A little scared

[Clare.T]

Karen writes

<div class='quotetop'>QUOTE</div><div class='quotemain'>

Hi, I have never done this before so please forgive me if it takes a while for me to get the hang of it.
My name is Karen, I am 35, I had a miscarriage in 2000, a beautiful baby boy in 2004 but he was born with several heart defects and died at 15 weeks old. Since then my husband and I have started trying again and I have had a further 3 miscarriages. Last week I got told by a doctor at Manchester hospital that I have lupus.
We are so desperate to have a brother or sister to our little one that we lost.
Please could anyone tell me if they have been able to get pregnant and carry full term even though they have sle.
I have the rash on my face and joint pain. They have started testing with bloods, x-ray and an ecg machine to check if it has started to affect anywhere else. I go back on the 26th of April, so will no more then.

Thank you
Karen
[/b][/quote]

Clare

[Clare.T]

Welcome to the forum Karen !

I am so sorry for your losses ~ my heart goes out to you. style_emoticons/<#EMO_DIR#>/hugbetter.gif

It is possible that lupus was responsible for your great misfortunes but I am sure you will get more information on your next visit. I expect the doctors will have checked the reports on their deaths to see if they can be linked.

There's a blood clotting condition quite often found with lupus which can cause early miscarriages, called antiphospholipid syndrome, APS for short. There are some autoantibodies called anti - Ro or anti SS-B, which can cross the placenta and cause heart blocks, although it seldom happens.

All lupus pregnancies are high risk in that more is likely to go wrong with them than with healthy pregnancies but these days the chances of success are very good with expert treatment. The important thing is to know what's going wrong and get the lupus stable before trying again.

Meanwhile, start reading up on the basics of lupus to get a better idea of what the docs are talking about.
But onlyu on reliable sites like this one and http://www.lupus.org which is the Lupus Foundation of America's website. There is also LupusUK's website at http://www.lupusuk.com which isn't so detailed as the LFA. The amount of information can be overwhelming so don't hesitate to ask here for 'predigested' info.

Do not read anything older than the past few years - there are a lot of out of date sites out there and always were a lot that were useless. Please remember too that most of the people who post here and are already diagnosed, have on going problems so they are are not truly representative of the general lupus population.

We will help you all we can along the rocky road so please let us know how you get on.

Bye for now

Clare

PS To reply to this please use the +ADDREPLY beside NEWTOPIC at the bottom or top right of the page. style_emoticons/<#EMO_DIR#>/smile.gif

[alobreto]

Hi, Karen. style_emoticons/<#EMO_DIR#>/smile.gif
And welcome to the forum!

You have experienced some heart breaking losses and my heart goes out to you, as well as my hand extended in friendship.

You've been given sound information here and we look forward to hearing more from you.
Best personal regards,
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[pnutts]

Welcome Karen

I'm sad to hear of all your losses. I have sle and have had two very successful pregnancies. I was considered high risk and monitored very closely. I do have the blood clotting issues so I was lovenox injections daily.

I hope they can figure out soon what is going on .


Cath

[damarissmith21]

Hi Karen style_emoticons/<#EMO_DIR#>/tongue.gif

I am sorry to hear about your loss because I already have 9 miscarriages. There is an excellent doctor in chicago, which is a specialist name Dr. Coulam. Go to the site Sims and call the office. Explain everything to her and she will do all kinds of test that no one else will do. Do not try to get pregnant again until you have all the test done. Nobody said anything to me and because I already had nine miscarriages, now no doctor wants to take the risk of treating me. My sister is going to be my surrogate mother and we are happy about it. Don't give up, you still have a chance. Good luck, Damaris style_emoticons/<#EMO_DIR#>/wavey.gif

[Karent]

Hi everyone, thank you for replying to my first message.

I have now been told that I do have APS as well as the SLE. I was also told last Thursday by my Gynocologist that when I was giving birth to Jamie, the baby we lost at 15weeks of heart defects, my kidneys failed. They thought it was an infection at first but now it seems not.
As our dream for a family seems to be getting further away now, can anyone give me some advice on pregnancy with having APS and SLE.
After 3 miscarriages we are at the miscarriage centre on Monday and can anyone think of questions I need to ask etc.
Thank you all very much
Love
Karen

[Mootie]

Dear Karen,

I am sorry to hear about your dx and the problems you have had. I will be thinking of you both and I hope that the Drs will be able to sort through the issues.

You have lots of company and support here and I am sure that there are others here that have been down the same road as you who will be able to give you some good advice.

Good Luck to to you.


Mootie

[jm_jazzy]

Dear Karen,

My heart goes out to you and you need to make your own decisions.

here is some more useful links:

http://www.apsfa.org/pregnancy.htm

http://www.arthritis.org/research/Research...nting_lupus.asp (http://www.arthritis.org/research/ResearchUpdate/05Jan_Feb/preventing_lupus.asp)

Now, your doctors will be able to tell you more but much research seems to indicate with the correct treatment and monitoring you can sustain pregnancy. However whether you feel like you can do it is another thing and whether you can at the moment is a very careful decision you need to make with your partner and your specialists, as it is better not to be flaring.

Good luck.

jm style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/wub.gif

[Clare.T]

I'm very sorry that it looks as though things are more complicated than you feared. ((((((((( Karen ))))))).

It sounds as if more information is needed about the kidney problems, so I don't know what questions you can ask at the Centre or rather what answers they are able to give.

I wonder if there is any communication between them and your lupus doctors and if they deal with high risk pregnancies.

I would say you have to know exactly what your lupus status is and get the disease well controlled.

Let us know how it goes and wishing you tons of luck.

Clare

[Karent]

Hi Cath

Thank you very much for replying to my message. I was wondering if you would mind telling me about your two successful pregnancies. I know I have SLE but I saw a consultant at the recurrent miscarriage centre yesterday in Liverpool (not sure where you are from, sorry) and he says all the blood results have come back as having Lupus anticoagulant and anti-phospholipid antibodies. All he has said is to try again, and then at a positive pregnancy test take 75 mg of asporon and start daily injections of heperin.

I don't know what lovenox is I'm sorry.
I hope you don't mind me asking.

Thanks
Karen







<div class='quotetop'>QUOTE(pnutts @ Mar 6 2006, 04:02 PM) Quoted post</div><div class='quotemain'>
Welcome Karen

I'm sad to hear of all your losses. I have sle and have had two very successful pregnancies. I was considered high risk and monitored very closely. I do have the blood clotting issues so I was lovenox injections daily.

I hope they can figure out soon what is going on .


Cath
[/b][/quote]

[lupy lulu]

Hi Karen,
I am so sorry for your losses !
previously to being diagnosed with sle and aps. i too suffered 7 miscarriages . I was under the care of st james at leeds when when we realised what was happening .
As soon as i had a positive result with my 8th pregnancy they started me on Asprin and daily heperin injections for the aps and also 30mg prednisalone for the sle. This pregnancy was very closley monitered , i had to have a scan every week if not every other and during the 3rd trimester they would do a doppler scan ... this was testing to make sure the blood was flowing through the placenta ok.
What im trying to say is... now that you are diagnosed there is a much better chance that you will carry a healthy baby full term ., my son is now 4 and things can have only got better in the world of modern medicine even since then. What i would advise you to do is get the Lupus under control before you concive again... give your body the best chance.
I really wish you all the best with this ,i remember too well the devastation that is involved wih recurrent miscarriage it is a soul destroyer.. but please dont let it destroy you keep fighting, im confiedent you will get there in the end !
Love Lucy x style_emoticons/<#EMO_DIR#>/flowers.gif

[jude mack]

<span style="color:#993399">Hi Karen

Welcome. I'm sorry to hear of your losses. I to have APS, and had four miscairrages. But now that you know you have APS, the doctors will watch you very closely through any future pregnancies. Wishing you the best in having your family.

Take Care
Jude style_emoticons/<#EMO_DIR#>/flowers.gif </span>

[LWL2002]

style_emoticons/<#EMO_DIR#>/foryou.gif ......Hi Karen....Im sorry for your loss......i think in time you will be able to have a baby! I have a friend that has had lupus since the age of 9 I think and she is now 21...She had a set of healthy twin girls! They are now five years old and doing great! Also very cute too! style_emoticons/<#EMO_DIR#>/biggrin.gif ......Actually I think she is 23 now. take care and good luck!.....Laura (LWL2002) style_emoticons/<#EMO_DIR#>/flowers.gif ......

[Karent]

Hi Lucy, thank you so much for this reply. Hope you don't mind me bombarding you with question - what are your symptoms of SLE for you to be on 30mg of Prednisalone ? and how old are you ?
I am 36 and had 4 miscarriages, and a baby boy who died at 15 weeks of heart defects.
I worry that I am getting older and our dream of a family is getting further. The consultant has said to try again, but because each miscarriage has been at 6 weeks he is not going to wait till I am 7 weeks before starting me on heperin injections. He will start them as soon as I have a positive test. Is that what they did with you ?
My sysmptoms of SLE are - the butterfly rash that comes and goes, joint aches, and chronic fatigue.

Thanks again for taking the time to reply.

Love
Karen
x

<div class='quotetop'>QUOTE(lupy lulu @ Mar 28 2006, 04:54 PM) Quoted post</div><div class='quotemain'>
Hi Karen,
I am so sorry for your losses !
previously to being diagnosed with sle and aps. i too suffered 7 miscarriages . I was under the care of st james at leeds when when we realised what was happening .
As soon as i had a positive result with my 8th pregnancy they started me on Asprin and daily heperin injections for the aps and also 30mg prednisalone for the sle. This pregnancy was very closley monitered , i had to have a scan every week if not every other and during the 3rd trimester they would do a doppler scan ... this was testing to make sure the blood was flowing through the placenta ok.
What im trying to say is... now that you are diagnosed there is a much better chance that you will carry a healthy baby full term ., my son is now 4 and things can have only got better in the world of modern medicine even since then. What i would advise you to do is get the Lupus under control before you concive again... give your body the best chance.
I really wish you all the best with this ,i remember too well the devastation that is involved wih recurrent miscarriage it is a soul destroyer.. but please dont let it destroy you keep fighting, im confiedent you will get there in the end !
Love Lucy x style_emoticons/<#EMO_DIR#>/flowers.gif
[/b][/quote]

[francisca]

Hi karen,
I also never did this before but I was reading the messages and i felt like answering you...
I'm 30 years old and I found out i had Lupus when I was 18 so you can imagine I've been through some bad moments. Well, I just wanted to tell you that on 18th January I had a beautifull baby boy and taht we are both geat.I 've never felt so good.So good luck to you and don't give up.
love,
carla

[roberta dollman]

[Hi everyone,

My name is Roberta and I was dx six years ago. I've just discovered this site and I'm so happy to have found it. I'm from South Africa where SLE is still considered rare so its really nice to read all these postings.
After a third miscarriage at 10 wks, two weeks ago I feel just about ready to give up on having a baby. It's just too painful style_emoticons/<#EMO_DIR#>/tantrum.gif and frustrating. I was on aspirin and heparin daily injections from my 5th wk of the pregnancy and still I lost it. Have any of you had a successful recent pregnancy in spite of having APS?

Roberta

[cath]

Dear Roberta,

Hi and welcome style_emoticons/<#EMO_DIR#>/flowers.gif

I am so sorry to hear about your miscariages, especially the last. I can't imagine how hearbreaking and frustrating it must be for you, especially since you got treatment last time.

Do you have an obstetrician who specialises in high risk pregnancies? Whereabouts in SA are you? I don't know how the system there works but in the UK, there are some obstetricians who take on the more complex cases. As far as I am aware, you got the right treatment, it is just super bad luck that you STILL miscarried style_emoticons/<#EMO_DIR#>/crying.gif

Did you get testing done on the baby? There are of course many causes for miscariage aside from APS, and even though you know you have APS, the testing may still have some value, just in case you have more than one cause at work here style_emoticons/<#EMO_DIR#>/aww.gif

Please feel welcome here, and we look forward to hearing more from you

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