Doctor convinced it's Lupus

[SandyRN]

I went to my GP today and lucky for me I woke up with the classic butterfly rash across my nose and cheeks. Lucky because I wanted him to see this rash for a change instead of just me telling him about it. He said with everything that's going on he's pretty much willing to call it Lupus, but said it COULD be Rheumatoid Arthritis, but with the rash I think RA really has been ruled out. I am getting a consult to a rheumatologist, am now taking 10mg of Prednisone 4x a day then weaning down after 12 days. He hopes this will help the rashes and the pain in the joints, etc. I had all my bloodwork redrawn as well, and he confirmed that it is more likely to show Lupus when you're flaring, so hopefully this will give me the confirmation for real. I've said it over and over that I just want to be validated, and now that I am I'm REALLY afraid. I'm scared guys.

Oh, and because I've been having these terrible sores in my sinuses (he also thinks this is Lupus related) I'm going to have a CT of my head soon.

So...I came home with orders to see yet another doctor, a RX for prednisone (YUCK) and an appt for a CT.

I was ok but now that I'm home I really feel like I'm going to lose it. I bought some new bath stuff for a treat and I'm taking a hot bath soon to relax and lose myself in my book.

[Bessie]

Praying for you

[humpieumpumkin]

Oh no Sandy!

Im very sorry about this terrible news! I like you, wanted to be validated for my symptoms. Even though this means alot physically, at least you will get some peace emotionally. Like you I am also 'losing myself' in books right now. There is a post I submitted that lots or people gave some great book reccomendations. I hope you feel better, I hope the flare wont last. We are here for you Sandy!

Erika

[SandyRN]

Forgot to add the other clincher...I have Raynauds which is typical in Lupus patients. Today my hands were purple, and it was 60 degrees outside. They've never been this blue before, and they hurt more than normal too.

[SharonA]

Sandy...I am so sorry. Gosh, I wish there was something I could do for you. I hope your bath helps. I don't do baths but I am so cold today that one actually sounds good. To just be warm for awhile sounds good to me.

[traceann]

Sending you BIG squishy hugs!!

[SandyRN]

Tracey, just who are you calling squishy?

[Babs RN]

Sandy,
You know where I am if you need me.

Love,
Barb

[SandyRN]

Thanks everyone!

[ihurttoo]

Sandy,

I am so glad was willing to retest with you sick, and that he agrees it is more likely to show up when you are in an active flare. (Like I told you, I wasnt entirely sure he would agree to the retest, since so many Drs. think once it doesnt show up, that is it, you dont have it!)

I am also glad that you had an appt today while you have the Butterfly rash. Even though there shouldnt be a difference in telling a Dr. you have had them, and their seeing it, as we all know, there really is a difference. They are still scientists at heart and want to see it all for themselves.

I didnt realize you had the cold, red/purple hands/feet too. That is one of mine also, but like I was telling you, alot of the symptoms vary so much from person to person, that there are just too many variables and combinations to mention.

I am so happy that you will finally be able to get on the proper meds for your conditon. Though, I am sure you are probobly scared now. But, remember, you are actually healthier today than you were yesterday, because now you know what you are dealing with and can begin to fight it!

Hope the Rhem consult goes well, and you will start feeling better soon!

Hugs,
Amy

[SandyRN]

Thanks Amy. You should have seen my hands today. It was unreal, kind of like my body saying, "Hey Doc, LOOK at all these symptoms and take me seriously!" They were so blue, and underneath my fingernails were bright purple. He thinks most of my symptoms can be attributed to Lupus and that I may not even have all this other stuff like the fibro, etc. I'm not so sure about that, but the autoimmune factor in Lupus just makes SO much sense and really just ties everything in now. I took my prednisone dose, actually it is on a scale and I had to take 20mg now, 10mg 2 more times today, then 20mg at bedtime....and I feel loopy. Dont know why, but my little world is doing the spins. I already don't like being on this!

[aprilmae]

Sandy,

So sorry to hear about this but at least you are finally getting some answers. Sending you lots of prayers.

April

[Trishann]

Sandy, thank God you finally found out what was going on with you for so long. I know you have been fighting this horrible pain for a time now. I know you must have been relief to know something is going on but definitely understand your fears. Hopefully now you can get some control over it, and I hope the warm bath will help you to relax.

Trishann

[RAS6]

Sorry to hear the diagnosis, but I am glad you are getting answers Sandy. My very good friend has Lupus and was VERY ill by the time they figured out what was wrong with her. She was diagnosed when she was 17 and is doing much better now at 25. I will ask her about some resources for you. I'm sure Amy will help you as well! You are in my prayers!

[pingpong]

Sandy, I've had lupus for over 20 years, and it's a lot like IC: it's hard to diagnose, but once you know what you're dealing with you can do some things to help. I've never felt "loopy" from prednisone, just really hyper on a large dose. But I've gone from having a miserable lupus flare, in pain everywhere and barely able to drag myself out of bed, to feeling great in 36 hours thanks to prednisone! Again, just like IC, you have to figure out what you can do and how you need to treat it. Once I hit menopause, my symptoms got much better and I was able to drop one of my meds (imuran), because there was less estrogen in my system and that calms down the lupus. Of course, I've had to go without HRT, but other than some hot flashes I'm doing fine.