Humira Thread Part 6
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Audrey
Just read your post.
I have DQ alpha incompatibility (amongst other things) and had Lymphocyte Immune therapy (LIT) in July. I apparently have the same DQ alpha numbers from both parents-making my immune system very good, and though my partner has got different numbers he got the same two from both his Parents. The two he got are the two that women are most likely to cause a problem for the woman. This was what Dr Beer told me anyway.
The LIT was a doddle. Prior to it needed a few blood tests and then Partner had to give his blood in the morning and I went in later to the hospital and they injected his white blood cells first into a vein (no problem) and then just under the skin about 5 times in my arm just above my wrist (quite painful). I then had to have anti D. All in all cost about £1000. There is quite a bit of research done on it, some positive, some negative. Time will tell for me
Kate Thanks for the advice - will get tested on Monday. Do you know how quickly I get the results as may be fertile the following weekend
kt
Just read your post.
I have DQ alpha incompatibility (amongst other things) and had Lymphocyte Immune therapy (LIT) in July. I apparently have the same DQ alpha numbers from both parents-making my immune system very good, and though my partner has got different numbers he got the same two from both his Parents. The two he got are the two that women are most likely to cause a problem for the woman. This was what Dr Beer told me anyway.
The LIT was a doddle. Prior to it needed a few blood tests and then Partner had to give his blood in the morning and I went in later to the hospital and they injected his white blood cells first into a vein (no problem) and then just under the skin about 5 times in my arm just above my wrist (quite painful). I then had to have anti D. All in all cost about £1000. There is quite a bit of research done on it, some positive, some negative. Time will tell for me
Kate Thanks for the advice - will get tested on Monday. Do you know how quickly I get the results as may be fertile the following weekend
kt
kt
it normally takes until Friday for me to get my results emailed back to me by DB's office if I send them by Fedex on Monday morning. I email Dr Beer's team to say that I have sent them and ask them ''to email me the results and any comments from Dr Beer as soon as they come in''. Which usually works fine.
Good luck!
Susie- I did have a donor cycle fail (Angie has the memory of an elephant, eh!!!) back in 2000- after which I 'gave up' fertility treatment.....changed my mind after 3.5 years and 18 months later, here we are! ho hum
Good luck everyone. I had swollen ankles at the end of work yesterday...I am only 16 weeks - surely this can't be the beginning of old-lady-legs already!!! I will let you know when the swelling is so bad that I need to wear slippers to work! Ha ha.
Love
Kate
it normally takes until Friday for me to get my results emailed back to me by DB's office if I send them by Fedex on Monday morning. I email Dr Beer's team to say that I have sent them and ask them ''to email me the results and any comments from Dr Beer as soon as they come in''. Which usually works fine.
Good luck!
Susie- I did have a donor cycle fail (Angie has the memory of an elephant, eh!!!) back in 2000- after which I 'gave up' fertility treatment.....changed my mind after 3.5 years and 18 months later, here we are! ho hum
Good luck everyone. I had swollen ankles at the end of work yesterday...I am only 16 weeks - surely this can't be the beginning of old-lady-legs already!!! I will let you know when the swelling is so bad that I need to wear slippers to work! Ha ha.
Love
Kate
Audrey
Did you get your DQ ALpha testing done here or in the US - we haven't had this and no one has suggested we get it done - I assume you don't need it if using donor eggs - I expect that is rather a stupid question.
Hope you are ok Soozzze.
Kate glad things are ok.
Angie
xx
Did you get your DQ ALpha testing done here or in the US - we haven't had this and no one has suggested we get it done - I assume you don't need it if using donor eggs - I expect that is rather a stupid question.
Hope you are ok Soozzze.
Kate glad things are ok.
Angie
xx
Hi Angie,
We haven't had the DQ Alpha testing yet but I now know of two people who have had the testing done through ARGC. We have an appointment this afternoon with Mr T so we should find out more them. I think the criteria for getting the test is recurrent miscarriages but thats about as much as I know. I found this website which describes the testing a bit here ( the 3rd paragraph ) http://www.asklenore.info/miscarriage/immune_testing.html
If I find out anymore this afternoon I will let you know
Audrey
We haven't had the DQ Alpha testing yet but I now know of two people who have had the testing done through ARGC. We have an appointment this afternoon with Mr T so we should find out more them. I think the criteria for getting the test is recurrent miscarriages but thats about as much as I know. I found this website which describes the testing a bit here ( the 3rd paragraph ) http://www.asklenore.info/miscarriage/immune_testing.html
If I find out anymore this afternoon I will let you know
Audrey
Ahh that explains it we don't have miscarriages just no implantation so that's why no one has suggested it - well I am on day 30 of my cycle and no AF - no pregnancy checked twice so either cycle messed up by last IVF or heading towards menopasue - cos of operation on ovaries - my cycles are generally really short 25/26 days.
Very weird - maybe its just hormones left over from IVF making me late. Anyone had the same?
Angie
Very weird - maybe its just hormones left over from IVF making me late. Anyone had the same?
Angie
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359 Posts
Hi Ladies,
Hope you don't mind me posting on here?!
I am having treatment at the ARGC and found out a few weeks ago I have high TNFa levels (46) and boarderline NK cells. I took my first Humira jab 2 weeks ago and due to take the second on sunday. Would just like a little fed back on how all this immune/humira stuff works. Are my levels at 46 extremely high? Has there been a lot of positive feedback after taking the Humira? Any info would be greatly received.
Thanks girls, goodluck to each and every one of you.
Hope you don't mind me posting on here?!
I am having treatment at the ARGC and found out a few weeks ago I have high TNFa levels (46) and boarderline NK cells. I took my first Humira jab 2 weeks ago and due to take the second on sunday. Would just like a little fed back on how all this immune/humira stuff works. Are my levels at 46 extremely high? Has there been a lot of positive feedback after taking the Humira? Any info would be greatly received.
Thanks girls, goodluck to each and every one of you.
Joined
·
712 Posts
Hello girls, I know that Victoria (London Girl) posts on here - I wanted to give you the wonderful news that she gave birth to Zaria Grace by C section yesterday (4 August) at 13.15.
She weighed 8lb 5 and both Mummy and baby doing really well. I am a very proud godmother!!! I am seeing them today, so I will send your love to her. 
Well done Victoria- so pleased for you!!!
Hi guys,
well yet again the hand of fate and general crappiness has stepped in to blight my pregnancy. I have been listening to check for the baby's heartbeat about twice a week (as it's too soon for me to feel it move yet). Anyway, last checked on Tuesday last week- no probs. Checked on Friday and found that the rhythm was all over the place- irregular and not at all normal. Have worked as a paediatrician with 4 years as a neonatal intensive care registrar so can spot a nasty arrhythmia from 100 yards.
So there I am, in tears in the bathroom.Not knowing what to do and praying that I am mistaken. ha ha ha. No bloody luck. Anyway, managed to get a scan booked at MUMs on saturday am at 0830 which confirmed that I was right and that the fetal heart is not doing what it's meant to do at all. On the plus side the heart looks structurallynormal, and the baby (very clearly a boy - legs in the air, tackle dangling.....) was completely normal otherwise. Just seems that the conduction pathways in the heart haven't formed normally - perhaps....or could it be an immune problem.
Rushed home - emailed Alan beer for advice. This was at 11 am UK time. Sent DH striaght off to Nottingham to get some IVIG - ''if it's immune, this is all we can do to help'' being our thought process at that point. Off he goes - on the 5 hour round trip....whilst being devastated and feeling deperate.
By 12.45 DB had replied- that was at 5.21 am according to the time on the email. God bless people who don't need any sleep! He confirmed it 'could' be immune and said 'get some IVIG on board'. Nothing else to add though, except a list of extra tests to get done.
Managed to get the obstetric registrar at Gloucester to put a cannula in for me and to take the blood tests.....thank God for being a local Dr and being able to ask a special favour.
Then spent 6 hours having ivig on saturday night. I reacted badly to it this time - I guess because I am no longer on steroids. It was grim. But hey ho. Anyway we hoped for a miraculous cure and a normal heart beat when we checked yesterday. No, worse than before. Now we are really terrified.
I have tried to work out what the cause can be (medically) so I can understand what it means for the baby - will he die suddenly and without warning? Possibly. Will he be fine - unlikely but possible. Will he go into heart failure and be a sick fetus....probably. Then he might die as a result of that.
It has been a desperate weeked and we have cried ourselves to death. We feel like we've been mugged in an alley - we weren't expecting anything like this. Does anyone ever? No. But we had been primed to worry about so much other stuff, but not heart problems. And certainly not heart problems that can't be diagnosed and that almost certainly can't be treated at this stage.
It feels to us like we are so much further along than 17 weeks - but to normal doctors etc it's just too soon to be able to do anything in terms of treatment/ diagnosis. Poor little boy is totally helpless and so are we.
Anyway- a cheery start for Monday morning. Sorry but needed to get it off my chest a bit. We are waiting to hear whether we can get an appointment with a paediatric cardiologist to find out more. I'll keep you posted.
Sorry for gloom-fest. It has been the worst weekend of our lives. So utterly helpless to save his little life.
Love
Kate
Hi guys,
well yet again the hand of fate and general crappiness has stepped in to blight my pregnancy. I have been listening to check for the baby's heartbeat about twice a week (as it's too soon for me to feel it move yet). Anyway, last checked on Tuesday last week- no probs. Checked on Friday and found that the rhythm was all over the place- irregular and not at all normal. Have worked as a paediatrician with 4 years as a neonatal intensive care registrar so can spot a nasty arrhythmia from 100 yards.
So there I am, in tears in the bathroom.Not knowing what to do and praying that I am mistaken. ha ha ha. No bloody luck. Anyway, managed to get a scan booked at MUMs on saturday am at 0830 which confirmed that I was right and that the fetal heart is not doing what it's meant to do at all. On the plus side the heart looks structurallynormal, and the baby (very clearly a boy - legs in the air, tackle dangling.....) was completely normal otherwise. Just seems that the conduction pathways in the heart haven't formed normally - perhaps....or could it be an immune problem.
Rushed home - emailed Alan beer for advice. This was at 11 am UK time. Sent DH striaght off to Nottingham to get some IVIG - ''if it's immune, this is all we can do to help'' being our thought process at that point. Off he goes - on the 5 hour round trip....whilst being devastated and feeling deperate.
By 12.45 DB had replied- that was at 5.21 am according to the time on the email. God bless people who don't need any sleep! He confirmed it 'could' be immune and said 'get some IVIG on board'. Nothing else to add though, except a list of extra tests to get done.
Managed to get the obstetric registrar at Gloucester to put a cannula in for me and to take the blood tests.....thank God for being a local Dr and being able to ask a special favour.
Then spent 6 hours having ivig on saturday night. I reacted badly to it this time - I guess because I am no longer on steroids. It was grim. But hey ho. Anyway we hoped for a miraculous cure and a normal heart beat when we checked yesterday. No, worse than before. Now we are really terrified.
I have tried to work out what the cause can be (medically) so I can understand what it means for the baby - will he die suddenly and without warning? Possibly. Will he be fine - unlikely but possible. Will he go into heart failure and be a sick fetus....probably. Then he might die as a result of that.
It has been a desperate weeked and we have cried ourselves to death. We feel like we've been mugged in an alley - we weren't expecting anything like this. Does anyone ever? No. But we had been primed to worry about so much other stuff, but not heart problems. And certainly not heart problems that can't be diagnosed and that almost certainly can't be treated at this stage.
It feels to us like we are so much further along than 17 weeks - but to normal doctors etc it's just too soon to be able to do anything in terms of treatment/ diagnosis. Poor little boy is totally helpless and so are we.
Anyway- a cheery start for Monday morning. Sorry but needed to get it off my chest a bit. We are waiting to hear whether we can get an appointment with a paediatric cardiologist to find out more. I'll keep you posted.
Sorry for gloom-fest. It has been the worst weekend of our lives. So utterly helpless to save his little life.
Love
Kate
OMG Kate, I am so sorry to hear what you have been going through. Nothing I can say at all that will help, but I am thinking of you, and hoping like mad things will improve... Sometimes it is a complete sh1t knowing so much eh.
Love to you, DH and your little boy
Jo xxx
Love to you, DH and your little boy
Jo xxx
Thanks Jo. God it's awful- am a wreck.
Anyway, my practice have been great and have cancelled my afternoon surgery so I can try to get something organised. Haven't heard back from the B'ham cardiologist that MUMs were going to tee up for me.....sick with worry. So I have called the team at Bristol where I used to work and am now waiting to hear whether they can scan me and give an opinion.
Yuck. So so worried. Please let someone take it seriously - I know there's nothing that can be done really, but I want to know as much as possible about what it is. Just in case he dies and we always wonder forever what the diagnosis was. Depressing, but that may be the only thing we get out of seeing someone. It's not the kind of thing you could diagnose on a post mortem.
God, how awful to even be thinking this way after all.
Just been phoned to say they can see me in Bristol in an hour - oh my God, stop the clock. I need a bloody time machine to do that, but here goes. More soon
Love
Kate
Anyway, my practice have been great and have cancelled my afternoon surgery so I can try to get something organised. Haven't heard back from the B'ham cardiologist that MUMs were going to tee up for me.....sick with worry. So I have called the team at Bristol where I used to work and am now waiting to hear whether they can scan me and give an opinion.
Yuck. So so worried. Please let someone take it seriously - I know there's nothing that can be done really, but I want to know as much as possible about what it is. Just in case he dies and we always wonder forever what the diagnosis was. Depressing, but that may be the only thing we get out of seeing someone. It's not the kind of thing you could diagnose on a post mortem.
God, how awful to even be thinking this way after all.
Just been phoned to say they can see me in Bristol in an hour - oh my God, stop the clock. I need a bloody time machine to do that, but here goes. More soon
Love
Kate
Thanks everyone - it means more than you can know to have you all out there praying for us.
We are no further forward with a diagnosis but have had IVIG and have had confirmed that my NKs and cytokines are through the roof (tests done last tuesday, before all this kicked off) - maybe it's the cause,we just don't know yet.
Had a scan at Bristol yesterday - but the consultant said she didn't know what it was but didn't look good. We are going back there in a week to see what';s happened and are dopplering daily to see if anything changes on a day-to-day basis too.
Today I pulled rank, played my 'doctor' card and especially my 'used to be a paediatrician' card and got seen by the top man at Great Ormond Street. Who was lovely and kind and made us feel better. he doesn't know what it is definitely either but came up wth a couple of alternative scenarios that could epxlain the findings which might not seem so bad.
But advice still is to keepmonitoring and see what happens. It is so so scary.
If only I could feel him moving then I wouldn't be constantly living in fear that he has died between each time I listen for the heart beat. It's awful.
Anyway that's all for now. I will keep you updated as and when I know anything useful. Sorry if I am incoherent and babbling but have cried for the last 5 days all the time and am on my knees with exhaustion and stress. You can imagine.....
Thanks again for being there. I am sure it helps.
Love
KAte
We are no further forward with a diagnosis but have had IVIG and have had confirmed that my NKs and cytokines are through the roof (tests done last tuesday, before all this kicked off) - maybe it's the cause,we just don't know yet.
Had a scan at Bristol yesterday - but the consultant said she didn't know what it was but didn't look good. We are going back there in a week to see what';s happened and are dopplering daily to see if anything changes on a day-to-day basis too.
Today I pulled rank, played my 'doctor' card and especially my 'used to be a paediatrician' card and got seen by the top man at Great Ormond Street. Who was lovely and kind and made us feel better. he doesn't know what it is definitely either but came up wth a couple of alternative scenarios that could epxlain the findings which might not seem so bad.
But advice still is to keepmonitoring and see what happens. It is so so scary.
If only I could feel him moving then I wouldn't be constantly living in fear that he has died between each time I listen for the heart beat. It's awful.
Anyway that's all for now. I will keep you updated as and when I know anything useful. Sorry if I am incoherent and babbling but have cried for the last 5 days all the time and am on my knees with exhaustion and stress. You can imagine.....
Thanks again for being there. I am sure it helps.
Love
KAte
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