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Discussion Starter · #1 ·
Hi Everyone,

Has anybody had a consultation with the above at St Mary's Hospital in Paddington?  If so what did you think of them with regards to their approach to immunology??  The reason I ask is because my local EPU have said they would refer me there because of  my second miscarriage, and I've not seen anybody on this website talk about this consultant with regards to immunology, and although I appreciate the help from my local EPU, they seem very behind the times when it comes to knowledge of NK cells and the whole immunology treatment. 

I would really like to get a second opinion apart from the ARGC's approach, on why a second miscarriage occured with immunology treatement, so any advice would be really helpful.

Thanks,

Hazel
xxx
 

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Hi Hazel

I believe that Prof Reagan is very much against immunology treatment.  Certainly everything I've read about her tends to indicate this.

Having said that, I have heard that she is very good & worth seeing, particularly if you can see her on the NHS.

Best of luck

Susie
 

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Hi Hazel,

I attend her Clinic - have done since Mar '02.
St Mary's, as Susie says aren't overly keen on the whole NK Cells testing, but will do it if pushed.
I'd recommend getting on the NK Cells trial with Siobhan Quenby at Liverpool Women's Hosp - I went on it last March, but my levels were deemed normal.
Other thing to remember is that no treatment is guarenteed to work 1st time, everytime and sometimes takes 2-3 go's to succeed - same as with treatment for blood clotting.

HTH

Tamsin
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Hi Hazel,
i was under the care of said Professor for two years after my third miscarriage.
I am so sorry to write this but i have not got a good thing to say about her or her treatment.
Under her care i had another 2 miscarriages and still her best advice was sorry bad luck try again.
When we mentioned NK Cells to her she went mad saying basically it was a waste of time.
We had enough of her and decided to go to ARGC.
with immune treatment and my 1st ivf there i am now 28w+ pregnant, that sure does not seem like a waste of time to me.
Maybe we were just unlucky with her but thought you should know my experience.
Best of luck whatever you decide to do

Carmela X
 

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Hi Hazel,

When I saw Prof. Regan she was totally against the idea of immune testing. She said that she would like to do some clinical trials but it will take years.

One of her colleagues told me that they were waiting for babies to be born with birth defects through the immune meds. He just about rubbed his hands with glee at the thought. The implication was that they would close those doctors down.

I believe that Dr Beer has met with her team and that they were a little more open to the concepts but I'm not holding my breath.

Prof. Regan has done some great work for women with miscarriages and esp. the clotting disorders in the past but she is out of her depths with the new cutting edge stuff (IMHO).

My personal opinion was that she was not up to date with research and very narrow-minded. I asked her to provide references for one particular claim she made and she was unable to.

Hazel - I don't know the complete battery of tests that she runs and she just be able to find why these tragic miscarriages occur for you. However, do not expect her to provide answers on the immune stuff as she is not up to speed.

Have you considered Dr ******* for a second opinion or a telephone conference with Dr Beer?

http://www.miscarriageclinic.co.uk/

Hope that this helps.

With love from,
 

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Hi
will add my tuppence worth too
I have also been under her at The Recurrent Miscarriage Clinic at St Marys. They diagnosed antiphopholipid Antibodies as being the cause of my 3 miscarriages. They did many blood tests and came up with an answer very efficently.
I was impressed, though suddenly was unable to get pregnant. So refered to ARGC for IVF.
ARGC diagnoseed Natural Killer Cells and though had IVF with treatment it still failed.
I have had more tests done under Dr Beer and he has prescribed even more immune treatment.
I went back to St Marys with his advice and they disagreed with this diagnosis
saying I just needed IVF and no immune treatment.
I have decided to give all the immune stuff a go, against there advice, so only time will tell for me. (God knows what Ill tell them if it works!)
I would reccomend you go and see what they have to say, you can always then go elsewhere for immune stuff if you stll need to
Best of luck
kt
 

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Discussion Starter · #7 ·
Dear All,

Thank you so much for all your responses.  I had a feeling that she didn't look at immunology as I'd never heard her name mentioned before on the immunology thread.  I know my problem is with immunology so I think I would be wise to stick with consultants that do believe in it.  I've booked an appointment with Dr ******* for 3rd September to get a second opinion from him.  Luckily my private healthcare will pay for the consultation as I'm now officially classed as 'recurrent miscarriage'.

Wishing you all lots of luck to achieve our so wanted dreams  ^reiki^ ^reiki^

Carmela - your long awaited pregnancy gives me hope that one day I might get there, I just need to be positive and patient - something I'm not good at!.  Wishing you lots of luck to the end  ^reiki^ ^reiki^

Love Hazel
x
 

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Hi
IProf Regan and her team were against NKcell testing but I believe they are doing more reaearch on the effect of these testing in the near future. I worked in the Recurrent M/c clinic a couple of years ago as a nurse and I have only good things to say about them BUT they are very conservative in their approach and did not entirely believe in treating miscarriages with anything else than clexane and aspirin. I had several chemicals and 1 m/c and even though I used to work in the department I opted to go to the ARGC for the full-blown testing including the nkcell testing. I had already done the tests ~Prof Reagan recommended and they all came back negative.
Neverthelesss I used aspirin and clexane in a subsequent ivf cycle twice and stillm/c, they siad "bad luck" there is something wrong with your uterus. I had a hysteroscopy which showed no uteine problems. In the end I went to the ARGC and with teir approach tested + for NKcells which St. Marys never tested me for.
I had 2 loads of ivig with clexane and aspirin throughout my cycle and pregnancy and Im happy to announce that my dd is 7months. I dont think I would have had a baby with a conservative approach. I dont hold it against them I just feel they should get "real" and realise that not everyone is APA+ /sticky blood syndrome with miscarriages, there is a wider picture sometimes.
sorry to ramble on but I worked there until 2001 and just feel that they have helped many women but they are not the best place to go to if you need that "little bit more"
Danni
 

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Very interesting reading all your replies!!

I think if i was still unsure about the NK Cells thing, i may be thinking of going else where too!!  However, I took the step, as i mentioned of going on the NK Cells trial that Dr Siobhan Quenby was runnng - and is now runninng agan - and feel confident now that NK Cells isn't my prob - my result came back as only 1.9%, which was normal - they were looking for levels of 5% +.

However I am beginning to appreciate what you said Danni that St M's are "very conservative in their approach"....another example is with regard to the Asp/Hep combo, they still only recommend 20mg Clexane, where as places like St Thomas's offer 40mg as standard!

I fully intend to ask Raj, who i see at St M's, what real harm can come from adding another 20mg Clexane!
Sorry I appreciate this thread is about immuniology, so i won't go on about APS LOL.  I wish you ladies all the very best in getting some answers...........

Hazel - I was intrigued to hear that your private healthcare will pay for the Consultation with Dr *******!  My Insurance covers miscarriage, but not investigations into Infertility - which this is, isn't it or have you managed to re-word it?!!?  ;)  I'm with AXA PPP on a medical history disregarded policy.  Maybe I ought to give them a ring and see if Recurrent Miscarriage is covered!?

Tamsin
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Hi Tamsin

I saw Mr ******* last year & everything was covered for me by PPP - under "recurrent miscarriage", so it's worth checking with them.  I have also seen several people & had a hysteroscopy covered by PPP under "investigations into infertility".  Maybe your policy is different, but it saved us loads of £££.

Best of luck

Susie
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Discussion Starter · #11 ·
Hi Tamsin,

My private healthcare is also with AXA PPP and after my first miscarriage, and because of my high NK cells I was told I was high risk of a miscarriage happening again. Armed with this information  I managed to have a hystereoscopy done under AXA PPP, and now I have miscarried twice, they will investigate anything into recurrent miscarriage, including getting a second opinion (although they want the referral to come from your doctor), and also any further blood tests will be carried out under recurrent miscarriage.  The fact that you have had 4 miscarriages you should focus your conversation on that, and don't mention infertility, because as soon as you mention that word they'll pull the plug on helping you.  So far it's saved me ££££ by getting AXA PPP to pay for investigations.

Good luck!

Hazel
xxx


 

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Hi Hazel,

Thanks for that!
Once I'm fully recovered from my Op, I'll definitly think about maybe getting a 2nd opinion elsewhere, privately - probably at St Thomas's with Dr Khamasta.  I've been with St Mary's Recurrent Miscarriage Clinic for over 3 years now (on NHS) and whilst I think we may have found a cause for my m/c's, i.e. "sticky blood", I don't think it'd harm getting, as I say, a 2nd opinion!
I shall bear in mind what you say though, and only quote Recurrent Miscarriage Investigations and not Infertility!!!  Will let you know how I get on!

Thanks again,

Tamsin
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Hi Hazel and everyone else.  I'm somewhat new to this board.  I've responded to a similar post to Hazel on the Care board but thought I'd share my own experience with the rest of you.  Obviously, we're all influenced by our personal experiences and, I think, need to be a bit careful in making recommendations as what works for one doesn't necessarily work for others.  There is so much mystery in fertility.  I'm convinced no one clinic has "the answer" because a single answer doesn't work in this very complex field.
In contrast to some of you who had "ARGC miracles", my experience was the opposite.  I was told be Dr Beer I "would never conceive or sustain a pregnancy unless I followed his recommendations".  I can't remember all my "levels" on his tests but I was clearly within the ranges that required ivig, etc.  I was unconvinced by him and also by the ARGC team who told me month after month that my hormone levels weren't good and I should wait "another month" for treatment.  At the age of 40, with two prior failed cycles, I didn't want to keep waiting.  I went to the Lister and was told I could begin a cycle the next day.  We had poor response (only 2 eggs and extremely poor sperm quality), had ICSI and had the two resulting embryos replaced. 

I followed *******'s regime of dexamethasone + clexane during the IVF cycle, but went to St Mary's for ante-natal care.  I was put in the recurrent miscarriage group, even though I had not had a m/c, because they considered me "high risk" (due to age, APA, hypothyroidism and immune problems).  They monitored me every two weeks during my pregnancy and stressed that they were always available and I should call with any questions, doubts, problems, etc.  In contrast to what someone else posted above, they kept me on 40mg of clexane throughout the pregnancy -- til week 37.  In contrast to *******'s approach, they weaned me off steroids from 10 weeks (rather than *******'s 12). 

Bottom line:  my son is now 15 months old, healthy and active.

Who knows what would have happened if I had followed the ARGC/Beer approach?  Perhaps I eventually would have achieved and sustained a pregnancy there, too (if ARGC had ever let me go ahead with a cycle).  Obviously, there approach works with many people and I don't hesitate to recommend them (ARGC that is, not Beer of whom I still remain unconvinced), but with the caveat that I wouldn't allow them to push me off from month to month for as long as I did. 

I can't compare St Mary's antenatal care with any other hospitals as I've only been pregnant once.  Based on this experience, though, I can say I was very, very positively impressed, particularly by the RCM team. The very close monitoring I received throughout my pregnancy gave me great confidence, and the fact I was in the RCM group meant I received particularly good attention when it came time to deliver.

Best wishes to you, Hazel -- and to everyone else!
 

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hi
Its good to hear different opinions. I gave birth at St.Marys and they were fantastic, not because they knew me but the care is generally good. the building is old but they were good-I gave birth prematurely and my dd had fantastic care.
However I, on the other hand, dont feel I would have had a baby with the clexane, aspirin they recommended. I miscarried twice on those, the second time had steroids but still m/c. The ARGC had a more aggressive approach to my high NKcell levels which were my problem not the "sticky blood syndrome",so in that respect Im glad I went to the ARGC
Danni
 

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All

I have been to see Mr Rai privately at St Marys Lindo Wing - I have Factor V Leiden and I have been advised to use 40mg clexane from start of egg collection throughout pregnancy and 6 weeks after... and if I get a bfp to start baby asprin too.
I dont have 'sticky blood - APA's or Lupus) but I do have Factor V Ledien and MTHFR.
I felt very supported by Mr Rai - to come to terms with our miscarriage and the hope to move foward. I had lots and lots of tests done and our tissues were sent for cytogenetic results. I went to him with a lot of questions too which he answered in a frank and honest manner.

I think its good to get two perspectives - and to be tested  first on the known causes of miscarriages and then if you feel that is not enough look into the immune side of things and make your decision.

I agree with LVD there is so much mystery still in the fertility field and its seems like immonology research is new - I hope with time we will all get answers to our questions and have treatments available to allow us to fulfill our dreams of having children.

Best of luck to all of you Debs x
 

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Discussion Starter · #16 ·
Hi LVD,

I think you are right in saying that what works for one person, necessarily won't work for another as we all have individual contributing problems with our  ongoing infertility and therefore are individual cases.  Sometimes I feel so overwhelmed with information coming from all directions in the form of consultants and websites, that sometimes I don't know which way to turn and what decision to make for the best.  After 2 miscarriages, both with immunology treatment, sometimes it does leave me wondering whether the next time (hopefully) that if I conceive naturally, I should leave well alone the immunology drugs and let nature take it's course.  After all, 'immunology' investigations are very new to the infertility world and I feel we really are guinea pigs at the moment who are part of the 'trial & error' phase.

Hazel
xxx
 
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