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Hi all, I had my 1st rheumy appt yesterday and I'm soooo relieved. I'm officially diagnosed with APS!!! She said that the joint pain/inflammation/redness is very possible caused through this (I never knew this, so confident that I don't have lupus now) but I had more bloods done to check for lupus just in case. She gave me a thorough examination, fair play, and apparently I also have hypermobile joints which could ALSO be causing the pain. 'Luckily' I still have a very slight livedo rash on the back of my hands so she could see what I was talking about, apparently it's very specific to APS and lupus? As I am now 25 weeks pregnant I've had no joint pain for 17 weeks, so I have another appointment after baby is born as I'll probably flare up again then. I had 6 vials of blood taken for liver/kidney profile, FBC ANA and others so just gotta wait for them to come back now. Does anyone else 'only' have APS and get joint pain with it? I've tried to google it but can't find much about it. Also, as I'm on clexane and aspirin now, does that mean that I will need long-term anticoagulants after the baby is born with this diagnosis? Many thanks xx
Rhi xx
 

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hi there

I have APS along with my lupus, but my sister only has APS. APS can definitely cause joint pain, although it is not often written about from what I can see. You will need to talk to your doctor about what treatment you do (or don't) need for APS - generally if a person has not had a clotting event of some type they take aspirin, but if they have had a clotting event then they are usually placed on coumadin (warfarin).

Pregnancy problems are not usually taken into account when deciding whether to use aspirin or full anticoagulation, as obvious when you are not pregnant there is no pregancy to protect (which is why clexane is being used).

You really do need to talk with your doctor about treatment post pregnancy, as it will depend on your own particular circumstances. I am on coumadin as i have had clotting events, where as my sister in on aspirin as she has not had a clot (though she did loose a pregnancy at 24 weeks).

congratulations on your pg, best of luck with it all - clexane really does work really well

hth

raglet
 

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Thanks for your reply x I'm sorry for your sister's loss, was APS given as the cause? They said it could be the reason I lost my little boy and the 3 subsequent miscarriages. Does your sis get joint pain too? I will definitely ask the doc about treatment after the birth and beyond, should I ask the rheumy or GP though?
I feel so guilty for being relieved that the rheumy is confident that I only have APS and not lupus, I know it has it's own complications in itself but I would rather that than lupus if that makes sense, wouldn't wish any of it on anyone. Hope I haven't offended anyone and that I'm making sense, my head is really foggy at the mo so I apologise if my words haven't come out right x
Thanks again x
Rhi xx
 

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Hello Rhi,

I'm glad your appointment went well and no, I doubt anyone will be offended, I think most of us would be pretty happy not to have lupus and can well understand that :)

I hope everything continues to go well and keep us posted on how you're doing,

Katharine
 

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my sister's pg loss was many years ago, and it is thought that APS caused it. She doesn't have joint pain, but in the 20 odd years inbetween she hasn't had any problems with clots and just takes the aspirin preventatively. Sometimes it just affects a person during pregnancy, but with others it continues to be a problem after pregnancy, it's hard to know what the pattern is going to be.

The reason I know about the joint pain and APS is that I used to post on an APS board - I learnt a lot from that board. I don't know how active it is these days, but here is the link to it

http://forums.delphiforums.com/APShelp

Kay, whose forum it is, wrote a great book about the syndrome.

I had multiple miscarriages, but fortunately mine were all in the first trimester. I have had clots subsequently, which is why I am on coumadin.

The Hughes Foundation is a great site if you have not already found your way there

http://www.hughes-syndrome.org/

the Brits call Antiphospholipid syndrome Hughes Syndrome, but the name hasn't really caught on elsewhere - a pitty really, it much less of a mouthful.

hth

raglet
 

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Hi Rhi

I am so pleased your appointment went well & it turned out to be 'just' APS. :) I don't blame you being relieved it's wonderful news,I'm so happy for you.

I'm sure your rheumy will look after you once your baby is born rhi regarding medication.....my sister also has aps, she has been on warfarin for years but has just been changed to fragmen..she doesn't have any joint pain at all but I assume everyone is affected differently..she has more problems with keeping her blood stable as she has had a few dvt's & a pulmonary embolism (sp?)

I hope you are keeping well rhi & I can't believe you are 25 weeks pregnant already! :eek: I remember you posting when you were first pregnant! wow time flies :rolleyes:
take good care of yourself
love karen x
 
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