Just diagnosed with lupus

[Mugweed]

As if the idea of being one inch away from having no job and having some iota of healthcare coverage no matter how shitty, I just got the results of my blood and biopsies today. Apparently I have lupus (discoid and systemic). Anyone else out there have this? How do you normally deal with it?

[DesertFlower]

1. OMG. i'm so sorry.

i've been suffering with chronic fatigue syndrome for 20 years. many of the symptoms are the same as lupus. check out this site. you can learn all about lupus and talk to others who have it.

http://www.butyoudontlooksick.com/boards/index.php

[juno jones]

2. Start research now.

Find the chat groups for lupus. Yahoo groups, etc. There are hundreds of people out there with information. Do not wait, you want to get the best treatment ASAP. The groups often have research, documentation and testimony as to various treatments and approaches.

I am going thru analogous yet different situation, aka: another auto-immune problem manifesting itself more benignly, but still evidently. Read up on this and have knowledge going in.

[pnwmom]

3. If you have any GI symptoms as well

irritable bowel, reflux, etc., you might want to have the blood tests for gluten intolerance. Celiac disease can be a risk factor for developing lupus and other auto-immune disease. A person who is sensitive to gluten can sometimes improve their auto-immune disease by eliminating gluten from the diet.

P.S. I'm very sorry about the diagnosis. Lupus is a scary illness, I know.

:hug:

[Mugweed]

4. Thanks

Thanks to each of you so far. I need all the info I can get. One minute you're OK and the next you ask someone to take a look at this and WHAM, you've moved into a new category.

[Tangerine LaBamba]

5. Find the best rheumatologist

in the area, and get an appointment.

I'm sorry, but you did say you had health insurance, right?

I've got an autoimmune disorder, and came close to dying until my rheumatologist stepped in and began treating me. What she has accomplished is nothing short of miraculous, as far as I'm concerned. My life will always be at risk, but the field has made enormous strides in the last twenty years, so we're both very lucky, you and I.

There are amazing drugs out there. You'll be fine.

Good luck to you.........................

[Mugweed]

6. Gracias

Yes, I have some insurance and will try to make the most of the coverage. I have a lot of research to do.

[dana_b]

7. my mother had it

she had a pretty bad case too. Rheumatoid arthritis, anorexia, sensitivity to sun, diverticulitis, and numerous other issues.

Get on disability. I know you say that you have no job but get on it. You need as little stress as possible (I know, so hard to avoid right now) and to rest when you need to. Eat what you can in small amounts. Save your energy for things that are important to you.

[phillysuse]

8. William Osler MD who was the first physician to describe

systemic lupus erythematosus in the early 1900's has a quote that I love - "The secret to a long life is to have a chronic disease and take care of it."
What this means for you is that you will need to get the extent of your lupus evaluated by a rheumatologist - for example, is there kidney involvement - you need to have a urinalysis to begin,
is the blood count normal or is there anemia or low platelet (clotting cells) counts?
Do you have an antibody associated with an increased risk of clotting - a so-called antiphospholipid antibody which is seen in about 50% of patients with lupus. There are a number of blood tests for this kind of lupus antibody - tests called activated PTT, lupus anticoagulant assay, anti cardiolipin antibody, dilute Russell viper venom time (DRVVT) and antibody to beta 2 glycoprotein.
Tests of serum proteins called C3 and C4 need to be taken as a baseline and when they are low, it often 9but not always) correlates with renal flares. Antibody to double stranded DNA is present in some patients with lupus also correlates with renal disease. Antibody to Ro (also called SSA) and La (also called SSB) can be seen in lupus patients who have secondary problems with dry eyes and dry moouth (secondary Sjogren's).
The gold standard of treatment for lupus is Plaquenil (hydroxychloroquine). These days we think this 45 year old drug is for life in lupus. Depending on what else you have going on, you might require other medications such as steroids like Prednisone or Medrol and immunnosuppressives such as Cellcept (mycophenolate mofetil) or Imuran (azathiprine) or methotrexate if you have primarily joint disease (RA type overlap).
Get yourself to a good rheumatologist and form a partnership with him/her. And read as much as you can about this disease so you can understand its protean manifestations.

[Mugweed]

9. Thanks to all

Thanks for all the information. I have a Dr. appointment today to learn more.

[Warpy]

10. Good news and bad news

The good news is that a diagnosis has been nailed down and now you can turn off all those tapes in your head that have been calling you lazy and a hypochondriac. The good news is that the disease can be controlled and lupies now have a normal lifespan instead of the average seven years between diagnosis and death we used to have. Lupus is like any other controllable chronic illness, more a pain in the ass than a major tragedy.

The bad news is that it will never go away and will always need medication to control it and some of those drugs are ugly. You'll need a rheumatologist to keep close watch on how you're doing for the rest of your life. The worst news is that once you lose insurance you won't get it back.

Once you're stable, though, that's not a huge deal. Docs have been great to me about down coding to reduce their fees. Lots of the medications are generic and cheap at Wally's, Target or Costco.

There are lupus postings at the Chronic Disease group and some of them have pretty good links, useful for understanding what the disease is and isn't.

[shireen]

13. i beg to differ

more a pain in the ass than a major tragedy.

Please don't minimize it that way. It is still a very serious condition. It affects different people in different ways. While your case may be a "pain in the ass," mine isn't.

Let the OP make up her own mind about her condition, after she's done the research.

[Fire_Medic_Dave]

11. Thoughts and prayers.

:hug:

[shireen]

12. yes.

and i'm still trying to deal with it. I hate it.

:hug:

Check out this NYT audio report on it:
http://www.nytimes.com/interactive/2009/07/08/health/healthguide/TE_LUPUS.html

[snagglepuss]

14. Sorry to hear that you are going through so much. My thoughts and prayers are with you.

Google can be your best friend. Get the facts and have questions written down to ask your doctor.

Check out ClinicalTials.gov at

http://clinicaltrials.gov/ct/search?term=lupus&submit=Search


And though this might sound odd but when you're up to it google and watch some of the videos of Jill Bolte Taylor or read My Stroke of Insight. She has profound insights about coping with life when life takes unexpected and unwelcome turns. This is someone who has walked the walk.

Hers is an incredible story. She was a Harvard neuro-scientist who had a massive, debilitating stroke. Her recovery took eight years. She lost all rational thought and for years lived with only her right brain. She writes how everyone can consciously influence the neural circuitry underlying what we think, how we feel, and how we react to life’s circumstances and there is a web site for people to share stories.

All the best to you and let us know who things go.

[cpompilo]

15. Here is some info for you:

Check out Low Dose Naltrexone for Lupus. The main website for LDN is www.LowDoseNaltrexone.org You can also google LDN + Lupus.
I am taking LDN for my auto-immune disease Crohn's and it is helping me tremendously. I recommend it.

[uppityperson]

16. "Naltrexone is a prescription drug, so your physician would have to give you a prescription after de

"Naltrexone is a prescription drug, so your physician would have to give you a prescription after deciding that LDN appears appropriate for you. "

from your link.