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karengervais
04-11-2008, 11:28 AM
Hi Everyone,

I have been reading the posts for a few weeks now and decided to post. About six months ago, I started bruising very badly for no apparent reason. Saw the doctor, she ran some tests, nothing showed up. Within the last two months, I have been suffering with painful joints, some days walking was even difficult, the first episode lasted a few days and it comes and goes now. I started breaking out in a rash on my neck and cheeks, I developed a huge patch on the top of my head which was red and scaly, sores in my nose and mouth. Thought it was my psorassis acting up so I really did not think much of it. My gp sent me to another doctor who specializes in internal medicine. He started asking me alot of questions and mentioned the possibility of lupus. I was sent for alot of bloodwork, nothing showed up out of the ordinary. I went to see him again yesterday and he said if my symptoms don't subside that he was going to put me on plaquenil my next visit. He said women sometimes have these things crop up without any explanation and plaquenil generally clears it up. ???? He has sent me for another round of bloodwork. I am a busy mom of 3 young children and I don't spend much time worrying about myself. After he questioned me, I realized that I had alot of other symptoms over the years that I had forgotten about. Lots of sores in my nose, exhaustion to the point I would cry because I did not know how I was going to look after my son and twin girls. Pain throughout my body for no apparent reason. The times I did see my gp they would say I was stressed, depressed and would up my anti-depressant.
I see from some of the reading I have done that people have symptoms of lupus but their bloodwork shows nothing, is this common?
Sorry for the long post, I was not sure where to start.

Thanks.
Karen

Oluwa
04-11-2008, 02:25 PM
Hi KarenG..

Welcome to our little place in CyperSapce that Saysusie had created for us in loving menory of her daughter Laurie. And starting here is a good place as any..cruise the forums, do a search...jump in, start another topic. All is welcomed, especially you.

Oh, I don't think Lupus just crops ups. Sounds like you have some type of autoimmune disease because you sound like me...Discoid Lupus? I have SLE

I had nose ulcers for years. Past them off as cold sore. Had a scrap, it wasn't a cold sore. Still wondering, still erupting and it wasn't until I started to dose with Prednisone then Plaquenil they took a hike..

I'd weaved through life for many years, exhaustion plaguing me. I remember a doctor wrote on my chart eats too little was the cause. Another time, chronic fatigue syndrome...another time, arthritis, and another hormones, menopause, depressed. Who wouldn't be with pain. Hives, something I ate or used on my body.. ER for costochrondritis, GERD..

My malar rash was the clincher. I said I think I have Lupus to my PP, tested positive for two years... now I popped negative...remission, maybe..I hope...

You can have Lupus and come up negative on an ANA test...

Read, get informed, knowledge is key to guide you through this. Great read is The Lupus Book by David Wallace...

Then bring a list of questions at your next appointment.
List of symptoms past and present...

And another thing, no apologies for your posts, for any reason. Long, short, sad, mad...happy. No apology ever needed. We all do it, vent, scream, laugh, cry..we understand so, take your sorry back. K?

Hugs,
Oluwa

Saysusie
04-11-2008, 02:57 PM
Ditto.... and welcome to our family!!

Peace and Blessings
Saysusie

Pearl
04-11-2008, 03:37 PM
Just wanted to welcome you and ditto the "no apologies required" command. When you spend some time reading the forum, you will find many who have searched or who are still searching for answers to questions about years of symptoms similar to yours. The quest for knowledge can be frustrating. Everyone here understands venting, for whatever reason.

You mentioned that your doctor has discussed putting you on Plaquenil to address some of your symptoms. Some rheumies prescribe this drug to address symptoms when they think the patient may be experiencing an autoimmune illness such as lupus. They may prescribe it before you are actually diagnosed. I was on it for a year before sufficient clinical criteria had presented to establish with certainty the diagnosis of lupus. I am glad my physician recommended it. For some people, the Plaquenil will provide significant relief over time. A positive response to the Plaquenil can in and of itself provide diagnostic information for your physician. It does not work overnight, however, and it does not work for everyone. I hope, if you decide to try it, that it provides you with some relief. It has certainly helped with my fatigue, with my joint pain, and with the mouth sores, etc. I feel almost human again, most days. :)

Best of luck to you. I am sure others will be along shortly to add their welcomes.

Jana

mnjodette
04-11-2008, 04:46 PM
Hello, Karen. I want to add my welcome to others. This place has been a refuge for me. When I was first told I probably had lupus, I was scared to death - I knew nothing; know no one with the disease; didn't know if I was going to live or die....my imagination ran wild! I found answers here, and support, and comfort. I know you will, too. Autoimmune diseases are tricky little beggars....and it might take a while for doctors to figure out what you're dealing with. In the meantime, plaquenil might make all the difference for you. Hope so. But as Jana said - give it time. It took about 4 months or more to work for me.

Hope you stop in often, Karen. You'll be welcome!

Jody

sits_inthe_corner
04-11-2008, 05:25 PM
hello and welcome karen

I've been doing alot of DOH and head smacking lately. Specially over the sores and rashes. I've felt so self concious about them that I never thought to push why I was getting them so often.

Well duh! I should have known better and I should have clued in a long time ago. My mother had lupus and my sister has it. So shame on me for not having a clue.

Cold sores, butterfly rash, shingles, egsima. Muscle fatigue, joint pain. Physically drained. Perhaps I didn't want to see it. But I do see it now.

This is a wonderful site. I cant say enough good things about it. The people here are the most beautiful people I've had the pleasure of meeting.

It goes beyond lupus ... it's just good people.

karengervais
04-12-2008, 12:49 PM
Thank you to all of you for your warm welcome and responses. :) I am going to spend sometime browsing the site and learning as much as I can. I am sure I will be asking lots more questions.

Until Then,
KarenG

p.s. no more sorries

sick n tired
04-12-2008, 11:52 PM
Hey KarenG,

Welcome to the forum.....

I have been having symptoms for at least 11 years...the only thing is during that time I was raising my small children...I do know how no matter what mommy's complaints are the family comes first.

I still find myself doing that...I think that is called motherhood :) I am glad that you have got a doc who seems to be taking these things seriously...perhaps you will get onto something to give you relief and then you will be able to raise your 3 precious ones easier :)

Take care,

Karen

sits_inthe_corner
04-13-2008, 01:31 AM
karen

I was re reading your post....and something you said about your doctor's comment about lots of women come up with this and plaquenil usually clears it right. Did I read that wrong?

It just seems a little off handed or matter of fact. Like oh well you have a cold here take this and it will go away.

It wont go away. It can be controlled, but it wont go away. Also if this is your family doctor he should also be refering you on to a specialist. I'm not sure where you are, but here in Canada my family doctor is unable to order certain tests that I may need. She must help me to develope a team of doctors. Rhuematologist, dermatologist.

I was just concerned that your doctor has an attitude of oh will no biggy. It's a biggy! But perhaps I read it wrong.

karengervais
04-13-2008, 06:42 AM
Hi,
You read right. My doctor did say women show symptoms like this and sometimes they clear up with plaquenil.
This doctor specializes in internal medicine, my gp referred me to him. I live in a relatively small town and I was having very bad bruising, after several tests she could not find the source of the bruising and sent me to the internist. I don't think he is not taking it seriously, but my bloodwork showed no signs and I guess he is reluctant to put a label on something that he can't backup with a test.
I am going for another round of bloodwork tomorrow so we will see. I will ask to be referred to a rheumatolgist when I see him in June if symptoms persist.
Something of interest I found out last night was my father's mother (not in my life for many many years) had extremely bad rheumatoid arthiritis. Not lupus but in the same family.
Since you are in Canada I may have more questions for you. I see you hail from Nova Scotia. My best friend is in Halifax, lovely area.

Take care.
Thanks

sits_inthe_corner
04-13-2008, 08:43 AM
:) I work in Halifax

My mother had a serious problem with bleeding and she was very easily burned. Running the hot water to do dishes could burn her badly. Her skin was so fragile. I guess her arteries and veins were too.

The plaquenil "may" manage your problems, and it can take from 6 weeks to four months to build up in your system enough for you to feel a difference. Every one is different with how they react to it.

I've been on it since December. Sadly it's not helping me. I have an appointment in May. I'm not sure what the next step for me is. Other than to say I'll be moving to a different rhuemy as this one is not working well with me and my family doctor.

It's not uncommon for folks to test negative. There are several things that come together to form the diagnoses of lupus. I've tested negative twice, possitive once and boarderline once.

I just didn't want you to have the impression that plaquenil is cure. It's a treatment. It wont cure you of lupus.

sick n tired
04-13-2008, 12:45 PM
Actually KarenG,

My Doctor said the same thing...He used the prednisone(7day) as part of his diagnostic test and then he also told me that if the pred worked then the plaquenil would make it much better....I never got the notion that plaquenil healed, just if one had lupus and they were able to tolerate the drug plaquenil then it would work and help with their symptoms.

Hoping that you are feeling great today,

Karen