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Discussion Starter · #1 ·
Hello All,

I'm Charlene, I'm 32 and live in South Australia with my beautiful 8 yr old Emily, my gorgeous hubby Mark, Our Rabbit Jeffrey Pot Pie and about 50 odd birds. I've just found out I am pregnant with no 2 (6weeks) Hubby got me on the first attempt and is very proud of himself LOL!

Well I'm recently diagnosed with SLE but unfortunately I'm not new to the Lupus round about.

My dad was diagnosed with end stage (renal failure) SLE in 1997 and unfortunately passed away in 2001.

I have been ill for 2.5 yrs. Firstly I had a car accident in Dec 2006 and was bedridden for a couple of months with a brain injury. 5weeks after returning to work I caught Ross River Virus whilst on a business trip to Sydney and I haven't worked since March 16th 2007 (I'm lucky to have income protection insurance ;) But all this inactivity and never ending pain caused me to put of 40kg.

The Ross River knocked me for a six and nothing was working, I kept screaming I HAVE LUPUS but my ANA and ENA kept coming back negative. After 2 years of this and the certainty that I wasn't been properly treated (and suspected that my younger sister also had lupus) I changed specialists and labs! My new Rhuemy did her thesis on Lupus/Sjogrens and explained that a negative ANA doesn't necessarly mean you don't have it and vice versa. It turns out that between us my sister and I have 10/11 markers, but we have different ones, I have fatigue she has bad athritis, her hair falls out I am photosensative, I get ulcers etc. . . .

My Rhuemy asked for copies of my old tests from my GP and followed up with the lab and it turns out that one of the SA labs doesn't report a postive ANA until you have titre 160 or higher *rolls eyes* I had and ANA of 80 for the past 12 months which with my family history and symptoms screamed a big fat positive! My sister got her diagnosis 2 weeks after me, her ANA is 1280.

I've been on Plaquenil for a few months and I call them my magic pills, my sister is loving it too. Initially I was put on 800mg a day (2 tabs 2x day for 2 weeks) to give me a boost. I lasted about 9 days before dropping the dose back to 400mg - I had no appetite, severe nausea, vomitting and what can only be described a liquid chemical poos (sorry if TMI)

I stopped taking my ibuprofen when we started trying to conceive and subsituted it with panadol osteo and honestly find the combination a little more effective (as has my sister) I've dropped my plaquenil dosage to 200mg a day since the pregnancy has been confirmed and my Endocrinologist has but me on 100mg a day of aspirin to help make the pregnancy stick - apparently she has a very high success rate with this.

What else am I on (what aren't I?)
400mg daily of Osteo D
Neo B12 was having injections every 5 days, have been able to cut down to 1 tablet a day
Co enzyme Q10
Folate

** oh yeah forgot about the 20ml of fish oil daily *** Ewwww anyone else on it?? It sux!


I've also got a totally unrelated insulin problem, after much study it seems my weight gain is a product of over active insulin production and not the other way around. I will start taking metformin "within an hour of giving birth" according to my Endo. She did say becoming pregnant may use up some of the excess insulin and I might see some results and I'm happy to say I have lost 8kg in the last 6 weeks (mind you being in less pain and as a result more active is probably the real reason)

Anyway I just rambled waaaaay too much LOL! :wink2:
 

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Hello Sally and :welcome:

Wow, you have had a lot going on in the last few years. I'm sorry about your diagnosis and that of your sister but I'm sure you are relieved to be diagnosed earlier rather than later especially in light of what happened to your Dad :(

It is not unusual for a lab to "register" low positive ANA and indeed most rheumies ignore the low positives as they can be present for so many other reasons. It's great that your rheumy has taken family history on board to such an extent and that you are now being treated properly.

Congratulations on the pregnancy :woohoo: I should think that your endocrinologist has put you on the baby aspirin just in case as many people with lupus can also have APS which could be a risk in a pregnancy. It's a good precaution and I wish you all your best with the pregnancy.

I hope you will do OK on just 200mg of plaquenil. I presume that the reduction was on doctor's advice?

bye for now,
Katharine
 

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Hello Sally and welcome to the boards.

Congratulations on your pregnancy and I hope things go smoothly for you. I loved your introduction post and it certainly sounds like you have had a busy couple of years. The flu you mention that you contracted is one I have never heard of. I am glad you were able to get over that and feel better.

Sorry about your dad and of course the diagnosis for you and your sister. I have many siblings and they are all a picture of health. Auto immune issues really do not run in my family except for diabetes.

I look forward to getting to know you better. Come join us in the chat room sometime.:wink2::wink2::wink2:
 

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Hi Charlene and welcome.

I am in the early stages of diagnosis so read your post with great interest.

Congratulations on the pregnancy.

You live in a nice part of the world, but it is 7 years since I was there!

Love Jen x
 

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Discussion Starter · #5 ·
Thanks for the warm welcome guys!

Katharine - my former Rhuemy was only ever given a result of negative the lab in question didn't think it was necessary to quote ANA levels unless they were higher than 160, he also felt no need to investigate, hence the swap to the new Rhuemy (she just came home from 5yrs in London Fiona Goldblatt??? anyone? She is amazing) And yes, I've lowered the dose on her instructions, having only been on it 18 weeks :)

Karol - Ross River Virus is not a flu, it is similar to malaria and is spread by mosquitoes, it stems from the infected waters of the Ross River in the Northern territory and can be quite debilitating. It has unfortunately spread to most regions in Australia. They say lupus is not hereditary but my family could probably disprove that theory. My Dad is one of 12 siblings he and his oldest brother both passed at 49 of lupus, 3 other siblings have it. Of my 65 first cousins there are now 13 of us with it. Sjogrens in on my Mothers side, 2 of her 8 siblings have it (she does not) and 3 of my cousins on that side have Sjogren, Dr Goldblatt suspects I may be the 4th . . . . . . .

I think we were born in the wrong family . . .my brother has asthma and eczema and now breathing and joint problems and the butterfly rash (which we do not) and needs to be tested but is stubborn as a mule and talks his way around every marker he has!

Would love to join you all in the chat room but I think the time difference might be a bit of a problem :worried:

Jen - Where in Aus did you visit? I was born in Scotland and have been back and to England a few times. My hubby is and Aussie with Pommy heritage and spent a year living and working in London (yes he is one of those LOL) :rotfl:
 

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Hi Sally,

Welcome to the boards! Congrats on the pregnancy but it does sound like you've been through the mill over the last few years. You do seem to have a great attitude, keep it going!

I'm from Scotland so interested to know where you were born. Don't worry about the time difference with the chat room as there are members from all over the world here. Alot of us also suffer insomnia so there is always someone around for a chat.

Hugz,

Pam xxx
 

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Discussion Starter · #7 ·
Hi Pam,

I was born in Glasgow, all my family are from Barrowfield (sp?) originally (yes the bad part LOL!) My grandparents lived across the street from one another and my parents had been together since they were 14!

I guess I do have a pretty good attitude, I have a lot to live for and my Dad was a great example. The hardest part of this diagnoses for me has been trying to stay in the shade. I've been photosensative for a few years and living 1 street from one of the best beaches in the world makes it VERY hard. Right now I'm feeling the best I have in 3 years, I haven't cried from pain for months. I was quite lucky the plaquenil made a noticeable difference within 2 weeks and I'm still improving!

Where abouts in Scotland are you?

I hate it when I have insomnia - got up to pee at 3am last night and didn't get back to sleep until 5am - The joys of pregnancy! If my fuzzy brain had been working I might have remembered to hop online and see who was here . . . .
 

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Hi Sally,
Welcome to the site. Glad you found the place. Congrads on the new member of your family coming. Are you wanting a boy or a girl? It was wonderful reading your post. I hope that you do well with the changes in your meds and the pregnancy goes very well for you and fast. I hope I get a chance to chat with you in the chat room soon.

Keep us updated on you, your sister, and the baby.
 

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Discussion Starter · #9 ·
onetay;548671 said:
Hi Sally,
Welcome to the site. Glad you found the place. Congrads on the new member of your family coming. Are you wanting a boy or a girl? It was wonderful reading your post. I hope that you do well with the changes in your meds and the pregnancy goes very well for you and fast. I hope I get a chance to chat with you in the chat room soon.

Keep us updated on you, your sister, and the baby.
Hi Tammy - honestly I just want Bubs to be healthy :sad: I'm trying really hard not to worry about the possibility of side affects, but it's hard when I'm being treated like an explosive. My choice of hospital has been taken away from me, I can't do what is called shared care here (half visits with midwife or GP) and I will not be allowed to use the birthing suites with spas and home comforts, it'll be a sterile fully equiped medical room for me *sighs* oh well who cares about the surroundings just have to do what's best for bubs right?

To answer your question we are hoping for 3 or 4 in total so we'd like at least 1 boy. My husband is a Reiki Master/Teacher and he told me he "Reikied the baby in there" he's sure it will stick and that it's a boy LOL!

If he's right I'll never here the end of it, ha ha ha he's still high fiving himself for getting me pregnant on the first go!
 

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Some folks feel that Reiki can cure all illness, even if it is terminal.

I do not discredit anything as I believe miracles can and do happen.

I am also a bit of a skeptic too so who knows.:lol::lol::lol:

Keep us posted as to if this is a boy.

Any names picked out yet?
 

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Discussion Starter · #11 ·
Ha Ha Ha Karol we sound similar - IMO Reiki can't cure anything but there are times when it sure eases the pain . . .although being more scientific than spiritual I tend to think it's the heat from hubby's touch that does the trick!

We're tossing around a few names, we aren't going to find out the babies sex so we get a bit of a surprise in the end. Right now we are trying to keep our excitement in check until we reach the 12 week mark . . . actually I'd rather be 16 weeks before we tell anyone, just in case, but I have a good feeling.

So far our fave boys name is Blake.
 

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Hi Sally,

My Mum's family lived in Barrowfield & pretty much all lived up the one 'close' as they say. I live inthe west end of Glasgow. Do you ever get back here?

Hugz,

Pam xxx
 

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Discussion Starter · #13 ·
I haven't been back for years Pam. Hubby and I were planning on spending 6 weeks in Europe for our honeymoon last year but went somewhere closer to home for 2 weeks instead on Dr's orders . . . this was before my diagnosis and he said find a beach somewhere and relax - no sightseeing . . . .if only he knew LOL! I spent 2 weeks blown up like a bloated fish and struggling with the heat, sun and humidity in Thailand and Vietnamn . . oops!

We'd like to get back one day but right now are building a new house and have other commitments.

My Uncle still lives in my Maw's place (she passed 20 years ago) he's been fighting with the council because they've been demolishing the closes and relocating people while they rebuild - he's a bit reluctant to leave the house he was born in - he's the youngest of the 12 kids and at 44 is still to grow up!

My Mum's sisters and my cousins live in the west end. Not sure where exactly, will have to find out! Actaully might point my cousin Audrey in this direction, she has Sjogrens.
 
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