just found out

[cala]

hi ive just found out ive got lupus though my specialist doing tests cos i had 6 miscarriages in 2 yrs and just lost one at 11 weeks, 4 weeks ago.. ive also got endimetroisis.

what symptoms is everyone having?.. not sure what to expect or anything..

any advice would be great

thanks.....

[Paul_Howard Partner LUPUS UK]

Hi Cala,

I would be happy to send you one of our free information packs which will help you to understand the condition better and hopefully give you a better idea of what to expect as well as tips on how to manage? If you would like me to do this, just send me a private message or email [e-mail] with your name and address.

[daisyd]

Hi Cala have you got Hughes syndrome as well asking because of all your miscarriages which must have been awful.

There is a site on here Hughes syndrome might be worth taking a look

[cala in reply to daisyd]

No i haven't got hughes syndrome. I was tested for that. Thanks. Misscarriages there saying are down to lupus.

[mkw30]

Hi Cala, sorry to hear what you are going through, I myself just lost my baby at 12 weeks due to Lupus. Lupus affect everyone in different ways, from skin rash to joint pains to kidney problems and a lot of other stuff. so know one can tell you what is going to happen to you. the best thing you can do is educate your self about lupus as much as possible. keep a note of any new symptoms. and make sure to attend all doctors appointment. I have only been diagnose for just over a year, and still trying to come to terms with how much my life has changed. I am hear if you need to talk feel free to message me.

[cala in reply to mkw30]

Thanks.

[Butterflywings]

Sorry to hear about your losses, I miscarried two years ago so I cant begin to imagine how hard it must be for you having suffered so many, you must be such a strong person. When I was first diagnosed two years ago my symptoms were joint pain and migraines with aura, the other thing they mentioned was the rash I had on my hands but I had that on and off for years. Since being on medication including biological treatment (RItuximab) I rarely have joint pain now, and the last migraine was over a year ago, so I do feel things are stable - although blood results are still a bit off (white bloods all over the place), but I don't notice symptoms as much myself except the fatigue that can be a pain in the backside! I also have APS (sticky blood), have you been tested for that as I know that can affect pregnancy and they can give you medication to thin your blood to help, I am now on daily aspirin and will be put on blood thinners when I get pregnant. Wishing you all the best.

[daisyd]

APS, Hughes syndrome, sticky blood are all the same condition different names same condition.

The test for it isn't very good yet, some people have it and their blood doesn't show it up.

Worth asking again,

[littleeffie]

Hi cala,

I can really understand how you feel about the miscarriages. I had 11miscarriages including the twins to two of my boys. I wouldn't give up so although a few years between daughter now 29 ,son 24 (lost his twin at 14weeks) ,son 13 and son12 (lost his twin at 7weeks) .It is tough ,very tough but with helpful health professionals and finding inner strength from wherever you can will get you through it. I think it is the only way to deal with every part of lupus .I hope that you get the help you need to carry on with the way of life you want.

Take care x.Thinking of you with hugs.

[cala in reply to littleeffie]

thank you all... this now explains a couple of symptoms ive been having for a bit now.. x

[Penelope-Mary in reply to littleeffie]

its sad but reassuring to read similar stories. I was diagnosed with lupus and Hughes Syndrome when I was in my 40's but must have had it whilst I was having my children : I had 3 miscarriages , 4 children but lost a twin at 7 weeks with my second child and a twin at 20 weeks with the fourth.

I'm sure with low dose aspirin and in fact prednidolone it can now be managed better.

All the very best.