TTC or pregnancy on prednisolone or similar part 10

(1000 Posts)
roseandroli Thu 14-Feb-13 10:17:57

We are now on part 10 of this thread! 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 9: http://www.mumsnet.com/Talk/conception/a1552980-TTC-or-pregnancy-on-prednisolone-or-similar-part-9

Part 8: www.mumsnet.com/Talk/conception/a1492407-TTC-Pregnancy-on-Prednisolone-or-similar-part-8#33842381

Part 7 www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

Part 6 www.mumsnet.com/Talk/conception/1419032-TTC-Pregnancy-on-Prednisolone-or-similar-part-6

Part 5 www.mumsnet.com/Talk/conception/1391787-TTC-Pregnancy-on-Prednisolone-or-similar-part-5

Part 4 www.mumsnet.com/Talk/conception/1366323-TTC-Pregnancy-on-Prednisolone-or-similar-part-4

Part 3 www.mumsnet.com/Talk/conception/1348773-TTC-pregnancy-on-Prednisolone-or-similar-part-3

Part 2 here www.mumsnet.com/Talk/conception/1323594-TTC-pregnancy-on-Prednisolone-or-similar-part-2

Part 1 here www.mumsnet.com/Talk/conception/1236324-TTC-pregnancy-on-Prednisolone-or-similar

mollie I'm doing ok. actually very calm and trying not to focus to much on being pregnant. just want to wait and see what the out come of my scan is first. I've left it on the 29th as there's a good chance ill be 6+4 then. I decided that my pregnant lines were too dark for me to have tested as early as I thought I might have, iyswim. slightly risky I know but not sure I could wait much longer. if I take my lmp and go with a normal 28day cycle I was 5wks on sat. I was a bit sickly last time so I hope that kicks in again soon!

mollieboo Mon 20-May-13 09:44:20

Good stuff cartoon, calm sounds good! I saw a hb at 6w3d so hopefully your dates are right and it'll be a good time to go. It feels like the longest wait doesn't it for first scan.

freelancegirl Mon 20-May-13 09:54:00

Calm sounds good. Funnily enough I felt quite good on the Hydroxy. I felt that it suppressed some of the appetite I had had with the Pred and that was only a good thing!

such a long wait! I'm find it strange that I feel so ok about it this time. I guess you almost get used to it a bit, sadly. I'm slightly nervous of a blighted ovum this time. I may have already given my body time to attack it by starting late on my meds. Louise didn't seem to worried but I suppose she's not going to though is she.

I wonder if Mr s would've changed mine to hydroxy if I'd seen him first.

Mel3062 Mon 20-May-13 10:11:37

Thanks ladies that's a question I ask when I see him!

mollieboo Mon 20-May-13 16:06:18

Cartoon I know the feeling, I'm feel a bit numb this time, my mind is protecting me in case it all goes wrong again, it is sad that we have to be that way. You started pred at bfp did you? I totally understand why you're worried but I think other ladies on here have done that through choice, and some docs do it that way too I think, start pred at bfp.

jass43 Mon 20-May-13 16:17:00

Me numb too. (Lost last one at 7 weeks and instadiffed at cycle 0, so 11dpo now). Am avoiding further testing until days it started to go wrong last time, meaning at 20dpo. So far eating pred, using progesterone suppositories and even keeping up with my running schedule, apart from interval training. Feels better this way. I have no particular hope this time as treatment is the same as last time, but am hanging on to the fact that last might have been a blighted ovum for genetic reasons and also that since I am only about 5 weeks since I stopped pred last time my immune system might still feel the effects and be unable to kill this bud. Pitiful to hope, but I really have to, even if numb.....

Good luck to all those currently going through this I trimester hopeful agony and apologies to those who would probaly happily like to change place with us for moaning about pregnancy related worries......

mollieboo Mon 20-May-13 16:43:58

Hi jass, my last mc in March was a blighted ovum too. Good luck with this time too.

yes Mollie I started at bfp. last time was from ovulation, which Louise said was the crucial time. but knowing other ladies have also started at bfp makes me feel calmer about it. really at the end if the day these meds can help but they aren't a guarantee and I've sort of accepted that.

BellyD Tue 21-May-13 10:34:26

Hi Tumtimes sorry that you find yourself here, but I can see everyone has given you lots of useful advice. I, like Ari, am homozygous for MTHFR and so take 5mg of folic acid a day, recently supplemented by vit b6 and vitb12 to help absorption. I was under Mr S and like Ari asked him to put me on clexane for my last pregnancy. Sadly no joy, but I was subsequently tested for polymorphism of PA1 gene under George Ndukwe at Zita West, which I also tested positive for. This is another clotting gene mutation that definitely needs to be treated with clexane. This test is part of the standard rmc investigations in the US, but I wasn't given it until after my 6th mc when I truly thought I had had every test under the sun and I have only used clexane for 2 of my pregnancies. The reason for telling you this is to a) recommend the high dose folic acid, b) clexane is fine to take alongside the other immune meds c) might be worth asking Dr Gorgy to test your PA1 gene (we went to see him and this wasn't a test we were offered). You can also have a blood test to see if your body is metabolising the folic acid. That might be worth getting done too. I hope I haven't added to your stress but it is better to find out these things as early in your journey as possible so hopefully you will have a positive outcome sooner.

Abney looking forward to hearing your news, best of luck with everything.

Cartoon try not to stress about the holiday and enjoy yourself as much as poss, at the very least you will be topping up your Vit D levels!

Mel so sorry to hear about your chickenpox, how awful. I still think we could do these immune docs a massive favour by collating all our jobs into a list as there def seems to be a disproportionate amount of teachers (like you and I) and healthcare professionals who obviously develop super immune systems through coming in to contact with so many germs all the time.

Waves to everyone else. Ari going to post you a message on SO/ivfers thread!

Tumtimes1 Tue 21-May-13 11:58:55

Hey BellyD! Thanks so much for that information - so useful! I have my Gorgy appointment 2 weeks tomorrow. I will ask about both tests youi recomend! I have been prescribed the 5mg folic and will start this tomorrow.
Tomorrow I also start on day one of my predisolone at 25mg. I saw my GP today and she said she was fine with me taking it. Thank you all once again, will keep you posted and will be following all of your stories xx

buzzybee123 Wed 22-May-13 18:01:19

hello ladies I went to see Shehata today and I cannot say it went well hmm

So I go in to see Shehata I then explain to him that since I saw him in Aug 2012, I went to Create had a Fertility MOT and decided that the best option was DEIVF and now I was pregnant, well the first thing he said was why did you go to Create then he asked why I chose DE over my own and that your AMH means nothing and that he has a patient who has a lower AMH than me who is now 8 weeks pregnant!! I am like shock angry then he went on, when did I start taking the meds, so I told him, he said that was correct and that I should have spoken to him before as he has a protocol for immunes and IVF and that I should have had blood thinners. At this stage he very begrudgingly said congrats, grilled me some more and then assumed that I would have all my scans with him, I reminded him that I am under his NHS recurrent miscarriage clinic.

I did feel like saying well I would have seen you before I went to Brno but you are always on holiday at my expense hmm

sorry for the moan I think I'm still in a bit of shock about his behaviour and needed to vent

hope all is well with you all

duggs1976 Wed 22-May-13 18:27:36

Buzzy sorry to hear that and you are far from alone as you know from the super ov soon to become IVF thread! Unless you are one of the ones who gets pg pretty quickly or simply have top line immune issues he isn't really the best consultant in quite a few of our experiences! He is not open to other factors poo poooed the sperm DNA fragmentation tests, CGH tests, even my TSH thyroid level and anything his clinic doesn't cover. Please don't take to heart. I've been struggling to conceive for 2 yrs now since seeing him and was pg 3 times before that in 18 mths and I was 34 then and apart from spending £210 x 9 times each month to have a scan and not much else so be strong - you are pregnant and is disgusting the flippant way he treated you after all you've gone through and achieved. I'm only back there for the gonal F drugs but as sue said she's found someone else so that has helped me decide even the drugs aren't worth that arrogance. Fuming on your behalf. confused I hope u r ok?

duggs1976 Wed 22-May-13 18:32:39

I must add when he tried to push the Humira test on me I had no choice to tell him I had had it 8 mths before with dr Gorgy! He nearly went scarlet. I didn't bother to add - well catch up then and perhaps I could have saved 8 mths not knowing about it. He told me the most successful people are ones who stick to him and him alone and don't ask to look further. I didn't ask how many of those successful people waited 2 yrs taking pred with nothing to show. Probably get more storied like this from super ov thread as most are long timers there.

buzzybee123 Wed 22-May-13 18:57:20

I was a bit shocked by his behaviour, I shouldn't have mentioned Create but i knew he would ask me why I had decided on DE over my own, If I could get my intralipids else where I would, I'm also a bit concerned about the few pink spots I've had since going to the loo sad

thank yo for your support ladies

Mel3062 Wed 22-May-13 19:52:01

Aw buzzy sorry you've had a bad day but good for you standing up for yourself, we ladies have to seek all the help we can get!
Hope you're ok xx

Arianrhod Wed 22-May-13 21:06:30

buzzy You can - get Create to give you the prescription for intralipids and then go to INS to both get them supplied and administered. For £250 cheaper than New Life will charge you too. It's what I'm doing, and I know several other ladies who do this too. I'm so sorry to hear you encountered this reaction from Mr S, and I must say I'm surprised. OH and I have talked about it and since we're now not following Mr S's IVF protocol we're not going to remain under his care (partly due to the cost). I do like Mr S and respect him and his work, but I do wish to goodness he would be more open to other things and opinions - and he just plain shouldn't have treated you in that way.

buzzybee123 Wed 22-May-13 22:18:54

I only went and had a fertility MOT at Create we didn't discuss immunes, I'll email them and see but to be honest I wasn't keen on them, If i have to go to NLC for intralipids to keep this pregnancy then so be it, I was surprised by his behaviour and it certainly has changed my opinion, I'll send him a letter and see what happes

how are you doing ari

Arianrhod Thu 23-May-13 08:33:23

buzzy PMd you .. sorry, I meant ask your own IVF clinic, not Create. Got my wires crossed!

Tumtimes1 Thu 23-May-13 09:30:37

Hi everyone how are you all? I'm just messaging to ask this who have taken prednisolone at 25mg what side effects if any you've encountered? I'm on day 2 of taking the prednisolone (2dpo) and I'm wondering what's "normal" side effects. Thank you so much in advance xx

duggs1976 Thu 23-May-13 09:32:31

Ari sorry for my ignorance but what is INS ? Tried to google and got lots of blaaa... I'd like to find somewhere cheaper to have them if poss?

Arianrhod Thu 23-May-13 09:40:43

Independent Nursing Services, Devonshire St (off Harley St) duggs.

tumtimes Side effects vary from person to person, but for me, chronic insomnia issues (make sure you take it very first thing, but that still didn't help me) and a 'wired', 'buzzy', sort of 'jittery' feeling. Some people get very hungry on pred, others get bloating, some get spots. Everyone's different smile

TheAccidentalExhibitionist Thu 23-May-13 10:01:10

Tumtimes in my first month of Pred I had terrible UTI pain. My local lab tested my urine and there wasn't any infection in it. I also was slow to empty my bladder and had slight urinary incontinence.
Aside from that, your skin will definitely thin so you'll bruise and cut more easily. Yes to the insomnia and my heart beat changed too.

I find the effects of the Pred last for 10 days after I've stopped taking it.

Pred is serious stuff, we shouldn't be taking it lightly. I'm worried that I'm taking this awful stuff every month and not getting pregnant.

Tumtimes1 Thu 23-May-13 10:39:13

Yeah i agree - I am a little worried having looked at all the side effects online but I feel like I have no choice but to take it. Especially if it means me getting a live baby xx
accidentalexhibitionist what changes did you note on your heart beat? xx

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