Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)

[Bluebell14]

Agate,

Well i have   been pondering all of this for many months  now   as we are going to   start in March, I have high uNK cells 8%  (Siobhan   quenby) and high NKa (31%) 25%dq alpha match 1.4 allel,  Negative LAD,   TNF alpha 28, Factor V Leiden hetro i am guessing i am  in the olympic   team!        I have seen Dr S who only tests and treats NKcells with 40mg  steroid & intralipids. But i was thinking that this may only  solve half of the problem? and i still have a high risk of MC  without the LIT or humira? However Dr  claims to have 85% success  rate?!

Me and my boyf have come to the conclusion that we are  going to try the full   works   in order to get the best chance but i  keep thinking what if it   works ie   option 3 it could save us  thousands! Do we really need the LIT   do we   really need Humira?! as  my TNF is below 30 and i wouldn't want 2   risk   anything 2 increase it  would i? (flare) My NKs reduced from 31% to 7% with Intralipids and  about 20% with IVIG so i know i defo dont   want   that!


We want to TTC naturally but only have 1 tube left Dr Gorgy mentioned scanning the ovaries to ensure i was ovulating on correct side then administering meds but its all about timing do you know how long Humira lasts in the body? I know LIT is 6-9 months which gives us a realistic window of opportunity to conceive.

very very confused                                                                               

[FertilityFriends]

[Bettysjourney]

Hi girls

I just popped to say I'm pleased with my latest TNF.  I had flared to 79 after the second humira at Xmas and was gutted but after 2 x intralipids three weeks apart they are down again so I guess ILs work for me.
I'm due for a consultation with Dr G tomorrow - decided to go up there instead of phone - I reckon you get your money's worth face to face.  My LAD is still negative but my B cells have risen hugely which is encouraging.
At last things seem to be going in the right direction.

I am taking spatone liquid iron for my borderline anaemia too so hopefully that gets addressed.

So hopefully this is encouraging for others who have had a humira flare.

Good luck to those testing this week.

Betty xx

[agate]

Agate,

Well i have   been pondering all of this for many months  now   as we are going to   start in March, I have high uNK cells 8%  (Siobhan   quenby) and high NKa (31%) 25%dq alpha match 1.4 allel,  Negative LAD,   TNF alpha 28, Factor V Leiden hetro i am guessing i am  in the olympic   team!        I have seen Dr S who only tests and treats NKcells with 40mg  steroid & intralipids. But i was thinking that this may only  solve half of the problem? and i still have a high risk of MC  without the LIT or humira? However Dr  claims to have 85% success  rate?!

Me and my boyf have come to the conclusion that we are  going to try the full   works   in order to get the best chance but i  keep thinking what if it   works ie   option 3 it could save us  thousands! Do we really need the LIT   do we   really need Humira?! as  my TNF is below 30 and i wouldn't want 2   risk   anything 2 increase it  would i? (flare) My NKs reduced from 31% to 7% with Intralipids and  about 20% with IVIG so i know i defo dont   want   that!


We want to TTC naturally but only have 1 tube left Dr Gorgy mentioned scanning the ovaries to ensure i was ovulating on correct side then administering meds but its all about timing do you know how long Humira lasts in the body? I know LIT is 6-9 months which gives us a realistic window of opportunity to conceive.

very very confused                                                                               

To say a doc has a particular success rate is not necessarily helpful - as I tried to explain above, it seems v likely that steroids only would work for a lot of ladies, and intralipids for more, but there will be some ladies who it won't work for - so knowing a doc has an 85% success rate would be pretty depressing if you happened to be in his 15% failure group.

I wouldn't say that treating NKs with steroids & clex is 'only treating half the problem' - its more or less the same problem for all of us - too much NKa/TNFa activity and a tendency towards not enough free flowing blood (either due to clotting issues or due to the NKa/TNFa damage).   Steroids & clex might easily tackle your uNKs and clotting issues - but it might not.   So whether you decide to go down the humira route right from the start to aggressively suppress your immunes or whether you want to try just steroids first (or steroids and intralipids), its up to you - I don't think anyone could tell you for sure whether you will respond enough to steroids on their own or not - although my hunch is that you have an aggressive combination - the NKa/uNK/DQA match - which tends to suggest to me, you might have a higher chance of needing aggressive meds than someone who only had NKa/uNK without the DQa match.

Given your history of RPL - and negative LAD - I think you are probably one of the ladies who could benefit most from LIT.  The humira is another issue.     For LIT, it lasts for at least 6ish months for most ladies - but for a lot of ladies, it lasts indefinitely (but usually they are the ladies who didn't really need it in the first place - because if your LAD goes up and stays up easily, I THINK it would have done that anyway if you'd got and stayed pg) - for those of us who have a struggle to get LAD up, it sometimes does not last very well.

The effects of humira on uNKs haven't been properly studied to see how long they last - however, it only works through the mechanism of reducing TNFa - and the lasting effect on that varies a lot between individuals - its supposed to completely clear the body after about 5 months though.

I think if it was me - I'd go with steroids+clex+ILs - but probably have paternal LIT too - and maybe wait and see if that works before trying humira as well?    As to trying naturally - I guess if you haven't been pg since your ectopic you probably ought to do a monitored cycle - ovulation is a competitive process - every month, a whole batch of antral follicles on both ovaries compete to see which one can get big enough to swamp the others with hormones and get to be the one (or two, more rarely) that actually get to ovulate.  So its quite possible to have one ovary that has the 'winning' follicle most months.  If for example, you almost always ovulate on the side without the tube, that would reduce your chances for TTC naturally.   You are in a very good category for IVF though, so I wouldn't dismiss that option altogether - if you end up spending quite a lot each month to keep having ILs, clexane etc - it might be more cost effective to go for IVF - but there is no easy decision, as trying naturally might work (as might taking injectables to control ovulation with monitoring etc).  Its very hard to know what to do when you know you can get pg naturally to decide whether to do IVF or not.

[Bluebell14]

Hi Agate,

Thank u so much 4 yr reply i think u are right im decided on Intralipids, steroids, LIT, clexane etc and leave out the Humira. My last MC was conceived after just 2 months with the one tube but that was over a year ago now but we have been careful since whilst waiting test results etc. We have been accepted 4 IVF on NHS but i really dont want 2 go there if i dont need 2 what do you think about a stimulated cycle ie Clomid and scans 2 ensure ovulation from the correct side?

Thanks in advance

Zoe
x

[jo_11]

Zoe:  Wow, you've had a lot to think about and digest     If only we had a crystal ball, eh?  For what it's worth, I'd go with your decision too given that the humira can cause flare (which I know only too well!).  As for a natural cycle, if you're going to use meds, personally I'd avoid clomid and use low dose injectables... clomid has sooo many side effects potentially (I didn't get on well at all with this, although all ladies are different). 
 
Agate: Fabulous advice, as usual
 
Betty:  Thanks for your IL good news story; I'm hoping I'll be the same as you too!  A couple more weeks 'til I retest.
 
MissyMinx:  Sorry to hear of your eczema; are you sure it's a post-humira flare; did you get your TNF-a re-tested?  My understanding is that the effects of humira last c.5 months, but not sure if this applies to a flare.  On my third jab I came down with all sorts of things (mouth ulcers, verrucas, bit depressed - all a bit weird) but this all cleared itself up within a week... not sure if that meant my immunes have been fighting back or not. 
 
Sparklyone:  Didn't realise your TNF-a had gone down to 22!  Well done you!!  I look forward to seeing your progress on the ARGC thread.
 
Tama:  When are you re-testing?
 
Morrigan:  Good luck with your cycle; where are you at?
 
Hi to everyone else.

[Bluebell14]

Hi Jo,

Thanks 4 Yr advice can I ask what r the injectables? and what do they do? I am not very clued up on fertility treatments as getting preg has never been an issue  in the past.

Thank u again

Zoe
x

[jo_11]

Zoe: The injectables would be low dose FSH or FSH/LH combos, like Gonal-F or Menopur. They're the IVF drugs but would be in v low dose form for timed sex or IUI... Doing this you'd get a trigger shot so would know exactly when you ov.

[agate]

zoe:  i'd probably agree with jo about using injectables instead of clomid - it just means taking a lower dose of the stims drugs you probably used for IVF and then monitoring with scans and taking a trigger shot of hcg - then having sex or possibly doing IUI.

unfortunately, drugs affect both ovaries, so you can't force an ovulation to happen on the side that you want - but you would be able to see with scans which ovary appears to be the one that ovulates - it doesn't mean that it will always be that one, but it often is because one ovary is often dominant.  the ovaries are also pretty close together (more so than you'd think from 2d diagrams), so its not completely impossible for one ovary to ovulate but for the egg to be transmitted down the tube on the opposite side.  but it'd definitely be trying a medicated cycle at least once, I'd think.

[Bluebell14]

Thanks ladies 4 sharing yr thoughts with me i have been offered IVF on NHS but will they do all of this for me instead? Maybe as a 1st option? any ideas of cost if i was 2 pay private with Dr Gorgy? i have looked on his website it says monitored cycle £400 would this be it? any ideas how much these shots cost? sorry 4 all the questions but i have only been researching immunes and never even thought about fertility treatments as well I am going 2 go and see my GP in the morning and ask for a referrel to my local fertility clinic i am thinking if they can do this stuff 4 me i could see Dr Gorgy 4 LIT, Intralipids etc defo decided 2 leave out the Humira that is until Dr Gorgy trys to change my mind no doubt lol!!!

Zoe
xxx

[agate]

zoeella: I think if it was me, and I could have a whole IVF for free, I'd go for that - as its likely to have a higher success rate than trying naturally.   I think it would be monitored cycle costs (that's for the consults and the scans I guess) plus some drugs.   75 iu of stims is something like £15-20 - I GUESS it might be something like 7 days of that?  clomid would be cheaper, but less precise, or you could go completely natural - and just be monitored.  I don't know what your NHS fertility clinic would offer - but I guess you could ask - they might do a monitored clomid cycle maybe - but if they think you are already ovulating they might say there was no point in using drugs to make you ovulate - I would only take them up on anything though if it doesn't change your entitlement to IVF - a free IVF cycle is definitely worth having.