[emu]

Hello to all,

I have been reading the forum and decided to join in. I was diagnosed five or six years ago with DLE and SLE. My rheumy has dropped the SLE label over the years and says now that I just have DLE. I suppose because my ANA never turned up positive. We never had a discussion about it.


I do have APS with consistently elevated levels of IgM, Fibro, Osteoarthritis, and a number of problems with my spine. I have an osteophyte pressing on my spinal cord at the cervical level (stenosis), a hemangioma at the thoracic level and several bulges in the lumbar causing foramenal stenosis at those levels. A few other minor problems like Raynaud's, hyperthyroidism, scoliosis, and asthma.


Pain is my main problem and trouble just getting around doing daily tasks. I take plaquenil and pain meds, and a few others. Several times a year my doc gives me a burst of prednisone to quiet down one thing or another.

Well that's a start. I am looking forward to meeting you. There have been many threads I wanted to participate in but couldn't find the nerve.

Thanks!

 

[cath]

Hi Emu,

Welcome to the forum. I love your avatar!!!

I hope you enjoy it here

X C X

 

[Joandublin]

Hi Emu

Welcome to the Forum! Just jump in anywhere you like We wont bite :hehe:

Looking forward to seeing more of you

Luv n stuff
Joan:rose:

 

[Clare.T]

Welcome to the forum emu !

Maybe your doctor would consider adding Quinacrine to your Plaquenil. This is another antimalarial that works well with Plaquenil and is very effective for skin, energy and joint pains as well as general disease modification. It is possible to have some lupus symptoms in addition to skin even without a positive ANA although many doctors don't realise this.

And of course the antiphospholipid antibodies can be a criterion for a SLE diagnosis not that it matters so long as you are being treated effectively.

I'm sorry about all your other problems. It might be hard to know what pains are from lupus and what is from those. I hope you'll find the forum very helpful.

Bye for now
Clare

 

[LolaLola]

Hello, Emu,
Constant pain is a lot to deal with. Welcome here.
x Lola

 

[onetay]

Hi Emu,

Sounds like you will fit right in and about the posting don't be affraid jump right in with both feet!!!! Would love to see you in the chat sometime. Well Welcome is in order and I am Tammy (onetay) in case we see each other in the chat.

Tammy

 

[macfamily53]

Welcome Emu

I sure hope you find the sight to be as helpfull as i have over the years.I know what you mean about afraid to respond to post we all went through that when we first joined here.Just jump in and post nobody cares how something is posted to them we are all glad to have someone there for us to relate to and the wonderful support from everyone in here especially the moderators that are here 24 7 basically.I know what you mean about the pain.I have been doing a lot better lately but the fatigue is getting worse again:sad:.Well i just hope the support from everyone in here helps you to deal with this disease a little better((((hugs)))).I am sorry you are in so much pain though.I cant wait to hear from you.

Tammy

 

[emu]

Thank you all so much for the welcome.

I have a question about the chat room. There are 2 options to pick from:

1) chat room
2) chat room (float)

Which selection should I choose to get into the chat room. What does Float mean?

Thanks!

 

[KarolH]

Hi and welcome.

Good question, not sure. I am always in the chat room but I just click on enter chat and it takes me into the party.

We have a lot of fun in chat..........well at least I do.:wink2:

 

[Clare.T]

Hello emu:

If you click on chat room "float" the chat appears in a small window on the main forum window. You can move from forum to chat quite easily by clicking on the main window. The float will then disappear and appear as a mention at the bottom of your screen and you click on that to get the chat window up again.


Clare