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Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

999 replies

Seekingmiracles · 13/05/2016 20:48

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies! Smile

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fourleafclover82 · 09/06/2016 10:29

Welcome Casopeia but sorry to hear of all your losses. I am also seeing Dr Shehata and am currently 8 weeks pregnant. I am following his high NK cell plan, but like you, I was just borderline so he didn't bother with the intralipids for me. I had my 8 week scan yesterday and it was so very stressful the buildup to it. So I understand very well all the emotions you are feeling. When is your scan?!

I said to dr S yesterday that I preferred to have my 10 and 12 week scans somewhere locally ( as finding the 5 hour round trip to Epsom not very convenient) however he told me that he wouldn't prescribe the pred and cyclogest if I didn't go to him every 2 weeks. This has upset me a little and the costs are getting so high.

I'm really hoping I can convince my Gp next week to start prescribing the pred and cyclogest to save all my trips to Epsom.

Have any of you lovely ladies managed to switch over to nhs?!

Xxx

karryk · 09/06/2016 11:02

Welcome, casiopeia :)

Hello to everyone else - hope you're all well!

Planning to start cycle 3 of the prednisolone this weekend. Here's hoping!

Did anyone else get a flare up of acne inbetween steroid cycles? I look like a hormonal teenager at the moment Confused

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Tumtimes1 · 09/06/2016 12:58

Hi there Fourleaf I transitioned from Mr S to NHS for the same reason. I moved over at 8 weeks and the reason being because I had my GP refer me to a pregnancy specialist given my previous pregnancies had ended in MC. This means that the pregnancy would need to be consultant led (not just mid wives). It was this consultant who prescribed the cyclogest and the prednisolone.

He also put me in for biweekly scans until I was 13 weeks. I would push to do the same if you can - a 5 hour round trip seems v stressful to me. Really glad all was well at your scan! xx

Tumtimes1 · 09/06/2016 12:59

When I told Mr S I was moving over to NHS he was fine about it - if a little flippant but hey ho saved me a fortune and on the same protocol. x

cartoontrickster · 09/06/2016 16:05

Hi ladies been meaning to update! I'm currently 10.5wks pregnant with my 2nd. All seems to be going well so far, I have another scan on Monday.
I cannot wait to be off the pred my appetite is ridiculous! I don't remember being so hungry last time. Has anyone else been like this??

Seekingmiracles · 09/06/2016 16:10

God I wish my GP would be more open to DrS' protocol! They've all been so dismissive of steroid use!
Glad your scan went well fourleaf 

Caseopia - sorry for your losses. My results were 12%, not sure of activation. I was on the high protocol along with fragmin for a blood clotting issue. Congratulations on this pregnancy. I had very few symptoms, try not to worry about that. Good luck. I'm sure all will be well Smile

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Tumtimes1 · 09/06/2016 16:38

Congratulations Cartoontrickster when did you have your first? I recognise your name x

cartoontrickster · 09/06/2016 18:06

My gp is the same seeking
Tum I recognize your name too. Ds is nearly 2and ahalf

Seekingmiracles · 09/06/2016 18:58

Congrats cartoon, missed your post! Nearly there now! My appetite was absolutely RIDICULOUS!! Thankfully it's back to normal now!

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casiopeia · 10/06/2016 07:41

Tumtimes1 my number seems just a bit higher that borderline, so I am in intralipids too, well, I don't mind if it is to help me. Thank you for the encouragement and congratulations on your baby and on you pregnancy, what a lovely positive story! How are you feeling, are you by now off all medication or do you still take some of it?

Fourleafclover82 I am right behind you with just over 7 weeks, very glad your scan went well last week, the wait is so nerve-wracking! I am also an '82 girl, if that what you meant by it in you nickname.
5 hour round trip sounds exhausting,it is 3 hours for me and just about as much as I find acceptable, it is tiring. Fingers crossed you can transfer to NHS. My GP is not supportive at all, but is prescribing the cyclogest for me as this was directed by an NHS consultant after my 3rd MC. I am taking Pred from Epsom though, GP wouldn't hear of it.

karryk all my fingers and toes crossed for you- keep us updated. And re the acne, my face cleared up as soon as I started pred, so I can only imagine my face will explode with spots once I am off it!

Cartoontrickster I do feel ravenous at times, but it always comes unexpectedly, one minute I am not hungry, and a minute later I am starved and just have to eat. Trying to manage the eating patterns and put lots of 'good' food in my stomach as I have been having trouble with constipation BlushBlush ever since starting prednisolone. Are you seeing DrS on Monday? I am seeing a colleague of his next week, I was told DrS is out of town.

Seekingmiracles thank you for the reassurance, I was an obsessive symptom spotter and I did have very strong early symptoms with my previous pregnancies, from even before the BFP, it is so different this time round, so I hope that's a good sign.
You are right most GPs are not happy about steroid use. I struggled to have him prescribe me cyclogest, even though he received a letter instructing him to do so, from the consultant he sent me to see. I got a right lecture on how cyclogest is very expensive and basically it is a 'treat', not usually given, and he will be prescribing it two weeks at the time instead of 8week supply in one go, in case I miscarry and I don't need all of it, otherwise he would have trouble justifying the prescriptions to his superiors. At just 4 weeks pregnant and very vulnerable I flipped out and broke down crying, so rude and insensitive. He could have just said that it was 2 weeks supply at the time and did not have to elaborate Confused

casiopeia · 10/06/2016 07:48

Sorry about the typos, I am writing from my phone and trying to say it all at once Smile

*higher than
*on intralipids
*that is what you meant
(and all the rest)

fourleafclover82 · 10/06/2016 09:41

Hi Caseopeia, yes I'm indeed an 82! Hope your next scan goes well. Hand holding from me. Great that you atleast managed to get the cyclogest from your Gp. It's a start! I just really hope that I can persuade mine next week to free up all these trips to Epsom. I had booked in for the next scans at the fetal medicine centre as it's much closer for me and they are meant to be very thorough and cheaper than going to Epsom. Just really hope I don't have to cancel them and make the trip back to dr S. I'm super grateful for being diagnosed but just wish it was a bit easier to transfer back to nhs.

annaif · 10/06/2016 10:31

What an insensitive thing to say to you casiopeia, I would have flippin' lost it if I were you! I cannot believe the stuff we have to endure/hear from all the so called medically trained professionals during this RMC crap....it's shocking, some people should not be allowed to deal with vulnerable patients....

Just as an update, I got my second BFN this morning, have only been actively trying for 2 cycles now and on the pred/progesterone cocktail during the cycle, so I was not holding my breath about it tbh.
Seeing it as a way of giving more time for my thyroid to settle and my endometrium lining to prepare for a hopefully successful future pregnancy (here's hoping!)

Off to see Dr Thum at the Lister this noon, as the Epsom trek also put me off visiting Shehata for continuous monitoring. Hopefully he'll accept all my previous tests results and agree to prescribe the meds that I need.

Hope you're all having a good week
xx

cartoontrickster · 10/06/2016 12:00

casiopeia what an awful gp! A little sensitivity wouldn't go a miss.
It is the colleague I'm seeing on Monday. Mr s is off to watch some football in France I think.
I cannot wait to start weaning off the pref, not long now and hopefully I can gain control of my appetite again. I've gained far too much weight!

Tumtimes1 · 10/06/2016 13:56

Hi casiopeia what a horrid GP. I am off all meds now except baby asprin and clexane. I was V glad to get off the pred as it gave me BAD insomnia.

Hiya Annaif I'm sorry you got a BFN this morning - that sucks. How many dpo are you? x

Seekingmiracles · 10/06/2016 14:52

Caseopia - I had a melt down at GP because they made such a faff of getting me my first NHS scan, cyclogest and fragmin - again despite having letters from my consultant instructing them to do so! In the end I broke down, let rip and they sorted it out for me! Idiots! It's so frustrating when the health professionals we trust seem to little to no empathy.

Good luck with Dr Thum Anna- sorry it was a bfn today Sad

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See33 · 11/06/2016 19:21

Totally crap GP! So insensitive. Mine refused to prescribe anything from the start so I have been travelling to coventry three times to get repeat prescriptions, each miscarriage/preg. It was all getting too much hence why I asked to be referred to Dr S at Epsom. I will have same problem though as he will ask GP to prescribe. I asked a private GP at City doc in London (during my sons injections) if they would prescribe and they said no problem. £55 plus prescription cost.

Also both predisolone and cyclogest are cheap drugs ! That's why they use cyclogest over other forms of progesterone.

I had the same issue with sickness drugs in last preg. They see a preg women and just do not want to be the one responsible for prescribing the drug in case there is any fetal danger that they don't know about yet. It's all post thlamidomide.

I think i will have to go to private GP as fed up Fighting systems to get the support I need.

See33 · 11/06/2016 19:25

Can anyone PM me Dr S protocols for different treatments/levels of NKC. I am with NHS so I will not have access to this on his private site.
If he has a clotting problem does he prescribe clexane/fragmin from BFP or from scan confirming its not ectopic (like they do in coventry). ?

See33 · 11/06/2016 19:34

Already had two predisolone pregs / miscarriages so want to make sure armed with info of other treatments /protocol options when I see him on NHS. As Not sure if he offers same treatment on NHS as private.

Seekingmiracles · 11/06/2016 21:22

I haven't got all the protocols, I can't remember the password for the website.
But I was diagnosed with a clotting factor via NHS but they will only prescribe from scan, DrS said that it's absolutely ludicrous as by that time I could lose the pregnancy. So i made sure I had 2 weeks ish of clexane from DrS for use as soon as I got a bfp then got my fragmin at the first scan. I'm now having the same battle for the end of the pregnancy - NHS want to stop it at 36 weeks, DrS recommended until the end. Hmm

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See33 · 11/06/2016 22:09

Congrats, seeking, on being near end of preg, that's great news. I hope you can just carry on with the treatment. I thought that he would advice to take earlier as with his immune treatment. I was told from scan but never taken it. So was just wondering. Have it in cupboard- it's really big : )

karryk · 12/06/2016 09:09

Hello all :)

Just popping by...in the middle of fw at the moment!

I went to see my gp earlier this week and for once she was surprisingly helpful Confused she said not to lose hope in getting pregnant on the current regime with Mr S but that she'd start on a referral for me to the Homerton for ivf consideration in any case. Dh is quite apprehensive about going down that route but I've managed to persuade him to see his gp to start the process on that side.

I get my ovarian reserve test results in Monday from Epsom Shock I want to know but I don't! Wink

Wishing you all a lovely Sunday - hopefully the sun turns up..lol

Xx

See33 · 12/06/2016 14:49

That's good the GP up for referring you to Homerton. My friend was there for IVF and said they were good. Hope hubby can keep treating along the path if that's what you decide to do. Hope ovarian reserve tests ok Smile

karryk · 12/06/2016 16:01

Thanks See33 :) x

karryk · 14/06/2016 13:32

Ovarian reserve tests etc came back fine...phew!

Just about to exit fertile week now so am on the preds for cycle 3 and about to start the 2ww!

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