The steroid junkies' perfectly unscientific medical trial

[hopeful23456]

thanks pip!

fili - i dont think i have any side effects from it and i think it keeps morning sickness away (i've read they actually prescribe it somtimes for morning sickness)
- i'm just really tired and hungry all the time (the hunger could be side effect but could be preg hunger) i'm 5 weeks today. i don't mine the prednisone at all - maybe i'll miss taking it when i'm off of it I take it around noon each day as I've heard it can make you not sleep but I haven't found that to be the case either.

 

[filipenko32]

Really hoping this is it for you Hopeful! I will be stalking you! If you don't mind x x

 

[hopeful23456]

i love stalkers and am stalking you right back

 

[filipenko32]

Lee I really hope the following doesn't upset you. I was in 2 minds whether to post here but then I thought it might help others who read this post in the future. But just to warn you that the content may be a bit of a reminder of your recent news and upsetting you is the LAST thing I want to do






Well I am back from Dr S's and have a result. He has diagnosed me with very high NK cells. I am a little shocked to be honest. So he was about to send us on our way as we have been ttc and I have been following his steroid plan since ov (told him this & he wasn't pleased) - he said he can't treat us without test results and so we should come back next month & not ttc. So I said, "Well I had the test done after my second miscarriage so they may not be reliable but..." He snatched them out of my hand and immediately said just what you said Pip on this thread a few months ago when I typed up my results for you to analyse. He said that they were from the same company he uses called The Doctor's Lab and so he could rely on them. So 25mg steroids and intralipid treatment for me. Moving to 40mg when pregnant. Good job I started taking aspirin and the steroids 1 day after ov then! I am a little shocked tbh as I thought my problem would be mainly blood clotting. He said we couldn't have a successful pregnancy without steroids. He wasn't pleased that I managed to get a random clinic to do the NK cell test months ago with no doctor to supervise. But then I just watned everything tested and they weren't going to refuse the money obviously. I am a rebel, but I am secretly pleased I started my treatment myself and was proactive as now I am completely on track treatment-wise! Hope this works out or where else do we turn?

 

[filipenko32]

Hopeful do you follow Dr S's program?

 

[petitpas]

Filipenko, you rebel!
I'm glad you are being seen by Mr S now as steroids aren't harmless and really shouldn't be taken unsupervised. Crikey, you'll have fun with the higher dose
Fingers crossed you get a bfp soon and can use the new treatment to make yourself a sticky bubs fxfxfxfxfx

 

[filipenko32]

Thanks pip, yeah I want one like yours! Sticky!

 

[lexi374]

everyone, sorry to gatecrash hope you dont mind?!

I have had 3 miscarriages and have just had results from a uterine biopsy with Professor Quenby, she said NK cells are high at 10.2%, the upper end of normal is 5%.

I just wondered how high is high compared with others, and has anyone else followed her plan and had success?

 

[petitpas]

Hi Lexi, I'm on Mr Shehata's plan which has different test results so we can't compare like for like. Our treatment plans are very similar, though. I was on 25mg from ovulation. I think you will be on a similar dose from bfp?
Would you like me to add you to the list on the front page?

 

[filipenko32]

Hi Lexi! Me too (read above) mine were 12.7 %! I am on 25mg from ov + aspirin etc.

 

[lexi374]

I think she said 20 mg from bfp but will know more when i speak to her.

Thanks that would be great

Congrats on ducky by the way! Stalked this thread and recurrent miscarriage thread on and off for a while! x

 

[lexi374]

Fili! You with Mr s too?

I toyed between the 2 and went for Quenby in the end x

 

[filipenko32]

Oh no Lexi sorry I am on Doc S's plan but not sure how our results would compare as mine is blood...

 

[lexi374]

Thats ok

Anyone else been with Quenby? x

 

[filipenko32]

Lexi nice to see another familiar face on here! Did you ever have the chromosomes tested on your baby. I had them done for this last miscarriage and so that's what pointed me in the direction of immune problems.

 

[lexi374]

No not that i know of, i had an erpc with the 1st and 3rd but no one ever said anything to me.

Its only from spending hours on the internet that i read up on NK cells and immune problems. I have Crohn's disease which is an auto immune disease.

Most of the docs ive seen have been useless and just wanna give you the bad luck speach, im sick of hearing it! And im angry that i have to research and pay for tests myself to get answers! x

 

[filipenko32]

Yeah! I felt exactly the same way and did exactly the same thing. We really have to fight to get somewhere with these miscarriages don't we!? It's such a shame you couldn't have the treatment sooner

 

[petitpas]

Sorry to read you had a bit of a runaround, Lexi. I take it your local recurrent miscarriage clinic ran all the standard (not nkcell) tests but didn't find anything?

I am sure you are aware that Prof Quenby is running a trial to prove the effectiveness of steroids and nkcell testing? Hopefully, that will put the testing and treatment into the hands of the NHS
My three months of steroid pills are certainly much cheaper than another D&C!

 

[hopeful23456]

Hi fili- glad you got some answers! I am in the states so not on dr s plan but my re clinic puts you on pred and lov from bfp if you have rpl and they dont know why. Probably because there are some big clinics here that do that for rpl (dr beer for example)

I had nk cell blood test - my cd3-/cd16+cd56+ (%) is 11%. The test says normal range is 4-25%. BUT I read somewhere that the upper level of 25% is normal for cancer patients so who knows. That's why I don't believe the tests are really normal although they are in the "normal" range as they say.
I've also read that uterine biopsy nk cell test is better to determine the levels as focuses on uterus but who knows. If dr s does blood level test I would believe him.

Also my test was taken 11 days after my early m/c end of aug but my hcg was already way low- it went from 1155 to 256 two days later and my bloods were 11 days after that.

Here is a good website that lists out the tests and explains them too
www.labtestsonline.org

Just choose your test from the drop down menu on the right.

Found this on nk cells:

Secondly, the percentage of CD56+ NK cells in peripheral blood in normal healthy individuals varies from 5% to 29%.8 Despite this, a finding of more than 12% NK cells in women with infertility or miscarriage has been arbitrarily defined as abnormally raised and used as an indication for treatment.9 The percentage of NK cells in blood can be affected by many factors including sex, ethnicity, stress, and age, but there is no indication that concentrations in the upper end of the normal range are ever harmful.

 

[filipenko32]

Aww thanks hopeful, that's really interesting and kind of you.

Can anyone help! My next worry /question is does taking 25mg pred affect your cycles on a bfn cycle? So along with progesterone and prednis, if I wasn't pregnant this month, would I expect my period to start a little later than normal? Also does it take longer to get pregant whilst on steroids? Thanks!