22 Replies
kvonblon - January 13

My husband and I have had 4 miscarriages in the past 18 months after having a successful pregnancy 4 years ago. We went to see Dr. Mary Stephenson at the University of Chicago Recurrent Miscarriage Clinic yesterday and she's recommending a clinical study using IVIg infusions...we're excited at this possiblity, but has anyone out there had any experience with IVIg as a therapy for secondary recurrent miscarriage?


chynnadoll - January 14

Sorry kvonblon, I don't know anything about that but it sounds great, I wish you the best of luck, keep us updated and informed...Take Care...China


celina - January 20

yes, I had ivig in october 05 after having 5 miscarriages after two natural pregnancies - daisy 7, oscar 5. After all my miscarriages we decided to try ivf because suddendly I just could not get pregnant and after 3 unsuccessful attemps they found out I had a very high level of NK cells and thought ivig and prednisolone would be a good idea. I did get pregnant but sadly lost it at 6 weeks. I really think it is worth a go, we are going to try one last time in a month or so, with our two remaining embryos. Dont panic, its completely painless, does make you feel a little drunk for a few seconds to begin with, but really is no big deal at all and hay, it may make your dreams come true, so surely its worth a go. I have heard some real success stories with people that have had ivig. One lady had 23 miscarriages and has just delivered a perfect little girl. I really wish you all the luck in the world - its exciting.


kvonblon - January 21

Oh, celina, I'm so sorry to hear of all your miscarriages and the loss with the ivig, but so glad to have read your post! I've been doing so much research, but have spoken to no one who's had the ivig, and someone on another msg brd scared me saying some people have died from the infusions. but i trust dr. stephenson and know that we are with her because God led us to her and i just pray that we benefit from her knowledge and skills and come out on the other side with a baby...like you said, it may make our dreams come true. isn't it crazy to have these problems after having normal pregnancies - it is my deapest desire to have another baby so that Jackson, 4, can grow up with a sibling and we can experience the joy of another child. Where did you do your ivig? and can i ask if you had to pay for the infusions? I will pray for next attempt with your remaining embryos and hope that you'll be able to share good news in the near future.


celina - January 21

Hay this is fun! hello again. To answer your question - I have been treated at the Lister Hospital in London and the ivig was done at home with a nurse. Yes, I did have to pay it cost just over £1,000. Did not like the sound of someone dying after infusion - my biggest dilema is - should I stop trying for something that obviously is just not meant to be. I had my first baby at 25 the first month we started trying and my second at 27 again the first month we started trying and then since the age of 30 have been trying very hard with very bad results. I am now nearly 33 (in march) and have two children that are a complete delight but why wont that longing for another go away - I wish we had never started trying. The worst thing was the ivf people kept on promising me a baby at the end because they said I was so fertile - boy were they vwrong. Why did I have to suddenly get these ridiculous killer cells? I so want to shut the door and be so thankful for what I have but i just can't. The good news is that without a doubt it has made me a better person - I look at everyone in a completely different way now, I no longer judge people or am opinionated because I have learnt an enormous lesson in humility and maybe that is why all this has happened to me. Anyway, ivig is so worth a go, even if you have to save like mad, it would be so exciting if you got pregnant! Why did your specialist advise ivig and do you have to take steriods as well. What country do you live in? fingers so crossed for you. x


celina - January 21

Just read your original message and realised you live in chicago - sorry, think I lost a few brain cells with all these miscarriages! x


kvonblon - January 22

Hi! Actually we live in Indianapolis, 3 hours south of Chicago - do you live in London? I have thought after each m/c that maybe we should stop trying. We have a four year old who is perfect (and who was also conceived and delivered very easily), and maybe I should just be happy with our family the way it is...but I don't want Jackson to grow up an only child (and his chances for cousins is slim), so I will do what I need to do to try and have another...for Jackson and for us. I don't understand these killer cells either, and wsa questionning why this had to happen to us when so many people get pregnant and have babies without so much as a thought! But I have decided that God helped lead Dr. Stephenson to Chicago 2 years ago and has now led us to her...and if we get to do the ivig, we can get into her research study and won't have to pay for the infusions, which is such a relief for us. I know that longing feeling that you spoke of, how it won't go away. And each time one of my friends gets pregnant, it seems to be stronger - that's what has been hardest for me...being happy for my friends who can get pregnant and carry to term with no problem - it's hard sometimes to be sincerely happy for them, but it's getting easier and I take that as a good sign also. I hate that the ivf people promised you a baby - they should never do that, because they can't guarantee something like that...unfortunately! You are good to feel that you have been so tested and come out all the stronger for it...
Our doctors (Dr. Stephenson makes the 4th we've seen since this all started) have run the gammet of testing and all tests have come back normal. Dr. Stephenson is an ob/gyn and reproductive immunologist and has now run a few more tests - she's leaning toward my immune system attacking the developing placenta/fetus and that the ivig will help with that. no one has diagnosed natural killer cells, but i think that's one thing they're testing for now. We go back to Chicago in 2 weeks to get all our results and to make our plan. She didn't mention using steriods - did you do steriods and what were they for? Were they injections or oral? In our two most previous preg/miscarriages we did heparin shots and aspirin as the docs thought that might help...obviously didn't.
I'm so glad to have "met" you and hear your story - it's comforting to talk to others who've been through and are going through similar things - no one in my life circle has had anything like this and sometimes that makes it so much harder.
Something funny to end with - when we left last week for our appt in Chicago, our son told us that he wants to go up and meet the doctor sometime because he wants to make sure she knows that he wants twins... he can always make me laugh!
In my prayers,


celina - January 23

Hi Karen, its so nice to have a friend in the same predicament. We used to live in London but three years ago we moved to Suffolk about three hours north east of london to the country. Thats when we thought it would be nice to try for No. 3. Let me tell you about steroids, I was treated with Prednisolene which is an oral steroid that lowers the immune system and is used to treat ashma etc. It has been proven to reduce the NK cells in peoples bodies. I took that a week before ovulation up until I had the m/c and did the ivig around the time of ovulation. There was an American specialist that was having great results doing ivig and IVF together, starting the ivig about 6 weeks before embryo transfer but they found that it greatly increased your chances of developing cancer, so that is now not done - thank goodness. You have to ask yourself how far you are willing to jeopardise your own health in the search for something that may just not be for us. This is something I continually battle with. But i would really like you to read something for me before you go back to Chicargo - its a book called Miscarriage - what every woman needs to know and is by a woman called Professor Lesley Regan and you can get it on Amazon. I have just found out about her and she runs the largest miscarriage referral unit in Europe and is amazingly knowledgeable. It is so frustrating I have only just found her because her unit is actually based at the hospital that I had my son. Anyway, I spoke to her secretary today because I was becoming increasingly worried about our next and final ivf attempt with ivig and wanted a second opinion. Unfortunately, she cannot see me until April, but has made me promise not to do ivig. She says that her unit absolutely disagree's wholeheartedly with the ivig theory and that there are no grounds at all to put women at risk when there has been no hard evidence to suggest that ivig actually helps. They cannot get enough women willing to do a clinical trial because it is so contraversial. She says that the results can be absolutely disasterous and in some cases cause infertitility itself. This was quite difficult to hear after already doing ivig, but she said that under no circumstances must I do it again. The fertility world are all desperate to find this one miracle drug that will end women's misery once and for all, and everyone has jumped onto the immunology ivig theory. But one needs to stand back and look objectively at all the facts and take the emotional side out of it and say, am I really willing to put myself at risk. I have to say that I no longer want to do ivig again and that I am going to wait for my appointment with her to see what other options are available. You really have to read the book - its so informative about everything. Ask you doc about steroid treatment as a first plan maybe before rushing into ivig. When I was told about ivig, I just wanted to be given it immediately and get on with being pregnant but looking back I can see that I was not in a fit state to look at it objectively - I just wanted to be pregnant and I so wanted ivig to be the answer to my prayers. I had heard about this girl who had had 23 m/c's and thought yes, this is definately the way for me. - but who is to say that just maybe it was that girls time to have a baby and maybe she would have had one anyway. I certainly want to be around for my other children rather than risk my health with something that is a complete trial at the moment. The medical world are all using us as guinea pigs and i think it should be decided with great caution. Oh Karen, I don't know. Its just so difficult, but I so wanted you to know what I have found out today. I wish you lived at least in the same country as me, but please keep writing. It is so nice to have somebody trawling the internet too trying to find out everything possible - but the internet can be a dangerous place when it comes to miracle stories and wonder drugs. Please get the book. x x


kvonblon - January 23

thank you for your words and advice. it's amazing the amount of conflicting information you hear about something, one person says it's great and another says run away as fast as you can...guess that's what happens with something still unproven.
i am compling a list of questions to ask when we go back to Chicago. i don't want to do anything that will put me at risk as i want to grow old with my husband and be here for my son. the ivig is definitely not set in stone for us yet - we don't even have all of our final test results back yet. what exactly, besides infertility, did the clinic you spoke with yesterday say could happen as a result of the ivig? part of me says we should just continue as we've been and if it's to happen, God will make it so. I just don't know. And to make a decision before sitting down and talking with Dr. Stephenson again would be premature.
I will get the book you mentioned. i found it on amazon, and will get it ordered. the more you can arm yourself with information, the better off one will be.
thank you again for the information - it's so nice talking with you - and having someone to exchange info with!


celina - January 23

I am going mad, why did I think you were called Karen, sorry. Anyway, read the book, it will tell you everything you could possibley want to know. I was told that some people have had appalling reactions to the blood product, she did not say what exactly, apart from it was the worst nightmare come true! It is just such a hard decision to make, but definately be armed with the facts. The only thing they told me at The Lister about ivig was that it had to be admistered at home and that a nurse had to stay with me for six hours and when I asked why, they said, to make sure you don't have a reaction to the infusion! So it obviously does happen. Something else I found out today, is that alot of research is now being done on secondary infertility and previous male babies. They now are begining to think that male embryo's sometimes switch the mothers immune system on in a way that kills all subsequent pregnancies because it tries to fight the male genes that it sees as foreign. Ask Dr. Stephenson about it. I know what you mean about wanting just to let it be and see what happens, but what worries me about doing that, is I think I will probably be on m/c No.20 by the time I am 35! I have a feeling that now I have had 5 things are not just going to change by themselves and I am suddenly going to get pregnant and manage to keep it. oh the dilema goes on! I am now going to read my book and will update you if I find anything unbelievably interesting. If only I took my studies as seriously as infertility, I would have got straight A's. Go and give Jackson a cuddle and realise how lucky we both are! x x


celina - February 16

Have you been to see Dr. Stephenson yet? Let me know how you get on - would be so interested to hear1


kvonblon - February 16

Hi! Nice to hear from you! We were back to see her a week ago, our tests are looking toward IVIg as an option, but a few more have to be complete before that option is given to us. We've been spending our time doing a lot of research about the treatment and talking to a lot of people who've had it and some pharmacists who know a lot about it. I feel like we're becoming as informed as possible. She is checking now on my lupus anticoagulant as it was at a boarderline level with my previous blood tests and also to see if I make the IgA antibody as if I don't make that, the IVIg is not advisable as it will most definitely cause adverse reactions. So we're still in the waiting and learning phase.
got the book you recommended - but as I've changed jobs in the last couple weeks and my son has started hockey/skating lessons and has been chock full on the weekends with birthday parties to go to, I've not been able to complete it. Hoping to complete it by the weekend (If I can stop watching the Olympics, that is!!)
How are things for you?


celina - February 22

Hi Kira,

I know what you mean about the Olympics, my daughter daisy is addicted to the Curling of all things!! So, I have an appointment on 16th March to see a specialist at Professor Regan's clinic in London where they are going to test me for everything under the sun by the sound of it. I have only ever been tested for an autoimmume disorder and they want to make sure it is only that and not other things as well. Knowing me, I will probably have the lot!! I have to have an Antiphospholipid Antibody test, TEG studies, Factor V Leiden and Activated Protein-C Resistance tests. Does that mean anything to you - I have no clue about any of them at the moment but I do know that I have to have two of the first tests eight weeks apart, which means no baby making for a long time yet! Everything just seems to take so long, I am so impatient I want to know everything now. I so want to hear about what you have found out about ivig and whether you will do it or not. I have not completely ruled it out but I don't think it will be an option at St.Mary's because they are so against it. I wonder what they will suggest? The nice thing is I am at last beginning to get on with life and don't feel as though it is dominating my every thought anymore. It is quite weird though, I have three friends now that started trying for a baby the same time we did with No. 3 and they are all now having their second babies!! Time flies. We bought our daughter a pony for christmas and I have taken up riding again as a distraction and just booked a holiday to Cape Town for Christmas - secretly hoping we won't be able to go, but at least if we can it will be fun! Please stay in touch and hope all is well.


Fortyfour - March 5

Hi there. I just wanted to let you know that we were considering doing IVIG for repeated m/cs but when they did the blood work it should that the ivig only reduced my nk cells by 2 %. They are 30% and should be under 15%. Good luck. I also infuse IVIG as a nurse on a weekly basis. In 20 years I have had noone die of an infusion but some people had bad allergic reactions that caused flulike symptoms and nause/ vomiting, hives and trouble breathing. We use benadryl and tylenol pre infusion to help avoid this. ( they should also test for IGA reactions before infusing) The new Gammagard liquid had the least amt of sideffects that I have seen. Mostly tiredness and headeache. Take care and baby dust.


morgan1 - March 9

Hi there-
I was just doing a web search and discovered this site. After 6 devastating 1st trimester miscarriages, my husband and I finally found a specialist who diagnosed us and treated us effectively. I was put on every treatment there was - IVIG, prednisone, aspirin, progesterone, lovenox (heparin)- and we finally had a healthy baby boy a year ago. We aren't real sure which of the above treatments was the thing that made this happen, but we are ecstatic at the results. I am now 18 weeks pregnant again, and was put on the same treatments. I recently went to a perinatologist to make sure the baby is doing fine (which HE is) and was told that I should stop the IVIG and prednisone. I was relieved because both treatments have bad side effects for me, but at the same time I am scared that stopping one of those treatments could harm the baby - and I DONT want to miscarry again. The perinatologist thinks the IVIG and prednisone both could harm the baby more than help. Once again I am wondering what to do and which doctor to listen to. It seems sometimes like there are a lot of differing opinions on these treatments and it is hard to determine who to listen to. My one year old is perfect - the treatments didn't affect him at all. But I also don't want to subject this new baby to any unnecessary class C drugs. Any advice would be helpful.


fiso - March 9

Hi Morgan1. Sometimes you feel that you have no control over things and that you have to listen to the docs. In your case, I would listen to the doc. Your goal is to have a baby, but not at any price, if your baby has soem health or developemtnal problems later one. This is my opinion, I can't decide for you!

Fourtyfour, how are you? What's new with you? Any new treatment....?



Fortyfour - March 10

Hi Fiso, Congrats. I posted to you in another section but I guess you did not see it. We are seeing the doc on the 24th for a consult to see when we should do IVF. My immunologist gave us the green light to go ahead. Yeah. We need to do ivig with the cycle so we are researching costs and if our Tricare will cover the ivig. I am excited and scared at the same time. I dont want to go through another miscarraige. It took me 5 months to feel better after the last one. My hormones have been out of wack. I feel confident that this time it will work though. I am going to start the accupuncture to reduce my natural killer cell levels since they are elevated and have been taking fruit and veggie pills to help that also. I will have to do heparin, folic acid, progesterone and estrogen with this pg. I will be one giant pin cushion thats for sure.

Happy belly growing and maybe I can go downstairs again and stay there. Take care all. Baby dust to all.



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