Recently Diagnosed with SLE

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New Member

Date Joined Nov 2007
Total Posts : 5
   Posted 11/4/2007 7:57 AM (GMT -6)   
Hi Guys,
I have recently been diagnosed with SLE... but by saying 'recently' I dont mean to say it was such a short or immediate diagnosis.
I have heaps of questions and concerns but I will start with some background information first.
Since I was a kid I have had joint pain, as a kid I was told 'growing pains'.  I have always been anemic, had low blood pressure and was particularly suseptable to lung infections.  I would go through regular bouts of dizziness and progressively worse balance problems, especially walking through a hall or something like it, with a tendency to veer to the left. These were all pre-baby symptoms.
Then in 2005 I had my daughter... the most awesome little person on the planet.
Complications started from day one.  about two months into the pregnancy I developed a rash on my face... which wavered in intensity but pretty much was always there right through the pregnancy.  I gained a bit of weight early on... but after three months or so I started loosing weight dramatically while my belly grew rapidly.  I lost over 10 kilos really fast.  Then before my first ultrasound was due I had a massive bleed and thought I had lost my baby.  I was devistated.  But, a little while later we discovered I hadnt with an ultrasound... but... also discovered a uterine tumour.  At this point it was apparently 13cm.  Sounds big huh? Just wait...
The pregnancy progressed and other than some joint pain and creeking knees along with severe weight loss and facial rash it all seemed fine.  It was like I had twins though, I was so big.  The next ultrasound... a month later... showed that the tumour had grown... from 13 cm to 23cm.  As the pregnancy progressed the tumour got larger and larger.  at the last ultrasound it was messured at 30cm+, being so large it was unable to be accurately messured.  A caesar was scheduled for me, as it was obvious I would not be able to deliver her myself.  Not only that... the placenta was attached to the tumour and my daughter was tucked in between the tumour and my ribs.  She was so squashed by it her head was completely mis-shappen.  The ultrasound was booked for March 13th, two-three weeks earlier than her due date.... but it didnt last that long.  A week after the date was booked I went into labour.  about two and a half months premie.  My little darling was born only one kilo in weight :) So tiny.
Anyway... the caesar was an emergency and very difficult.  I had not known I was in labour as the contractions were not what I had expected, they werent at all painful.  I was 8cm dialated when I got to hospital! LOL
It took them a long time to get my daughter out... and such a long time passed that I lost a lot of blood.  A transfusion was ordered for me but never came.  The next day the nurse went to get my up out of bed to walk around and I was so excited to finally see my daughter for the first time.  I was really light headed, the nurse got me up, I took two steps and got to the wheelchair and just as I went to sit down, I blacked out.  I woke up on the floor, barely able to breathe.  I had had multiple P.E.s and spent the next three days in ICU and a week more in hospital before I couldnt bare it anymore, I wanted to leave so I signed wavers etc and was sent on my wway.
After about a week the tumour ruptured and I started haemorrhaging fiercely.  In less than two months I had had more than eight blood transfusions.... by the end of the two months I was having a transfusion every second day.  The public system did nothing and so I went to a private doctor, who immediately scheduled an emergency historectomy.  The tumour by this stage had completely taken over my uterus and nothing could be saved. 
Since then I have had terrible fatigue at times... an almost constant fogginess that I am more surprised when I dont have it then when I do... terrible joint pain which is only ever getting worse... facial rash... sun sensitivity.... chest pains... changing vision... and some strange 'head' problems, such as memory loss/difficulties, occasional speach difficulties which mainly involves stuttering and mixing up letters... for example I may say F instead of B, asthough it were meant to be.  I also experience what feels like having those 'sparklers' in my head.  I have terrible restless legs.... not only affecting my legs but also my arms.  Incredible nerve sensitivity that can drive me nuts, combined with violent twitching.  This happens when I am tired or fatigued.
The other thing is muscle weakness and twitching/ticking.  I will wake up with no strength and it will cause terrible fatigue during the day to the point I can not lift my daughter to the change table, I completely have the will, but no possible strength in me at all. 
OK... I have had all the blood tests and regularly have more... I tested positive to ANA but not the blood clotting ones... Im not sure what exactly I have tested possitive toward.  My inflamation markers have all always been through the roof since my pregnancy... and only one has dropped two points since being on plaquenil.  After seeing specialist etc they have diagnosed me with SLE... but sometimes I wonder... is it really? Do all my symptoms correspond?  I never have joint swelling or deformities, I get swelling but it isnt like the swelling of other arthritis sufferers... it seems more like water retention lol.  I wake up with more pain and stiffness in the morning but have more fatigue by the evening.
Does anyone experience anything like it? Do you have any advice for me?  I need help!
Thanks guys :)
P.S. My daughter servived to be born thanks to that tumour.  Her placenta was attached to the tumour and had it not been there to act like a filter, she may have been affected by the blood clots that I had in my pelvic region.  Miracles do happen everyday :) Its a wonder, with everything that happened, that she and I survived.  I was given the opportunity to 'terminate' after they realised just how many complications there were, including enlarged bloodvessels in my daughters brain.  There was a very big chance neither of us would survive and if my daughter did survive that she would have severe developmental problems.  But I would never ever had taken that option. 
My daughter is not only perfectly healthy and as strong as an ox... but incredibly beautiful and intelligent.
We are so very lucky and I am the proudest mum on the planet.

Miss Magnolia
Regular Member

Date Joined Nov 2007
Total Posts : 95
   Posted 11/4/2007 8:54 AM (GMT -6)   
Welcome, and I am new here also and this place is a God send. I am so happy about your daughter, you sound like a very loving Mother.

I too have much to learn, I am not on any meds to SLE yet as I have just been diagnosed but I am going to see my rheumy Tuesday and my husband is coming with me.

I wish you the best of luck dear, and hang in there, you are not alone. I feel like I have finally found a place where I don't feel like an alien.

Looking forward to posting with you here. Many gentle hugs!

New Member

Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 11:13 AM (GMT -6)   
Hi there,

Wow, what an incredible story. I am so glad to hear that you and your daughter are well considering the ordeal you went through for her to get here!

I don't have a lot of answers for you as I am not diagnosed with anything yet...just in the investigative stages! However, I am curious if the Doctor(s) ran thorough tests before he diagnosed you with lupus? The symptoms you describe are pretty coincidental with lupus, but I just wonder how many tests you had and what the results stated?

I, too, had a rash start on my cheeks with my first pregnancy. I went to a derm. who immediately said it was rosacea. I know that rosacea and malar rashes are sometimes hard to determine the difference. Although my rash does not cover the bridge of my nose, and does not always seem to be affected by sun alone. I've noticed when I'm feeling hot or after I've had a drink (alcohol) or two that it "flares" up- not sure if a lupus rash does that too.....Anyway, it's my understanding that pregnancy can bring out lupus if one is subject to it.

This seems like a great place to gain insight and guidance....I am glad I found this forum! Imagine life before the internet? It wasn't so long ago!

Take care!!!

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 11/4/2007 11:42 AM (GMT -6)   
Hi Ari!
I am more of a "lurker" but I wanted to welcome you and tell you that the people on this board are wonderful! I have learned so much from everything I have read and it has really helped me out a lot! Congrats on your baby. I am so happy that everything turned out ok! Enjoy her.
The one thing that I noticed in your post, I, too have the general all over swelling. My joints hurt, but someone once told me I looked "swollen". That best describes it. I also have multiple severe allergies and if I accidentally am exposed to the wrong stuff, it causes an allergic type reaction. That, in turn, seems to trigger a lupus flare. So, even though I get the allergies back under control, the lupus takes over and I can flare for days. A lot of the flare is a generalized all over swelling. I often say that I want to go in one of those water chambers (for when divers get the bends) because the pressure would push back everywhere at once! I know that sounds weird.
Anyway, welcome. I hope you start feeling better. BTW, the plaquenil took about 6 months to work fairly well for me. I felt better, so I stopped taking it. BIG MISTAKE. That showed me real fast that the plaquenil had been making a difference. I don't know how long you have been on it, but it does take a while to work. Good Luck!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Meds: Plaquenil, Zyrtec, Prilosec, Nasacort, Prednisone, Prozac daily.
Meds: Epinephrine, Benadryl, albuterol (as needed).

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 11/4/2007 1:14 PM (GMT -6)   
Hi Ari and welcome. What an amazing story - it really is a miracle that both you and your daughter survived all of that and that she is so healthy.

I think so many of us go through times of questioning our diagnoses - sometimes I try to convince myself that I am not sick or that I don't have lupus - I think it's a pretty normal thing to go through. So many of your symptoms are consistent with lupus, but if you think it might be something else, it wouldn't hurt tokeep looking into it. Lupus can be such a hard disease to diagnose because there isn't any one blood test that tells you that you definitely have lupus. The joint pain and swelling you talked about are pretty common with lupus - the arthritis associated with lupus doesn't cause joint deformity or damage. It's usually rheumatoid arthritis that causes damage and deformity and sometimes people have both RA and lupus.

The others are right about how wonderful this forum is. We have so many caring and supportive people here. Please ask any questions you have - I know how overwhelming it can be once you have been diagnosed. Also know that we are here for support if you are having a rough time since this disease can be hard on us emotionally too.

Thanks for sharing your story and I'm really glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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New Member

Date Joined Nov 2007
Total Posts : 5
   Posted 11/5/2007 1:19 AM (GMT -6)   
Hey guys.... thank you so much for the warm welcome :)
Im in australia... Im not sure where all of you guys are.  As far as tests go, for some reason we are behind the US :(
Testing was done... and concluded by a rheumy (LOL love that word) that I had SLE.  I was visiting the free clinic and so every single time I go I see a new one :( Its not working for me, because I need answers.  The last rheumy said to me "You are lucky its not worse, look, you dont even have swollen joints and no deformities, you have a really mild case"... which I thought showed a complete lack of understanding and a complete lack of interest in lupus... I was of the understanding that lupus arthritis didnt or rarely caused deformities.  Whats more none of them since I visited the first one have cared to hear about symptoms or my concerns... the first one was great but all the others just want to push me out asap. 
I forgot a couple of other problems I have... bruises, for no reason.  All over my body but mainly on my legs and arms.  I will be fine for a while.. a month or so without an unexplained bruise... then suddenly bruises will start popping up.  If I happen to have a cause for a bruise in that time, the bruise ends up bigger and darker than seems normal.  On my lower legs there is barely a spot without a bruise at the moment.  :(
The sun sets me off big time, I start to feel dizzy, then I get tummy pains and nausea, light headed and my skin feels tight.  I then feel weak.  If I stay too long the rash will appear fairly rapidly at times, other time it will take a day or two.
I am going to request copies of all the tests done so that I can see a private rheumy, so I have detailed care and see the same person each time.  The first lady was going to request kidney and liver ultrasounds... something which no one else has even nearly mentioned.  She also had a CT scan done to address why I may be veering to one side.
At the moment I am taking one plaquenil in the morning and two in the evening as the joint pain is worse overnight and in the morning. 
I dont know if my diagnosis is correct... I just know something isnt quite right... perhaps they have underestimated how bad it is, maybe they have missed something else and I have more than one autoimmune disease, maybe its something completely different.  Maybe I just need to be patient for the plaquenil to kick in?
I just know I cant really keep going on this way... I feel like Im loosing my mind :(
Thank you guys for replying :) all and any advice is so appreciated. 

New Member

Date Joined Nov 2007
Total Posts : 5
   Posted 11/5/2007 3:01 AM (GMT -6)   
Hey guys...
I've been writing all over the place, thought I should try to organise it a bit better LOL I am just so excited for answers.
Im coming up into another this time very serious flare... so Im getting stuck into the research so tomorrow I will go to my doctor armed with info.
These are my symptoms... the majority commencing during pregnancy or afterward;
- Headaches, feeling of sparks in my head
- Hairloss, everytime I am stressed or sick I lose lots of hair
- Fever usually combined or causes tummy pain or tummy upset.  Its brought on by quick temperature change, sun, sunburn or overheating or quick chilling from heating (walking from aircon to the hot sun or vice versa). Sometimes I get fever all by its lonesome.
- Joint pain.  Worse over night and in the morning and my hands for example get worse with typing.  I dont have joint specific swelling or deformity.
- Swelling or water retention.
- Short term memory loss.  But this isnt wondering where I left the keys kind of short term memory loss, its like a switch is flicked in my brain and suddenly I forget what I am saying, doing or where Im going. 
I have very little memory if any at all of what happened the previous day.  Sometimes when I am feeling my most clear, I will remember the previous days events.  When Im having a flare I will for no reason, replace letters.  Not mix letters up, but totally replace them with others without any knowledge or intention to, that is as I am talking.  When I get like this I will also suffer confusion and terrible fog.
- Unexplained bruises as mentioned.
- Stomach cramps, very painful and usually when I eat in the morning.  Weetbix especially sets it off.
- Anemia.  Im also allergic to ferrus metals which makes taking iron supplements impossible.
- Light headedness/dizziness and a kind of lack of co-ordination.  I will completely and unwittingly judge things to be in a different spot to where they actually are and completely innocently walk into them.
- Fatigue.
- Nausea.
- Facial rash, brought on by sun most commonly, or stress.
- twitching and weird nerve signals.  Mostly when I am tired or fatigued.  This gets really bad during a flare and combined with terrible joint pain makes sleeping nearly impossible.
- Low blood pressure.
- Weightloss for no obvious reason.
- dry eyes and mouth.
- Always high protien in my urine.
- Always extremely high CRP and high ESR (I dont know what this means, I just know for the last year all my CRP results have been classified in the extremely high danger range yet the doctors seemed blaze about it).
- ANA that is most commonly positive for what ever ANA makes you positive for but is sometimes negative for it as well.
- Positive for another one, anti-DNA I think.
- Negative for all others, or borderline so not of concern.
- I had one of the lab techs tell me once that I tested positive for APS but doctors have apparently ruled that out.
- Slightly low thyroid.
If anyone could make sense of this for me, give me some advice on what to ask my doctors about... that would help me enormously.

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 11/5/2007 10:17 AM (GMT -6)   
Ari, with all of your symptoms and labs, doctors really need to take notice. You meet so many of the diagnostic criteria for lupus that it should be jumping off the page at them. Of course, none of us can say that you have lupus since we aren't docs, but you sure have a lot of symptoms.

High protein in your urine should be taken seriously and can indicate kidney problems and you should be evaluated to see if you have lupus nephritis. I high CRP and Sed Rate mean that you have a lot of inflamation in your body - lots of us have high sed rated and/or elevated CRP. The positive anti-DNA is another big red flag for lupus.

You have a very good idea about getting all of your labs together to take to a private rheumy. Also, list our ALL of your symptoms, even ones that you think might seem like nothing or don't seem related - your rheumy needs to know every symptom you have.

Do you have any idea how long it will be before you can see a private rheumy? Some of what you are going through really needs some attention. Just don't stop looking until you find a doc who is going to help you.

Hang in there and take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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New Member

Date Joined Nov 2007
Total Posts : 5
   Posted 11/8/2007 1:38 AM (GMT -6)   
actually its going to take a long time to get the a rheumy cause they are all booked out til early next year :(
good thing i have a great gp though. 
the docs seem to pass off a lot of my symptoms and not worry about them.  i think cause i look healthy.
at the moment i just had surgery to remove my wisdom tooth... im in a lot of pain cause it was just under local :( and there were complications.  so i have a flare plus a painful mouth.  not cool.
thank you so much for the warm welcome and you have given me some good points to consider.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 11/8/2007 10:00 AM (GMT -6)   
Hey Ari . . .

I don't have much to add to the advice given above, but I wanted to welcome you to the forum. You'll get lots of support here and you'll likely make some good friends. I'm sorry you have to wait so long for help. . . so frustrating. Glad all is well with your little one . . . what a blessing!!!

There are some links in my signature that might be helpful to you.

I hope your mouth feels better soon.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 11/9/2007 11:50 PM (GMT -6)   
Hi Ari! I don't have much to add to the the advice you have already been given here but I am concerned about one thing you wrote. You said you take two plaquenil at night because of the swelling? Or did I misunderstand? The plaquenil will probably not do anything specifically for the swelling. You need prednisone or some other type of anti-inflammatory medication for this. You need to be careful with the plaquenil. The usual dose is one 200 mg in the AM and one 200 mg in the PM.

I have almost all of the same symptoms you describe, too. The bruising is really odd, isn't it? For me, the bruising comes and goes still to this day although I have been treated with medications for over two years now.

Good luck to you and keep the faith because they will be able to eventually help you manage. It takes awhile for all the meds to get into your system but it does work eventually!

Audrey Ann
Lupus and RA and LOTS of Medications!


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