[LaLaRose3]

I know that we have some girls somewhere with experience in these two conditions... I had blood work done that shows signs pointing to both conditions. I will not have a definite diagnosis for at least another month, so I was hoping for some info or advice on these, specifically lupus. My doctor said that she thinks it is Lupus more so than RA.

Thoughts or advice, anyone? I want to know what type of medicines I will be on and how treatment will go if I do get dx'ed at my next appointment.

[KCMomma]

I don't have much advice, but just wanted to offer my support. My grandma had lupus and took meds to regulate it I think.

[LaLaRose3]

Thanks hon. I have never been in this much pain before- all of my joints feel swollen and inflamed, even my ankles and knees. It feels like I cannot walk or lift.

[KCMomma]

OMG lauren, I'm so sorry you are in so much pain. I sure hope you get some answers soon and feel better!

[LaLaRose3]

Ah thank you so much for the support. It means a lot. I wish I had my camera here so I could take a pic of my hand- the knuckles are HUGE and red.

[lttle_one]

I don't have any advice, just good thoughts. My good friend's mother has lupus. When it flares up, I believe she takes Prednisone (steroids.) My cousin has RA and does some homeopathic stuff, but I can't remember what.

[BabyBird]

I don't have any info on either of those but hopefully either way you can get some pain relief.

[~Andrea~]

I'm sorry. I don't have any helpful information for you. I hope you get something figured out so you can start to feel better soon!

[Jessy133]

I also dont know anyone with those, I just wanted to say your in my thoughts and I hope you feel better soon!

xoxox

[Lauren S]

Lauren- the baby is crabby right now so I'm one handed typing, but I promise to reply to you tomorrow. I have had lupus for almost 10 years now.

[courtneytcu98]

Originally Posted by LaLaRose3

Ah thank you so much for the support. It means a lot. I wish I had my camera here so I could take a pic of my hand- the knuckles are HUGE and red.

One of my best friends has RA and that sounds exactly like her initial flare up. . . she couldn't open her hands at all and felt like she had a severe case of the flu. She couldn't go up the two steps from her living room to her kitchen . It was quite terrible to see her suffer that way. Now she takes Remicaid by infusion every 8 weeks and no one would ever guess she has RA.

I hope you can get some relief VERY soon. I know Lauren will have lots of info for you.

[LaLaRose3]

Thank you all for your support and advice. I don't know what I would do without JM, seriously. I have a really good pain tolerance, but this pain is just overwhelming. My stepmother took the baby for one night tonight so that I can have some rest. I know that sounds bad but it even hurts to change a diaper. I feel like a bad mommy, TBH.

Lauren, I am so glad you are going to respond. I was hoping you would see this!

Courtney, thank you honey. I just HAVE to say that Elliot is WAYYY cute!!

[Celry]

I hope your symptoms clear up soon. I'm so sorry you're going through this.

If it is RA, there are a lot of doctors who suspect that may be caused in some people by food allergies, mainly a gluten allergy. If it ends up being RA, you may want to try cutting out wheat and other products with gluten for a while and see if that helps your symptoms at all.

[lttle_one]

You're not a bad mom! Quite the opposite. You're a good mom for getting help so you can take care of yourself. {{HUG}}

[Lauren S]

Originally Posted by LaLaRose3

I was hoping for some info or advice on these, specifically lupus. My doctor said that she thinks it is Lupus more so than RA.

Thoughts or advice, anyone? I want to know what type of medicines I will be on and how treatment will go if I do get dx'ed at my next appointment.

Sorry I couldn't respond last night. I thought of you all night and the things I wanted to tell you. I got my first symptoms of lupus in late 1999. Mine started with horrible joint pain too. Mine was in my toes. My big toes were so swollen and sore that I could hardly walk.

They started doing tests on me, and it actually took a whole year to be diagnosed officially. Doctors used to go by a list of 11 criteria in order to diagnose. You had to have 4 of the things in order to get a diagnosis. I heard they changed this a little recently and made it more general. Anyway, here's the list of 11. See if you have any of these.

The “Eleven Criteria”

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. A special note on the ANA test


One of the biggest things they look for is the positive ANA. Since you said you had blood work done, it sounds like maybe that was positive for you. The weird thing about these symptoms is that even if you have some of them, it might not be lupus. You have to have a bunch of them in order for them to decide it's lupus.

In case other people don't know, here's basically what lupus is. It's an autoimmune disease. Everybody has antibodies that help them fight infections. With lupus, your antibodies get "confused" and attack your healthy tissues. They can't tell the difference between the good and the bad.

As far as medications, I take daily an anti-inflammatory (for the joint pain) and Plaquenil which is an anti-malarial. They aren't sure why a medication made to treat malaria works on lupus patients, but it does. I used to take the Plaquenil twice a day, but now I'm down to once. You might also have to take rounds of steroids if things get bad.

It's a disease that comes and goes. They call them flares and remissions. When I got pregnant, I was doing pretty well with mine. Halfway through the pregnancy, my doctor said I'm currently in remission! I'll take it while I can because being in a flare is ROUGH.

That being said, if it does turn out that you have it, you need to accept help from others. I remember at some of my bad points being so utterly exhausted down to the bone that it was an effort just to lift up my arm to take a drink. I think the sheer exhaustion and the joint pain are the worst.

Also, if you do have it, you have to avoid the sun. I'm sure you've noticed before how pale I am. That's because I never, ever go in the sun. Photosensitivity is a big symptom. When you go out in the sun, you can get a bad rash on your face and feel totally sick. It's something that's easy to adjust to though. You just learn to seek out shade and wear a hat when you can't.

Sorry this was sooooo long! If I think of anything else, I'll come back and add it. Please know that I'm thinking of you. I know how crappy you must feel right now. The good news is that once your doctors can figure out what exactly is wrong, there will be a way to treat the symptoms no matter if it's lupus or RA or something else. The medical field is amazing and has come far in recent years. There continues to be studies and research done all the time, and hopefully some day soon they will fine out what causes diseases like this and a cure will be not far behind!

Lots and lots of . PM me anytime if you have questions or just need to vent. I've been there!

[Brenda04]

I don't have any advice but I want you to know you are in my T&P's

[LaLaRose3]

Lauren thank you so much for all of that. I was told to "not google" because you can find some scary things, so I didn't know a lot of that. I have a lot of those eleven "signs", especially the joint pain and sensitivity to sun. If I stay out for more than five minutes, my entire face gets red and splotchy, especially over the bridge of my nose and cheeks. It takes sometimes days to go away, and I am always asked if I am sick. And with the tiredness/fatigue, I almost thought I was PG again, just because of how utterly EXHAUSTED I am. I feel like I can't get out of bed sometimes. I am too tired to cook, too tired to even shower. I have to take baths right now, because standing that long just is too hard. I think the worse thing right now is this joint pain... I told DH that even my TOES hurt last night.
My doc put me on an anti-inflammatory at my last appointment, I think its Naprosyn (sp?), but I really don't like it too much. It upsets my stomach. At the appointment before that she put me on some sort of arthritis meds, but they hurt more than helped. I am hoping something helps eventually.
I did have a "positive abnormal" ANA, as well as elevated levels of all kinds of other things I cannot remember. It also showed that I had some sort of infection in my body, but that my body wasn't trying to fight it off. They put me on some heavy-dose antibiotics for two weeks, and then two weeks after that I will have more bloodwork.

It really means a lot for you to take the time to share your experiences with me. I will need a support partner, LOL, and I choose you! Really, thank you.

[samspain]

Oh Lauren, I hope that things get diagnosed quickly and that the new meds make you feel better again. It must be heartbreaking to not even be able to change little Alice. She is so cute in your siggy!!. I´ll be thinking of you and whilst you have people to watch alice for a while, take advantage and rest.

[NortheastWifey]

I don't have any advice, but I just wanted to say that I'm thinking of you and I hope your doctors will be able to help you soon. I can't believe you have to wait a month! Hang in there. I wish we all lived closer so we could help you out!