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TTC or pregnancy on prednisolone or similar part 9

(999 Posts)
sarahs999 Fri 31-Aug-12 06:24:33

Oh dear - we reached 1000 posts on thread 8 without noticing! I hope you can all find this. 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!

Links to earlier threads:

Part 8:

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2 here

Part 1 here

cartoontrickster Wed 06-Feb-13 20:37:41

Yeh dh keeps offering me ginger stuff but ive never liked it that much! may have to give it a try though. yup of course ill let you all know how I get on. x

Havingkittens Wed 06-Feb-13 23:18:07

Lawlee, have you been prescribed Omeprazole to take with the pred? I get really bad heartburn and with the Pred it was unbearable but once they put me on Omeprazole with it there was a huge improvement.

I didn't get nausea this time Cartoon, but I've had it in 4 or 5 other pregnancies. I've found sour things really helpful. Tangerines are particularly good, or in fact most citrus fruits. Those dried sour cherries. Sour sweets. Also found Extra Strong Mints helped a lot last time.

sarahs999 Thu 07-Feb-13 07:38:37

Just a quickie to let you know that I too got a neg from a first response at 10 dpo, went out and got hammered having stopped the pred and then got a pos at 12 dpo. And I'm living proof that restarting the pred after a gap isn't an issue - two weeks exactly to my delivery date!

cartoontrickster Thu 07-Feb-13 07:57:44

thanks kittens ill try that I love sour things. I love lemons, most people think I'm strange for that. I shall send dh for a couple of lemons, a big bag of haribo and a packet of polos grin

GreenOlives Thu 07-Feb-13 08:02:09

And lawlee I didn't even start the pred until BFP as I hated the side effects every month and im 37+4 today so bean obviously settled in just fine! grin

Lawlee Thu 07-Feb-13 08:37:09

Thanks ladies, that does make me feel a lot better about it! Good to know I'm not the only one who has wondered smile

Kittens no I haven't been prescribed anything but maybe I should contact them and ask, if its something that helps. I've been really lucky to get seen by them on the NHS and couldn't fault the care and attention i've had so far, but I suspect it does mean I will have to be just a little more proactive about asking for anything over and above the basic meds. Will give it a try anyway!

Yawn, been awake today since 4:45am, the insomnia really got a grip of me last night. i drop off ok but can't seem to stay asleep. Still, it will all be worth it I'm sure! Have a good day all xx

roseandroli Thu 07-Feb-13 17:46:40

Hi everyone! Olives and kittens great to hear stories of imminent births--best of luck with everything.

I had a scan this morning and was given the all clear to travel--hooray! But then came home and had a bout of red bleeding. A small amount, compared with last time, but I can't help but wonder if this little bean is ever going to give me a stress free day!

Waves to everyone. Thinking of you as you wait for your scan cartoon and best of luck for the tww lawlee.

mollieboo Thu 07-Feb-13 21:08:03

Hi girls, sorry for a 'me' post, am on the long drive home from Mr S's clinic (dh driving!). Def have a blighted ovum and have decided to do medical management as I'm too scared to have d&c on nhs. But I'm looking for advice as Mr S advised having a d&c either with him or nhs to test the tissue in case its immune related. Did any of you have tissue tested for this type of mc on treatment? Did any of you not bother getting tissue tested and then go on to have successful pregnancy? Sorry if you've already told me over the past week or two. I'm to go onto 40mg of pred next time, but am just a bit nervous of not doing a d&c now as Mr S has advised me to. I assumed it would be due to chromosomal issues but Mr S said it could be immune related. Thanks for any advice. I'm ok and just want to get the whole thing over with now and move on.

rose glad you managed to get home safely.

Hello to everyone else x

Havingkittens Thu 07-Feb-13 22:15:35

Hi mollie, I'm sorry to hear that. I think my last pregnancy was a blighted ovum as there was only a sac. I had an ERPC (or D&C) on the NHS but didn't have it tested. This was before I started seeing Mr S though.

I get the impression that Mr S only does the procedure under local anesthetic, which I had a really bed experience with personally. Although mine was on the NHS. There is someone on here that had an ERPC with Mr S, but I don't remember who I'm afraid.

rose, good to hear you are back home now. Not great to hear you've had another bleed but at least you can get to see Mr S now and hopefully get some reassurance. Have you been advised to come off the Asprin?

BellyD Thu 07-Feb-13 23:15:41

Mollie so sorry to hear your news sad. I had an erpc at Mr S's clinic in July, under local, mainly so that they could test what they took away. Mr S told me that they had got a result for every person who had undergone the procedure in the last year apart from one. Unfortunately I became the second inconclusive result as the sample became overwhelmed with bacteria, so we never found out the reason for our loss. (I'd be interested to know what success stats he gave you on finding out the cause). This was the second inconclusive result following an erpc in a row so when we had a mmc in Dec we decided to wait it out as I couldn't face going through the whole op again, not to mention the expense. You must decide how keen you are to find out why things didn't work out this time, and/or if you think it would have a bearing on your treatment when you next get pregnant. I think the NHS could send away for testing if you ask them. I agree with Kittens and def would not have it done under local again, especially not in a hospital. Best of luck with whatever you decide. X

Rose glad you have been given the all clear to fly back. Safe journey.

mollieboo Fri 08-Feb-13 11:15:43

Thanks kittens and bellyd. Mr S said the erpc could be done under sedation but I've decided to not do it anyway, feel like I've been through enough. But I am risking not finding out a reason. Mr S said 9 out of 10 women tested have mcs due to chromosomal reason, so I guess its more than likely chromosomal and hopefully the treatment will work soon.

rose on re-reading I don't think you have got home yet but I hope you do soon.

Thanks all for being so supportive and full of advice, there is a wealth of information on here, I really appreciate it.

Hope everyone is well x

Lawlee Sat 09-Feb-13 07:12:15

Morning all. Mollie I just wanted to say I think you are being so brave about it all and I've been thinking of you. I'm glad that you have been able to come to a decision that's right for you, and hope you find yourself on the mend very soon. I'm sorry I couldn't help on the testing front, since I think the only checks mine ever had were for molar pregnancy, but as you say there's a very good chance it's would have been chromosomal results and that wouldn't be affected by the treatment. It sucks so much that we all have to contend with that as well as our immune problems and on top of multiple losses. I just keep looking at Free though and some of the other successful ladies as my shining example of how it can all turn out alright eventually and I'm willing the same for you!
Well 7am here and I've been awake since 5. I was hoping this insomnia malarkey would wear off after a few days, but instead I'm stumbling around like a bit if a zombie lol! So the news from me is that I had the poking & pinching implantation type feelings yesterday that I've had every time I've got a positive, but I know it doesn't really mean anything, even if it was a little embaby it doesn't mean it would stick long enough for a bfp necessarily.. I had 2 days of pos opk's this month so at the most I'm 7dpo and already I want to poas! Arrgghh stupid 2ww. Someone give me a slap!
Rose glad to hear you can come home now, did the bleed ease off? Hope you are already on your way back to your OH.
Hope you all have lovely weekends planned ladies. Xx

cartoontrickster Mon 11-Feb-13 15:28:15

its been a but quiet here! anyone git any news?
lawlee is it poas time yet?
rose have you made it home to dh now?
mollie how are you?
I've got another scan on Wed afternoon I'm actually really nervous just as nervous as I was for the first one! I guess this feeling never really goes away.

TheAccidentalExhibitionist Mon 11-Feb-13 16:46:50

Afternoon all. I haven't posted on here for a few weeks as I was waiting for my test results back from Mr S. I'm so sorry to hear that some of you are going though tough times. It can feel relentless and lonely, that's why this thread is so brilliant and supportive.

Well, it's official, I have high natural killer cells. In the last few weeks I've also been trying to come to terms with a possible diagnosis of Ankylosing Spondylitis - a degenerative condition of the spine. I did some research and AS is linked to high natural killer cells so I guess that explains it for me.

I'm relieved that he has found a cause, it feels like I was waiting for that explanation for so many years.

Unfortunately he doesn't want to risk putting me on Prednisolone as I have a stomach ulcer caused from taking so many pain killers for my back pain. Instead, he has put me on Hydrochloroquine and once I have a BFP I will have monthly intralipid infusions.

I'm disappointed as Prednisolone was what i was expecting and has a proven track record whereas the other treatment is only used occasionally, sometimes on top of pred if there are very high NKCs.
It feels second best and when there is so much hope and money involved (especially as i will have to fly to the Uk each month) I'm having a hard time feeling as positive as I should be. I am delighted about avoiding the side effects of Prednisolone though.

Anyhow, we will wait 6 weeks for the NKC to reduce before TTC. Any positive stories about just using Hydrochloroquine and Intralipids?

Lawlee Mon 11-Feb-13 17:54:34

Hi All, nothing exciting to report i'm afraid cartoon, i did cave but BFN at 8/9 dpo today. Feel like I am probably out this time around, despite some positive signs I don't feel pregnant, and sometimes I think you just know. Still that hasn't stopped me buying another pack of frer, lol. Well it ain't over till its over right? grin I also have a scan on Weds but mine is just a structural one to check all is ok in there, bit annoying as even if I were upduffed it would be just that bit too early to show anything, by like a week and a half, d'oh! Had to wait ages for this appointment though so there's no changing it. Weirdly I too am a bit nervous about it, even though I'm sure there is nothing to see in my case anyway. Will be crossing everything for you cartoon that you get to see fab bouncing beanie pics and hoping the nerves ease off for you.

Sorry to hear of your back troubles Accidental it sounds really painful, but glad that you finally have a diagnosis! I have no experience myself but I think wasn't it Free who set up the original thread that was on hydrochloroquine? Although maybe that was as well as pred. I also seem to recall someone else mentioning in the early threads that they were just on intralipids and nothing else. You could try searching the previous parts to this thread maybe, if no-one else has more recent experience, in case that helps?

mollie hope you are ok, and are being looked after by all around you and not feeling too lonely, there's lots of people out here thinking of you.

Ttfn, will keep you all posted with any more obsessive poas'ing news. X

Abney Mon 11-Feb-13 18:36:41

Hi Cartoon i have been on pred alone and it has failed 4 times. This time hydroxy was added and intralipids and here i am 27 weeks pg so i dont think pred is a must. I think the hydroxy has produced some good results. Of course it could just be that lucky egg.

Abney Mon 11-Feb-13 18:38:39

Oops my post was meant for accidental

Abney Mon 11-Feb-13 18:49:08

Hi cartoon good luck for wed. For me the scans just got more terrifying so i caved in at 12 weeks and bought a dopler. Only ever used it the day of the scans. Dr s raised his eyebrows but it stopped me having a massive headache and walking around like a zombie before the scan

Abney Mon 11-Feb-13 18:56:53

hello everyone else. Dont post so much anymore as i have a new phone and cant seem to be able to get my fat fingers on the right letters or i type and then lose the post. I have kept up to date with everyone. Here is wishing you all well and keeping my fingers crossed for more good news.

TheAccidentalExhibitionist Mon 11-Feb-13 19:30:05

Thanks Abney that's encouraging. Did you have very high NKC?

cartoontrickster Mon 11-Feb-13 20:30:15

lawlee its definately not over yet, remember my bfp took a few days to show up. I had to do a clear blue digi to confirm as my frer was spook faint! fingers crossed. hope your scan shows that everything's normal, I'm sure it will be!
abney I'm seriously considering getting a Doppler at some point. are they easy to use?

Lawlee Mon 11-Feb-13 22:25:59

Thanks cartoon ! Definitely not giving up hope for this month for sure. I just remembered that for some people the pred masks any symptoms too so you never know. smile

Lawlee Tue 12-Feb-13 07:31:28

BFN again today. Oh well. sad

roseandroli Tue 12-Feb-13 07:39:04

Hi everyone, I made it back to London, and to DH, on Sunday night. It's wonderful to be home, and in my own space, after 2 months away. Went to see Dr. Shehata yesterday (at 11 weeks exactly) and was scanned by him for the first time--all is well, the bean was bouncing around in there, and seems fine. Dr. Shehata didn't see any signs of the bleeding. In fact, as I was walking towards the clinic, I felt a gush of something and I thought, oh no, here we go again, more bleeding--but turns out it was something else, some kind of weird pregnancy cm. Or maybe I peed myself with excitement, who knows!

Anyway I am so happy to be here, and so grateful to have come this far. DH got to see the bean for the first time, and is also thrilled.

Lawlee please keep us posted as you poas--pred masks so many pg symptoms, you might get your bfp yet! cartoon best of luck with your scan on Wednesday, I'll be thinking of you. mollie thinking of you at this difficult time. I hope you are all right, and that medical management was not too painful for you.

roseandroli Tue 12-Feb-13 07:39:57

Lawlee our posts just crossed--so sorry about your bfn.

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