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Questions and Information on Immune Issues Specific to Serum in Athens Part 2

167K views 1K replies 128 participants last post by  Greyhoundgal 
#1 ·
New home ladies, Please remember that it is always advisable to seek advice from your treatment provider.

Happy Chatting

Tracy
 
#602 ·
Thanks so much everyone for putting my mind at rest xxxxx I just need it delivered now!xxx
 
#603 ·
Re Neupogen, I asked and asked again  ;D and finally Penny said I'll have it next time. But she won't tell me when I'll start it or the dose till after AF. Is it normal?  :(
 
#604 ·
You should technically start it with the rest of your protocol so if you start from day 1 then ideally this is when you will start neupogen as well x
 
#605 ·
Hi folks...

Jumping in here... just got a BFN this morning following OE cycle at Serum... I am trying to get my head round what to do next, already decided last chance with my eggs given age, ... I have no immune issues that I know about however took the meds as instructed (Prednisolone) my question is for during the 2WW I started to feel as if I was catching a cold and the past 5 days have been pretty rough with severely swollen glands in my throat so much so it felt like having mumps!  Trying to plan ahead on what to next and wondered if anyone had any experience or knowledge if this is an indicator of immune issues or not?? 

Meikle x
 
#606 ·
I'm so sorry about your bfn. They do say if you have a sore throat around implantation time that is a sign of immune issues, when we used my eggs and dh sperm I never had sore throat etc but they were very poor embryos so pretty sure they arrested and didn't have a chance to try to implant. But I have had 2 dd cycles and had sore throat around implantation time soooo now trying neupogen on a very low dose and having a blood test next Wednesday and penny will adjust the meds accordingly to results.have you asked penny what she thinks? Xxxxxx
 
#607 ·
Hi Ladies,

I've got some testing done in the UK for recurrent mc and nk cells.

Some stuff came back negative such asGliadin antibodies (IgG and IgA) but seeing as I haven't eaten wheat or gluten for 2 years I'm not surprised. Also Factor II prothrombin mutation, Factor V leiden and MTHFR mutation were all negative.

The NK cells results were as follows:

NK Cells count
Lymphocete count [10^9/l] : 1.222
Total NK Cell Absolute count [10^6/l] : 141.9
[Lymphocytes] Total NK (%) : 11.6 %
Normal range (%) : Less than 10%

NK (dim) Absolute count [10^6/L] : 135.3
[Total NK] NK (dim) (%) : 95.4%
NK (bright) Absolute count [10^6/L] : 6.57
[Total NK] NK (bright) (%) : 4.6%

Results are OK for count apparently.

Activation Markers of NK Cells
Total NK CD69 Absolute count [10^6/L] :1.28 HIGH [<0.8 Normal, 0.8-0.99 Borderline, 1.0-1.8 High, >1.8 V high]
Total NK CD69 (%) : 0.90 %
Normal range (%) : less than 1%

NK (dim) CD69 Absolute count [10^6/L] : 0.32
[Total NK] NK (dim) (%) : 0.22%
NK (bright) Absolute count [10^6/L] : 0.96
[Total NK] NK (bright) (%) : 0.67%

NK Cell Cytotoxicity Assay
NK Cell 50:1 : 22% High - Greater than 20%
NK Cell 25:1 : 15%
NK Cell 12.5:1 : 11%
NK Cell 50:1 : w/IVIG 12.5mg/ml : 7 % Reduction in killing : 68%
NK Cell 50:1 : w/IVIG 6.25mg/ml : 11 % Reduction in killing : 50%
NK Cell 50:1 : w/Prednisolone 10mg/ml : 17 % Reduction in killing : 23%
NK Cell 50:1 : w/Prednisolone 5mg/ml : 19 % Reduction in killing : 14%
NK Cell 50:1 : w/Intrallipids 3mg/ml : 9 % Reduction in killing : 59%
NK Cell 50:1 : w/Intrallipids 1mg/mll : 17 % Reduction in killing : 23%

TH1/TH2 Cytokine Ratio
TNF-alpha: IL-4 [CD3+CD4+T-helper cells} : 21.5 [19.0 - 57.6]
TNF-gamma: IL-4 [CD3+CD4+T-helper cells} : 8.3 [8.8 - 21.0]
TNF-alpha: IL-10 [CD3+CD4+T-helper cells} : 32.6 [13.2 - 31.0] High
TNF-gamma: IL-10 [CD3+CD4+T-helper cells} : 12.7 [6.1 - 14.8]

Thyroid:
TSH : 2.19 mIU/L [0.27 - 4.2]
F T4 : 13.6 pmol/l [12.0 - 22.0]
F T3 : 3.7 pmol/L [3.1 - 6.8]
Prolactin 593 mIU/L [102 - 496]
Thyroglobulin AB : 11.8 IU/mL [0=115 negative]
Thyroid peroxide antibodies : 5.0 IU/mL [0 - 34]

I also got a positive on Anti-nuclear antibodies: Positive - Titre of 1:1280 (Fine speckled pattern). Anti-nuclear antibodies (fine speckled pattern) are associated with connective tissue disease. Suggest ENA testing.
Not sure what this means? I do have quite a few tendon issues - would this be linked somehow??

Any advise on the above would be appreciated!! Thank you!!!
 
#608 ·
slightly high killing power with slightly high activation marker and slightly high TNFa ratio.  all consistent with slight inflammation.

positive ANA may not mean you have any autoimmune symptoms although you have the tendency to autoimmune as something is going on under the surface.  they are are suggesting having an ENA panel because it might pinpoint which autoimmune disease you MIGHT have.  I THINK several different autoimmunes might give tendon issues but I'm not sure.

for the point of view of TTC, I'd expect your doc to treat for inflammatory pattern immunes - so fish oils/resveratrol possibly steroids, possibly NSAIDS pretreatment, then steroids, clex and ILS during tx
 
#609 ·
Thanks Agate for the reply. I already take resveratrol, fish oil, curcumin, pine bark extract etc!!! I'm on them to help my endo!!  Would the endo be causing the slight inflammation or is there something else going on do you think?

When I cycled back in jan at Serum I took 10 mg  pred, intralipid, clexane and Celebrex but still had a mc? The UK doc who did the testing is recommending 2 shots of Humira followed by higher doses of pred (25mg) and more intralipids (I only had one before) on my next cycle. Have sent my results over to Penny to see what she says.

The uk doc isn't going to do the ENA panel so I'm going to go  to my gp to see if I can get a referral ( not sure  what specialism?) as there is a lot of auto immune diseases in my family -  mainly RA but also 1 MS.  My tendon issues are also getting worse so want to see what my gp can suggest for this too.
 
#610 ·
rheumatologist?
low grade autoimmune mixed connective tissue disease?

if your tendonitis continued to get worse even when you were taking those meds, it suggests they didn't work... so logically you need to try something else... seems to me a rheumatologist might help work that out or at least px some stuff to try if he can diagnose an autoimmune something or other causing it?
 
#611 ·
Thanks Agate. Penny had pretty much said the same thing re seeing a rheumatologist. Just need to see if I can get a referral from my gp.
 
#612 ·
I'm hoping someone can help with my question on this med

Penny's emailed programme said I'd need 'gcsf 60iu'

The emailed script (v hard to read), said 'Neopogen 300mcg 0.5ml X injections (use as directed)'

The vials Dh collected from pharmacy yesterday say in the label ', Neupogen 30 mu (0.3mg/ml) ....1ml

I don't understand these differing measurements, and haven't a clue what to do now, can anyone help?

Thanks
Gramercy
 
#613 ·
300mcg/ml is the same thing as 0.3mg/ml.

I'm not sure about needing 60 IU though.  maybe its supposed to be 60mcg... which is 0.2mls or 20 units on an insulin syringe.... that'd be a standardish dose for someone who is not v v chunky.

you could ask dimitra tomorrow?
 
#614 ·
Question for Agate or anyone else who might be able to help.

Had my chicargos done 18 months ago and NKs were all on the low limit on normal 10 (50:1) 5 (25:1) and 1.3 (25.1) with intrallipid they dropped to 4.7 (50:1) and 1.5 (25:1). Anyway Gorgy had me on high pred and intrallipids but I never got bfp with this combination.

Only bfp I ever had was when the only immunes I took were neupogen but it was a chemical sadly.

Penny has me on neupogen and 10mg pred do you think I should avoid doing an intrallipid as it could reduce my nks too low? I think dr g and penny have said intrallipid can't hurt but wondering if you don't really have an nk problem can it over suppress?

Thanks
Conker
 
#616 ·
Morning;

just jumping in for some advice.  Just finished a failed own egg cycle @ serum and had a phone consult with Penny this morning. In terms of feedback cycle was perfect as in 3 grade 1 balsts transferred. The issue being how unwell I felt 24hours after transfer and developed into swollen glands to the point it was painful to swallow food. Penny advising that given the fact I tested positive for most of the infection and had fairly major reconstruction work during hysto she wants me to cycle this month. We have decided to go donor route this time given my age. Penny indicating she would increase pred to between 20-30mg and also include intrallipids.... not sure what all that means but keen to get going. My question is about intrallipids a what are they really and realisitically I could be heading over to Athens next week for transfer... does this need to be done before transfer, am I pushing it to cycle this month??  Sorry for the me post but immunes a totally new experience for me and feel like I don't have a lot of time to catch up xxx
 
#617 ·
Intralipids are a milky suspension of fat in saline which is given by a drip.  You can do them easily at serum or if you get a prescription from serum there are a few options to have them done in the UK.  Its ideal to do the first one about a week before et but they might still help if you start them later.  There is more info in my FAQ under intralipid.  Its not completely clear how they do reduce NK cell activity but some theories are around the idea that pushing up the fats in your blood does something to reduce sugars or something but no one know for sure as yet. 
 
#618 ·
Agate thanks for replying, my cytokines were also fairly low, TNFa 17.1 and IFNg 8.9 so not sure why he put me on 25mg of pred.

I'm wondering if I should even be taking the 10mg of pred for this cycle, I'm on 60iu of neupogen but I am missing the 3 receptors that Dr G tests. Seems 10mg of pred is a fairly standard empirical dose but given I have actually tested my nks and tnfas maybe I shouldn't be on steroids.

I read that braverman has told some people not to take any steroids. I wonder if I fall in to that category given my low results on the chicargos.

I'd appreciate your thoughts Agate
Conker xx

 
#620 ·
Thanks Agate I appreciate your view, I'll have a chat with penny about it tomorrow as I tend to agree with you.

Xx

Update: I spoke to Penny and Dr M this afternoon and both agree that there is no need for me to take steroids or have intrallipids so I'm really glad I spoke to them. Really pleased with this decision so thanks again Agate as talking to you prompted me to question this with Penny x
 
#621 ·
Hi,
Just wanted to ask whether Serum test for NK's etc or do they still get sent off to the states?
If anyone can point me in the right direction that would be fab!
Thanks
J
 
#623 ·
Help, I need advice.  I am trying to get a follow up with the consultant after CVS confirmed Downs Syndrome - and subsequent loss.  One of the consultants is a specialist in immunes and I am not willing to accept that it was bad luck without doing research.  BUT looking back at my results my DQ Alpha was 0101, 0501 (and I think 0501 is really bad), and DH is 0301;0301. 

should I be considering LIT with my next cycle - which will be DE or does it matter as it is DE?  For this cycle I had neupogen, prixina, prednisolone, clexane, cyclacur and of utrogestan pessaries.  I don't want to bother Penny just yet with this so any advice appreciated.

 
#624 ·
Hello all,  does anyone know if its possible for blood to be too thin or steriods to cause miscarriage? Long story short we have had 4 miscarriages. We assumed the first two are related to a genetic condition. 2nd two were of healthy babies,  one pgs normal and one tested after erpc.  Also, pattern of the 2nd miscarriage is so similar to 4th that we are now questioning if that was a genetic issue or actually my stupid body. For miscarriages 2-4 I was on 40mg clexane. I have tested positive for mthfr  (hetro). Penny is going to double my clexane at transfer but now I'm worried my blood will be too thin.  Also I have gotten pregnant on ivf cycles 2, 3, 4, 6. On cycles 3, 4, 6 I was on 10mg pred, 1/2 mg dexamethasone and 25mg pred respectively. My CD19 or CD3 are always at either the higher end of normal or slightly high and get higher in pregnancy however my 1:50 etc are always in normal range. Penny has suggested increasing pred possibly up to 40mg this cycle and considering my longest pregnancy (just) was on  25mg pred), this seems to make sense. However we are also adding in gcsf (although I do have the kir indicators present) so I am now worried I'll be iver suppressed and won't get implantation.  Make sense?  Any words of wisdom really appreciated
Kb
 
#625 ·
KB
I am sorry about your MCs, and sorry I can't answer your question but there is a test called an anti-Xa test which I think helps determine if your clexane dose is ok, too high, too low.  I wasn't able to get it done in NI, then my consultant took over my care and didn't think it was necessary.  I'm 18 weeks and been on 40mg since start and will be all the way through (had stillborn baby at 22+2 due to clotting issues) so I hope he is right.  So far so good.
Anyway just thought I'd mention the test in case it might help.
Hopefully agate or someone more knowledgeable will be along soon to answer your questions.
Good luck
De x
 
#626 ·
Thank you so much DE, I will try and get it done. Sorry to hear about your still born baby, congrats on your current pregnancy xxx
 
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