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IMMUNE THERAPY - ANY VIEWS

(11 Posts)
RUBYAPPLE Sat 14-May-11 19:23:36

Hi Everyone

I hope you can help me.

Basically I have had 5 cycles of IVF (4 cycles ending with miscarriage at 5 weeks) and recently I suffered another miscarriage on my 5th attempt at 13 weeks. We went for our first antenatal appointment and no pregnancy sac was on the screen.....we were both devastated; we were so hopeful this time!

Doctors are still investigating as to why this happened - it may have been an early miscarriage/chemical pregnancy.....though I had no cramping/bleeding throughout so I don't understand why this happened......

I have had every test/operation under the sun - last year I was thoroughly investigated and all tests appeared normal. Doctors just advise that "I try again" ...... easier said than done - its not costing them anything (we've already spent £35K on IVF)!!

I just don't know what to do next though we have both decided to try one more time before going down the adoption/surrogacy route. Something is definitely wrong.

I have come across 3 miscarriage specialists (Dr Gorgy, Dr Rai and Dr Shehata) - can anyone recommend which is best?

I have also been reading about immune therapy - is this really the answer to a successful pregnancy? However, I have also read that many medics are against it; even my own IVF Doctor is very skeptical about it.

I am willing to try anything possible before I give up my hope of becoming pregnant (as I'm sure many of you can relate to this) but I just want to be completely sure that I'm seeing the best Doctor who will test me for everything and if immune therapy is the answer, then I'll even do that.

So if anyone out there has has this treatment and can vouch for its effectiveness, I would really appreciate any help and advice you could offer me (and perhaps other ladies thinking the same).

Many thanks
Ruby Apple x

milkyway07 Sat 14-May-11 23:19:38

Hi Rubyapple. I'm sorry for what you are going through. I can't help you as such, but there are some women in the "recurrent miscarriages Part 5 thread" within this topic who are being treated by Dr Shehata. Maybe they could be of more help and give you some advice.

Hope you find the information you are looking for.

RUBYAPPLE Sun 15-May-11 16:47:39

Thanks Milkyway. I'm new to this forum - where exactly is "r/m Part 5 thread"?

RUBYAPPLE Sun 15-May-11 16:52:02

Sorry Milkyway - I hadn't searched properly - just found it.

sotough Sun 15-May-11 22:22:18

hi ruby, so sorry to hear about your MC - what a huge shock that must have been, to find out at 13 weeks. I am surprised/shocked that as you were having IVF treatment, your scan was not carried out much earlier? What on earth was your clinic doing, leaving you until 13 weeks to scan, particularly when you have such a history of recurrent miscarriage at five weeks?? I would have expected scans at seven, eight and ten weeks or at least at one of those stages, if not all three?
i could do with a bit more information to be able to help you. how old you are? (hugely significant) Also which part of the UK are you in?
I have had immune treatment and i did have a successful pregnancy with it! However, I also had some other treatment at the same time, so i have never been sure whether it was the immune treatment that made the difference. However, it is not expensive (once you've had the tests, which are pricey) or particularly unpleasant, so my view (i'm not a doctor) would be that it would definitely be worth a try. If we try for another baby, then I will def take the treatment again, as it may have made all the difference. LIke you we were at the point of thinking of surrogacy, if my last pregnancy hadn't worked out...
One other thing that could be of interest if you are over 35 is a new and very specialised treatment at Nottingham Care in which they can test the quality of your eggs. They can test for a huge range of problems with the eggs. I'm not an expert on this but a friend had it and it worked. she'd had multiple miscarriages and spent an absolute fortune. only when she went to CARE did she discover that 95pc of her eggs were flawed. They were able to select the good eggs and she is now in her third trimester. feel free to private mail me if you want any more info, though i don't have much more info about the CARE treatment as i didn't have it myself.

RUBYAPPLE Tue 17-May-11 21:16:50

Hi sotough

I am new to this forum. Can you tell me how to mail you privately please?

Thanks
Rubyapple

Havingkittens Wed 25-May-11 09:47:16

Hi Ruby, sorry to hear of your losses and frustrations with testing. I do really recommend you come and join the Recurrent Buns pt.5 thread. We are in constant discussion about testing, results, treatment etc. and have all learned a great deal from one another. The subject of immune therapy is very much a hot topic on there these days with a lot of us being treated or waiting for tests for that in recent months.

Sotough was very kind and gave me some great insights to this treatment when I was going through my 6th pregnancy loss at Christmas. There was a very limited amount of information available on the forums about it at that time but now that quite a few of us are looking at this treatment is becoming much more widely discussed.

As you have been having IVF I would recommend you have a look at the forums on www.fertilityfriends.co.uk - there is an area there for immune testing and there are aspects more relevant to IVF that are discussed on there which haven't been addressed on the Recurrent Buns thread, such as Intralipid Infusions - which is a treatment that was recently featured in a Daily Mail article.

If you want to send a Private Message to Sotough, or any other MN member, just click on the "Message Poster" bit on the tab above their post where their name is.

I wish you the best of luck.

sotough Wed 25-May-11 20:48:40

hi there ruby, i'm still around so do private message me and hope i can help in some small way.

RUBYAPPLE Sat 28-May-11 11:38:21

Hi Havingkittens

Thank you for your message - I appreciated your advice and will read this thread for info. Here I am moaning about my 5th miscarriage and you have suffered a 6th - I was sorry to read that. Can I ask what investigations are you trying?

As I live outside London (as most of the specialists are based here) at the moment I am searching for other consultants locally. Immune Therapy may not be for me but I have read so much information that it works. I know its going to cost a bomb but I just want to cover everything before trying alternatives.

My Dr is hopeless - he hasn't even given me a reason for my loss (I don't think he personally knows) and just put it down to an early/biochemical pregnancy and still advised I just "try again" but when do you stop? We even consulted a fortune teller (thats how desperate I've got) and she said that this year was going to be lucky for us and just with that bit of hope we tried again........I don't know, sometimes I think Drs don't tell patients everything when I know something is defo wrong with me as it always happens at the same time (5 weeks).

I will look at this thread now and see if I can find anything. I may PM you sometime too.

Take care
Ruby x

Havingkittens Mon 30-May-11 22:30:35

Hi RUBYAPPLE, you have every right to moan about 5! Don't feel bad. We are all going through the same heartache and if we can give each other any support, empathy or any pointers in the right direction then that is something at least.

I have had the standard tests offered by the NHS Recurrent Miscarriage Clinic at UCH, which are the blood clotting related problems, genetic tests for myself and partner, hormone levels, thyroid function, and uterus scan. All these came back clear, apart from the fact that my ovarian reserve isn't what is was due to my age, so the quality of my eggs could be compromised. I was advised to try 75mg asprin and 25 microgrammes Vit D3 in my next pregnancy as well as early and regular scanning. Unfortunately that didn't work for me. My GP is very helpful and so I went to see him and asked if he would refer me to Dr Shehata on the NHS, which he did. I got an appointment within 3 months and then the results 3 weeks later by telephone. My NK Cell levels came up as 1.45 which is about double what they should be so I am now on his treatment plan of taking 25mg Pregnisolone from Ovulation until 12 weeks if I am pregnant (to be weaned off over the following 2 weeks), or, if my period comes, to stop taking them again until I next Ovulate. He also recommended the same dose of asprin and Vit D3 as well as Pregnacare with additional Omega 3 supplements for 6 weeks prior to conception and then ongoing. I will also be taking progesterone pessaries once I become pregnant. I have just done 2 cycles of the steroids but unfortunately my period showed up yesterday. I'm hoping it doesn't take too long to fall pregnant as I will have to take a break from trying with the steroids if I don't fall pregnant within 6 months.

Have you looked into the Care Clinic in Nottingham? They seem to have a Reproductive Immunology Programme for IVF patients with Immune issues. They do treatment on the NHS from what I can see. Maybe you can ask your GP to refer you there? There is a forum on their website so maybe you can get a bit more info talking to the ladies on there? Good luck. x

RUBYAPPLE Tue 31-May-11 20:41:44

Hi Havingkittens

Thanks for your message. I actually haven't been told I need 'immune therapy' ..... its just because it pops up everywhere when I'm doing searches for RPL, I thought I would do my homework IF consultants say I do need it.
Also I live outside London so travelling will be quite a trek (plus getting the time off work etc...) so my GP has made a NHS referral to another hospital nearby......I'm going to see what tests they offer and who knows, I may very well end up coming to London.

I enquired with Care Notts but they said patients had had to be on their waiting lists for at least a couple of months before being treated and as I have to rely on IVF to become pregnant, our funds are limited this time so really it has to be at the best consultant who covers every test in one place!

Sorry to hear your period started; what a disappointment. I'm disappointed with my GP as to this day they still haven't told me the cause of my RPL (I don't think they know themselves) but throughout those 13 weeks not once did I have any cramping/bleeding - I can't understand it myself?? I do think however could it have been due to my urine (thrush) infection (as I had to take a course of antibiotics twice) and then they said I had Group B Strep but insisted that this needn't be treated as it could create more thrush so I never took anything. Lots of things are swimming around in my head.......

I will see how this NHS referral goes and let you know. I hope you get pregnant again fairly soon and luck works for you this time!

Take care x

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