equate being pregnant with having a baby!! Especially with my Empire State level killer cells. Ho hum. How is everyone else?

Ps good luck for the scan tomorrow willitbe!! Xx

Hi Freelancegirl

Hope you're enjoying Edinburgh! How has your sleep been since you started on the pred? Can you drink alcohol on it- I never thought to ask.

I had my first ever acupuncture session yesterday so I'll be interested to see how that goes. Apparently I have too much dampness and thing s are getting blocked as shown by spotting before af and pmt symptoms before af apparently. Although I've been told not to get preg until 3 months of acupuncture I'm not sure I can wait that long now but will get at least a month in before I start trying. I was glad I didn't have to go to work after that session yesterday as I came home and slept for 4 hours in the afternoon!

Willitbe- v good luck for the scan!

Hi Charlie, Yes Edinburgh is great so far. Am having breakfast with my laptop in my hotel.

The acupuncture thing sounds really interesting. I think I am going to do it too. What does 'too much dampness' actually mean..? And how can they dry you out...? Amazing that it knocked you out so much - must be good for you if it helps you relax to that extent.

I was going to ask you when you were going to start the Pred but I guess that means next month when you might start trying again?

My sleep has been ok but this morning I woke up at 5.20am. Yesterday my alarm was set for 5.40 as I had to leave early for Scotland but today I didn't need to wake up at anytime. I did go back to sleep until 8.30 but it meant my temp which was the same as yesterday at 5ish went up as high as it has ever been by 8ish! Not sure why - hot room....?

My chart now looks really weird, for any charters:

www.fertilityfriend.com/home/35dcaf

Plus last night when I got to bed I felt really, really bloated. Like I could look 6 months pregnant if I let it all hang out . It was really uncomfortable. I just worry that even looking at food at the moment will mean I put on weight.

Nobody has mentioned drinking on Pred to me and last night I only had that one Kir Royale anyway. I guess as I am in the 2ww I have an eye on the fact I shouldn't be knocking them back anyway. BUT this is the only time I have done this, as I do like a drop when I go out :) Funny, I didn't feel like drinking anymore last night. But I was on my own. I had intended to allow myself two glasses. Ugh, I feel really full and fat now. I too have lost weight and got really fit recently but the pregnancy/miscarriage thing has meant I have put on around 10lbs. I am really good at going to the gym but it won't seem to shift. Now I am thinking, if I could just bloody well get pregnant and actually have a baby I will worry about the weight loss afterwards. Easier said than done.

I'm really not clued up on acupuncture so I don't really understand the 'too much dampness' thing. From a bit of googling I still can't get it! I presume the drying out will come from lots more expensive acupuncture sessions and apparently avoiding dairy, caffeine, cold foods and raw foods. Oh, and trying to eat only organic meat at least. Good lord, trying to do that on top of eating low GI is very very difficult. It's bad enough just doing (well trying) the low GI. I'm now going to do avoiding the caffeine and no dairy but I will be buggered if I do no raw or cold too! Am I supposed to drink my sav blanc at room temp? I don't think so!

I should be ovulating next at the end of July so I'll be doing the prednisolone then and ttc of course. I feel like I have to get all my fun ( and booze) in now before I get preggers again so have had quite a heavy weekend.

I was going to ask- has Dr S prescribed something called omeprazole to take with the pred once you up the dose to 40mg? He prescribed this for me but can't find any info on it on the web for its use with pred. He said it was to lessen the symptoms of the pred.

Have you had any more preg symptoms? Still no moon face;-) ?

Hi Charlie, still no moon face from me! 6 days on drugs and counting :) I have been hungry but I have also been away (still am!) so eating badly -hotel breakfasts, cream teas, pasta and wine last night... So that can't help. I've def been getting some weird symptoms: plenty of ovulation style twinges, days after ovulating, hip ache, had a 'tri phasic' rise in temp -ie a second hike after the ovulation hike. My favourite mentalling theories have been: ectopic pregnancy, getting pregnant but rejecting it already, pelvic inflammatory disease, endometriosis... Oh and the possibility it could all be in my head. The dampness sounds very interesting and yes no doubt expensive to dry you out :) I dont eat meat at all and managed very successfully to do low carb/ low gi to become super fit and slim last year. Ever since pregnancy and mc I've found it so hard to stick too. Really need to get back on track. As for the omeprozole yes I have been prescribed it too. I am very familiar with it as my nan was on it for a while when taking other hard core medication. It just helps ensure the stomach lining isn't irritated I think. Can't wait until you start your steroids too! They are def not as awful as I thought so far.

No moonface for me either after 3 cycles of Prednisolone but my waistline is somewhat more flabbier than it's ever been

I don't seem to have problems with insomnia. I take my pred in the morning though which I think helps.

I don't know if this is just coincidence but I'd be curious to hear others' experiences. The first day or two off the pred I feel really tired and get quite bad headaches.

I have been mentalling too, but for slightly different reasons. My last period was really scant and along with having quite bad cramps a week before my period turned up I am now starting to get paranoid about Ashermans. The last one was fine but previous ones have been short or quite light. Hmmm. I guess this month I will make even more effort to SWI on the correct days and not trail off too early and if we don't succeed this time and next period is similar I will go to the doc.

Willitbe how was your scan?

I think doctor google has something to answer for unfortunately but also why do these weird symptoms occur now, when we are pretty sure they never uses to! I know we werent keeping such an eye on it before mc and ttc but I am pretty damn sure I would have noticed all the hip aches, ovary twinges etc etc if I had had them before. Same with you kittens and your cramps etc. All very strange. Kittens I can't tell you about coming off the Pred yet, maybe digital can? I have had the odd mild headache when on it, and I am not generally a headache person so am assuming that's the Pred. I definitely need to eat a bit better. I have definitely had less sleep than usual, am waking up earlier, but then it is very warm and as I often work from home and dont have to set an alarm I probably had more sleep than the average person beforehand anyway. Yes would love to know how willitbe is too, let us know if you are still lurking. Kittens, will let you know re Pred when af comes, am on 8 dpo today I think and day 7 of Pred. Will test if nothing happens by next Tuesday I think.

kittens I didn't really notice much after I stopped the pred but I stopped at 11dpo and just assumed anything I felt was progesterone/pmt related (snapping at dh, comfort eating).
I really recommend charting your temps to help you figure out what's going on with your cycle - a light very scant af might suggest that cycle was anovulatory which you would be able to tell if you were charting temps. Everyone gets an anovulatory cycle once a year or so - so it's nothing to worry about (Ashermans is v rare).

Started temping again this morning. Temp was v low which I'm hoping is a good sign as it seemed to be quite high for my pre-ov range last cycle. I went for a run yesterday as I really think I need proper heart-pumping exercise not just regular walking. And going to spend the next couple of weeks eating well and avoiding carbs for dinner. Mainly because I was shocked at how fat my arms looked in recent photos of me at a wedding. Am pretty sure all willpower will go out the window once I'm back on the pred.

Can I just add that I started my healthy, low carb week to make up for the Scotland/Yorkshire badness with.... A mcdonald's filet of fish and a strawberry shake! It was the only place in York we could find with wifi so we could get a bit of work done before the drive home. Oops. Well done on the run digi, gym for me again tomorrow.

It's great to hear none of you seem to have any horrendous side affects from the meds. It's really encouraging me! Now I can't wait til end of July to have a go whereas before I was dreading it.
Freelance - you're 8 dpo already? You could do a 1st response early test in 2 days? The 2 times I've been pregnant I've managed to get v faint bfp on dpo 10, but not as early as dpo 9.

Eek - I meant Effects not Affects. Slap my wrist

Yes I was nervous in the run up to them too but to be honest my body has had all sorts of bloody weird things going on since I last got pregnant in jan so it's just more of the same! Am sure you can relate. But yes it is good u think to try embrace the drugs rather than worry about them, at the end of the day there are hopefully there to do us good. Might be a different story when- if I get pregnant and have to up the dosage to 40! Ohh Charlie you've freaked me out, could I really test that soon? not sure I dare! Last time I tested on day I thought af was due and I felt like I had a bug rather than feeling pregnant. This time all I have so far are those funny ovary twinges. Ff seems to think af due cd29, a week away. I guess it might be good to test early as I could either stop or increase the Pred...

Yes - I tested at 10/11/12 dpo last cycle because I've had bfps at 10dpo before. I finally acknowledged I was out on the bfn on 12dpo and didn't take my tablet that day so my last pred was on 11dpo.

Am currently having withdrawal symptoms from biscuits and chocolate. So tired...

Good idea Digi and then at least you are not taking the drugs for a long time. But isn't there also a train of thought that says you can get negatives for a few days before a positive. Or not likely?

Maybe I should test early too? Camera at the ready...I actually just got really excited (avoiding doing any work) upon arriving back in London to discover the local Poundland has now got cheapie preg tests. I now have three cheapies in the house and one CB.

I followed my 'healthy eating' Monday start at McDonalds with a lunch bag of chocolate coated raisins at a service station. I think that's about as high GI as it is possible to get. I might as well have mainlined syrup, with a snort of caster chaser. And still have a twanging left ovary. Oh it's fun this isn't it

I wondered about the chances of being pg after a bfn at 12dpo and came across this.

I stopped the pred but I carried on testing till 13dpo. By which time I had absolutely no pg type symptoms so I was pretty convinced of game over by then. Interestingly my temp kept climbing - so if I hadn't tested I would have got very excited based on temps alone. Period came at 17dpo.

Ah, that makes sense. Gosh this 2ww is a killer isn't it! I have never really had one before, having only 'casually' ttc. It goes on aaaaaaggees. I guess I will give it about 5 days and might poas.

My temp did something weird anyway so no idea what that means this cycle. Oh well, the more cycle it takes the more I will educate myself...

www.fertilityfriend.com/home/35dcaf

Dr S told me to test at dpo 10 using a first response early test. If it is negative to then stop the prednis. I did ask him about a false neg if as dpo is still early but he said if you use the first response early type it will be ok. The reason is that the pred can lengthen your cycles and taking if for only 10 rather than the whole 14 days ( or whatever) til af, reduces the lengthening. Maybe this was specific advice for me as I have long cycles.

I think Testing early is a good strategy. Afterall if you are preggers, you can get on with the 40mg as soon as poss which might help. If you get a neg but still have pregvsymptons you could make a call whether to continue for a day or too, or even til af.

Personally I don't hold back with the testing. I have a huge bag of Internet Cheapies ( about 50!). They are ultra sensitive and have got a positive at dpo 10 twice with them in the past. I also have a range of 'proper ones' and now Dr S recommended the 1st response earlies I've ordered a few packs of those from amazon too!!! Well when you get a positive it's impossible to only do one test! Although I admit I could probably set up my own pregnancy test shop with my supply.

Aargh the 2ww! The mind tricks! The worst part is staring at the test for 2 hours wondering if it's a line or not. I've made myself late for work before- is it, isn't it a line? You'd think it would be simple. There's a line, or there's no line, but ....

That's really interesting Charlie and seems to be exactly what Digi has done too.

I wonder if I should test tomorrow then? I don't have any First Response ones in, seems a waste to go and buy another one in though now I know I have four in the house! I've just emailed Louise to see what she says.

My cycles have been surprisingly average since the mc started in March - 29-30 days. Before the mc however they were at least up to 35 usually but had been as long as 40 odd and as short as 28.

My chart has actually taken a dip in temperature this morning, but I really must start setting the alarm to ensure I do it at the same time as it has a circle on it rather than a firm dot. This morning it was at 6.30 as DH had left the radio alarm on in the room. But I am waking up a lot earlier since being on the Pred, not sure if it is that or the weather.

I am having cramps too, which is way to early for me but I think I might be getting an earlier period than normal. Don't feel pregnant in any way at all and the only weird thing is the constant twinges in the ovary, so I guess I need to speak to a doctor if they are still around when AF arrives.

Just spoke to Mr S' midwife about testing and she says normal pregnancy tests usually need two weeks from ovulation but First Response is 6 days. It has a failure rate of 60% though so she tends to recommend doing the first repsonse at 10 days....

Hmm, so for me that is tomorrow. But I don't have a First Response test in! Should I buy one or wait 3-4 days and do one I have already at home...?

It depends how desperate you are to stop taking the steroids Freelance, or whether you are just testing due to impatience! For me it was worth paying the extra money for a FR to come off the steroids a couple of days early. Although I did pee on several internet cheapie sticks too.