Who's taking Prednisoline now?

[oinker]

I am probably going to self medicate with steroids as I have been refused it thru the hospital cos of my BMI. They won't consider me even though I have taken them before for a skin condition... I never had side effects before so don't beleive I will get them if I medicate

Will be going to Liverpool Womens hospital for the NK cell test and will be reviewed by Siobhan Quenby. Hopefully will be seeing her next week. I should ovulate any day now. Once I have the results from that i will decide what to do..... I spoke to my GP today who did a mini medical on me. i asked what side effects she would expect me to have if I took steroids. I told her about 20mg. She told me her patients take between 30 and 40mg for asthma. Apparently she would expect my side effects to be minimal and not dangerous. She mentioned nauseau and weight gain. She said I would need to be on it for a long while before the excess hair symptoms took effect. I am confidant I will be OK. I will go to my GP whilst on it for BP checks.... I may even exagerate urine pain so they check it for me.....
I now Dr Shehata will probably do it but I will have to wait at least 2 mths for an appointment....i feel as though I have wasted enough time... I have done loads of research on internet and by asking Docs and Prof advice (hyperthetically of course ) They have volunteered the info. when questioned....They're not stupid they must realise what I am planning to do.... On both occassions I sat there with a note pad making notes..... THIS IS A MISSION !!!!!

Good for you my lovely, don't blame you, sounds like you have a good plan there. If possible though make sure you have as many tests for as much stuff as you can so that you can be treated for everything in one go, hopefully this will give you the best chance for that successful pregancy. Lots of luck. x

I went to Liverpool Womens Hospital last week.
Had the NK cell test done eventually. The doc I spoke with basically said that I could not go on their trial as I already had a cuase for my m/c's. Hubby was bit taken aback by this comment. He surprised me and challenged her. He basically asked why the NK cells couldn't be a contributory factor? I explained that I had gone there just for the test and not to go on the trial. This seemed to confuse her Anyway, I told her a few home truths. I think they are living in some kind of bubble up there in Liverpool. They were shocked when I told them that the steroid treatment was being used in London and that St Marys were not even testing people for the NK cells and prescribing it just in case. They seem to think they are the only clinic dealing with NK cells... I asked about the trial and how many people were on it now. It started in August and they only have 2 women on it....Hardly surprising!!
Anyways, I have to wait 6 weeks for result...
Not sure what I will be doing until I get the results...

Hi Oinker, following this with interest as I have just had my 4th m/c and would like to see Dr Shehata for NK cells analysis. Have had karyotyping tests done, clotting, scan of uterus......yaddah yaddah. Hope you get some answers.

Hi ladylush
I am currently under Mr Shehata following my mc's (3mmc and 1 chemical) and happy to answer any questions you have about him and his treatment. Sorry to hear about your mc's. x

Hi Shaz, thanks. I am a bit sceptical now, as have heard that he diagnoses everyone with NK cells. What's your impression of him? And if you don't mind telling me, why are you seeing him?

Doh - sorry (brain still a bit funny after GA). I now see that you have had 3 mc. Sorry to hear that

Followinig a natural pregnancy which ended at 23 weeks due to potters syndrome (kidneys didn't develop), I went on to have a number of early m/c's/biochems and two rounds of IVF which both ended in m/c. I then was referred to CARE at Nottingham where I saw a consultant called George Nuduke. The upshot was that as well as elevated NK cell activity, DH and I also share antigens and I do not produce the blocking antibodies which stop my body rejecting the embryo. We had another round of IVF at CARE with various types of drugs - prednisolone 25mg, clexane 40mg, oestradial, utrogestan, 3x IVIG infusions (also another treatment available called LIT which may be worth looking into). We are now the very proud parents of twin girls, and I truly believe that without all the drugs this would never have happened.

I had very few side effects from the steriod - a bit of insomnia, some facial hair growth at about 12 weeks and a greater appetite. The facial hair disappeared a few weeks after I stopped taking the drug. Was on it until about 16 weeks and on the clexane until the night before the girls were born.

Since the girls were born in July 2007 I have had two further early m/c's. I often wonder if I had been taking the drugs again would I have carried the pregnancys to term but my GP will not perscribe the drugs before I find out I am pregnant - only prescribed to maintain a pregnancy and by that stage it is too late.

Sorry this is a bit long winded, but what I am trying to say is never give up. There are so many different drugs, treatments etc out there that something will work eventually.

Good Luck to everyone.

I am really hoping my NK cells are high... I have to wait until the end of december...

Thanks for all the messages and for keeping this thread alive....

All info is of great help and encouragement.

I suppose it will be good to know that something is wrong and something can be done about it. I did hear some dodgy stuff about Dr S though.

rEALLY, lIKE WHAT?

TO BE HONEST I HAVE ONLY READ ABOUT HIM BECAUSE OF THIS THREAD. I DID CHECK OUT HIS WEBSITE.
MIND YOU, I RECKON THESE DOCTORS ARE ALL SLIGHTLY DODGEY. AS ANY ORGANISATION THEIR RESULTS COUNT AND ARE PART OF A BIGGER PICTURE.

Well, sad news from me. I got my test results from Liverpool. My NK cells are only 1% high. The danger mark starts at 5%+.
This was my last chance. I spent the whole of last night just crying. WHY? Why is this happening?
I will never have my own baby. It pains me to say it. I have to be realistic. I can't keep going on and on and on. It's not fair on me or DH. He is really upset too.
LIFE IS SO F*ING CRUEL.

Oh Oinker.....am so sorry I know that feeling when you wish they would find something wrong In answer to your question I am a bit hesitant to post on here but what I heard had nothing to do with NK cells. It was very serious.

Hi Oinker, i really feel for you as it's sooo hard isn't it. I am now waiting for appointment at CARE at Nottingham for the chicago level 2 tests (only ARGC and CARE do these) whereby they are sent to usa where Dr Beer (rip) identified the immune issues himself. Would it worth you thinking about doing this i wonder to get more accurate and indepth tests carried out? Also Oinker when they test for nkcells at Notts they also cover th1 and th2 etc... so many things are looked at.

I see Mr Shehata and nothing ever untoward has happened (he is kind and listens to my needs/questions), perhaps ladylush would let us all known if there is something to be aware of please otherwise it leaves people worrying. Is it something that has happened to you or something that you've heard via third party?
Takecare everyone
sueXXX.

Hi Joyfuleyes
I was just wondering if the steroids worked for you? I have a high NK cells and will e put on prednisolone as soon as I get pregnant but don't know anyone who has been through this.
Thank you

Hi Alfino
Don't know if this helps but I took part in a randomised control trial of Pred against placebo for the prevention of recurrent miscarriage at LWH.
I have had 6 MC.
Normally we have MC around 5-6 weeks so by the time we're scanned it has already gone wrong.
I started taking either Pred or placebo as soon as we found out I was pregnant (1 day after BFP, so early)
It was a blind trial so we can't be 100% sure if I took the steriods but we got to 10 weeks and saw a heart beat at 2 scans.

Sadly we lost our Bean 2 weeks ago and it's thought it was due to a fetal abnormality and not u(NK) cells so nothing could have been done and it was "just bad luck" for this preg
The Consultant is investigating on our behalf and and I have asked my GP to find out if I was on the Pred so we'll know for sure.

As I took part in the trial I will definately be given the active drug as soon as I get my next BFP so fingers crossed, we will go the distance.
I know our story isn't exactly successful now but I'm confident that with the help of Prednisolone our next pregnancy will be, and our run of "bad luck(?!?)" will be cured.

Good luck and don't give up, keep me updated on how you're doing. xx

Hi Alfino
I had 4 m/cs and was found to have elevated NK cells and took 25mg prednisolone for 12 weeks for my successful pregnancy which I had in 2008. I am convinced it was the steroids as I felt my body respond differently to the pregnancy. That said, just took them again from a BFP and miscarried at 6 weeks. Am now allowed to take from ovulation for two cycles.... fingers crossed. My weight is a bit high (about 1 stone over) and I feel GROSS on the steroids, all inflated and racing heart so I would not take willy nilly, that said, if you have high NK cells they do suppress them and make the uterus more welcoming - give it a go and I hope your miracle happens xx

I have had four consecutive early losses and have looked into this stuff like other ladies on this thread.

It is a controversial area. There is some useful information at: www.hfea.gov.uk/fertility-treatment-options-reproductive-immunology.html

The HFEA website also lists some papers on the subject.

The trial in Liverpool have strict criteria - I was rejected as they had found another potential problem that COULD (but may not) be causing my losses.I think that this is the only place in the UK offering a uterine biopsy test for the cells.

Other places just do blood tests, which both my NHS and private specialists described as "worthless". It doesn't help that the doctors disagree!

I know how hard it is and how much I want to believe / try anything that could help, but I also think that there is a risk of being exploited / taking meds that have side-effects for both me and the fetus. I am particularly dubious about the "chicago" tests that cost a fortune.

Re. self-prescribing, please be v.careful! Also, you will be asked when you have early scans what medication you are taking, not a good plan to lie.