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TTC or pregnancy on prednisolone or similar part 13

996 replies

VillageMum · 25/04/2014 20:30

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!

OP posts:
rb30 · 15/08/2014 12:54

Hi ladies I was wondering if I could join your group. I've been looking for a group who have undergone dr Shehatas treatment. I've started my treatment with doctor Shehata, who I must say is fantastic, and realistic. I finally know why I have lost my 4 angels. I've been diagnosed with high NK cells and high TNF. The first phase of the treatment was to treat the TNF with humira with 2 injections over course of 2 weeks. So I took my first injection on 30th July. I was due my second injection on Wednesday 13th August but had a hysterscopy/polypectomy on 12th August so have been told to hold off a few days. Anyway I have discovered 2 lymph nodes on my neck, one which has grown to about 17mm over the last week. I went to my GP yesterday explained that id been taking humira and the hysterscopy but he was really dismissive of them, and just told me to go back if it grows any bigger. Has anyone had any such reaction to humira before? I need to read the full thread back to see the success stories because I'm hoping there are for the cost and also just the emotional roller coaster this ttc is...it's so hard...losing the babies was the hardest thing I've had to go through (4 in 2 years, 6w, 14w, 6w and 11w - the 2 6w were normal mc and the 2 which I carried longer were mmc). I'm sure it's the same for everyone on here :-( sending baby dust to you all xxxx

cartoontrickster · 15/08/2014 16:18

hi en glad you found us. I've mc'd 3 times, once on treatment but due to a chromosome problem. I now have a 7month DS. I saw Mr s and was treated for v.high nk cells.

cartoontrickster · 15/08/2014 16:18

argh rb not en stupid auto correct

rb30 · 15/08/2014 16:25

Hi cartoon thanks for responding. Did you have any side effects to the treatment? Wasn't thinking about these things when I started treatment because finally had an answer but these lymphnodes have totally freaked me out as never hd them before and my research keeps taking me back to lymphoma!! I know google can be unnecessarily tmi - that's where I'm at.

cartoontrickster · 15/08/2014 16:37

well I didn't have humira. I took prednisolone and cyclogest along with the usual vits and asprin. but I wouldn't say I had any side effects from it perhaps a slight moon face but I gained a fair amout of weight anyway which may or may not have been because of the steroids, I can be a greedy piggy anyway!

Hopender · 16/08/2014 07:42

Thanks VillageMum! You must have been so happy when DD came along! I loved the year after DS arrived, well apart from the sleepless nights! I will post when I get my results back from Dr S. It is a weird inbetween time right now but at least we have found someone who isn't saying it is just bad luck!

Hi Rb30! I saw Dr S for the first time the other day and go back on September 8 for the results. He thinks I might have an immunological thing though. It is great to find another person starting treatment with him! Having your lymphnodes swell up must have freaked you out a bit but I'm sure if your GP was worried he would have taken action. Have you emailed Dr S? Maybe he could reassure you too. Have you had any other side effects?

freelancegirl · 17/08/2014 09:53

Welcome RB and hello to everyone else. I've not heard of anyone on this thread have those side effects RB and also know people who have taken Humira for other things. So maybe it is a desperate thing? Hope you get some answers. Mr S has also been amazing with me and I firmly believe without the treatment I wouldn't have my little boy.

I'm also dropping in to say I had my 20 week scan yesterday and all is well! Can't quite believe it. Obviously I will never relax but thank goodness those long first months are finally behind me. Hope everyone is well xx

Hopender · 17/08/2014 15:40

That is great news Free! You must be so happy. Hopefully you will be able to enjoy the rest of your pregnancy now. Not really that much longer until your little one is here!

Mel3062 · 17/08/2014 15:58

Huge congrats free.
I've had 4 injections of humira and can't recall the side effect hope you get some answers.
Well I'm back from hol so waving to all :)

LondonSuperTrooper · 17/08/2014 16:47

Hi, please can I join you? I've had 3 miscarriages & I attend Mr Shehata's clinic at Epsom. All my blood results came back fine apart from an elevated rheumatoid factor. I was told to just take baby aspirin, multi bit and vitamins.

After carrying out my own internet research, I contacted the clinic to say that there's a correlation between elevated rheumatoid factor and miscarriage. I was pushing for a treatment as we are going for IVF in a few months time. Only then, did the clinic say that they can prescribe steroids to calm my immune system down..... This is almost a year after I attended Mr S's clinic! Speaking of which, who actually sees Mr S himself? Every time I've been I get to see one of his team but never Mr S.

MrsPixieMoo · 17/08/2014 18:20

Free halfway! Well done you. I'm really pleased to read your news.

cartoontrickster · 17/08/2014 18:38

that's brilliant news free Thanks
London are you nhs or private. i was a private patient and always saw mr s. not saw if that makes a difference.

Hopender · 17/08/2014 19:33

We decided to go private too and saw Dr S. I'm not sure I would have got an NHS referral as we live in Scotland. I could be wrong though.

LondonSuperTrooper · 17/08/2014 21:31

I'm Surrey based & I've been refereed to him I GP- so it's the NHS route.

They said they'll prescribe fragmin for my IVF cycle. But humira & other medicines will have to be given via the private route..... I'm not even sure what humira is!

Mel3062 · 18/08/2014 10:49

Just a thought but for all you successful ladies out there it would be lovely to have a record of your treatment plans for us ladies to refer back to. Quite often I have to ask what plans you were all on as I've a useless memory!!

cartoontrickster · 18/08/2014 11:37

mel let's see if i can remember.
the usual pregnacare vits, vit B, asprin.
40mg prednisolone
daily cyclogest
omeprazole
intrapilid drips 4 weekly
up to 16wks.
i must point out though that i was not taking any vits or pred before bfp.

my total nk cell absolute count 163.3
activation total nk absolute count 2.21
so i dont have an overly high number but they are very active.
hope that helps.
free do you know the cost of having my nk cells retested?

Hopender · 18/08/2014 14:26

I was just wondering if anyone who was prescribed intralipid drips lived far away from London? I'm just wondering how this might work as I live in Edinburgh? I guess maybe I won't need them but it does worry me slightly. There aren't really any specialists like Dr S up here so I didn't have much choice but to come to London. It would be difficult to manage if I had to come a few days a week though.

Mel3062 · 18/08/2014 14:37

I live in York so have same prob. You can ask for a to be sent to healthcare at home who then come to you and administer them but I get the prescription and get the intralipids from a chemist in London by post then have a nurse privately administer them. More cost effective than me going to London each month!

Hopender · 18/08/2014 15:55

Thanks Mel. It is great to know there are options. I have a pretty understanding GP so I'm wondering if she might be able to get one of the nurses in the surgery to help out too. Do you start them after a BFP?

Mel3062 · 18/08/2014 16:10

I'm having one a month under dr g, it was on BFp with mr s. My gp is great I get all my meds through them apart from the intralipid and ivig when I need that.

Igggi · 18/08/2014 17:39

Great scan news Free!
Hopender we must be neighbours Grin
I didn't need intrallipids (can't even spell it!), you may not either. Think I had four trips to London in total. (Not trying for any more after ds2)

sunnyday01 · 19/08/2014 06:53

Hi everyone - welcome to the new faces too!

Having a bit of a nightmare this month, was due to start AF on 2nd August as was already with the letrazole for SO and then the steroids etc but period never arrived! Typical! The month where I could actually do so ethi g positive it decides not to do anything! Not had this before so hoping it's just hormonal and appears next month! I'm def not pregnant as we haven't tried forsbout3 months whilst seeing dr s.

For info my total count of nk cells was 648 and my activity level was about 1.2. I think. I have been prescribed steroids, progesterone and intralipids every 4 weeks to 16 weeks. I have also been given letrozole to help with ovulation and hopefully speed things up!

Triplespin · 19/08/2014 07:58

Sunnyday - ooh I hope AF arrives , I know it always happens when you are actually waiting for it!! Otherwise it is early lol.

Ladies quick preds question! I am weaning off it after my mmc but I forgot to take it this morning and now I am already on my way to work. I was meant to take 20mg today. If I take it this evening, then do I have to carry on every evening for the remaining time? How would it work?

Mel3062 · 19/08/2014 08:34

Sunny that's always the way hope she shows soon.
Triple- reading the pred leaflet it says if you forget at usual time take when remember then at usual time again so don't think it would matter when tgi took them though you may be up all night :/ never take 2 doses at same time. You could always just forget today's and continue tomorrow.

Mel3062 · 19/08/2014 08:35

You I ment not tgi?!