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New to the lupus diagnosis...Help! The symptoms seem so varied!

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Old 04-15-2008, 05:48 PM   #1
Join Date: Apr 2008
Location: Boiling Springs, SC US of America
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Carole12141960 HB User
Thumbs down New to the lupus diagnosis...Help! The symptoms seem so varied!

I've been seeing a Rheumatologist since last summer and recently had a "lupus" diagnosis with a positive ANA as well as by evaluating other ongoing symptoms:

joint pain
malar rash and other body rashes biopsied (positive)
ongoing temp of 100+
easy bruising
hair loss (hair stylist noticed it before I did)
incredible fatigue
mouth ulcers

This week; however, adds a new one... I've been dealing with tremendous pain in my hands and feet in addition to the major joints of hip, knees and lower back (bone density screening shows an abnormal bone density of -4 in the spine only). My hands "don't work right" is the only way to describe it. I have a hard time picking things up, and my feet tingle. The day before yesterday my ring finger turned bluish purple like it was bruised; the next day it was gone. Just a person shaking my hand in greeting brings me to my knees! This is something I've not experienced before, so I've made an appointment for tomorrow. Thing is, I'm hoping to receive some experience/suggestions for dealing with the pain...

The doctor has increased my Plaquenil dosage; and has changed me from Meloxicam to another anti-inflammatory. But at this point is feels like nothing seems to be helping! Am I correct in assuming that this is a "flare" as it had seemed somewhat managed up until this past month.

I have four children: ages 2, 20, 24, and 27. That's not a typo, and I get frustrated not being able to pick up my little daughter.

Sorry this is so long, but thank you, and I'm grateful to have found this forum and vast experience!


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Old 04-16-2008, 08:07 AM   #2
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Location: Houston
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Donte HB User
Re: New to the lupus diagnosis...Help! The symptoms seem so varied!

Hi Carole,

I just wanted to say I'm so sorry you are feeling so terrible. I can relate to your pain. I have a hard time picking things up as well (namely my two year old daughter). You may be in a flare right now. Try to hang in there until it passes. Good thing your doc raised your plaquenil dose; hopefully that will work soon. What about Prednisone? Do you take that at all for a short period of time? It helps me usually. I'll take it for about 5 days and then I'm good.

I think it's funny that you wrote "that's not a typo" - I too have started all over again with the babies! I have a 2, 16, 20 and 21 year old(s). I don't know how we do it. It's not easy having this disease and having a young child.

Hang in there

Old 04-18-2008, 07:58 PM   #3
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Location: Virginia, USA
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BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Re: New to the lupus diagnosis...Help! The symptoms seem so varied!

Hi -

Any chance you're taking Celebrex? Your worsening symptoms - especially the pain in your feet, knees, and hips sounds like my reaction to Celebrex. I didn't know I had lupus at the time, but had foot pain so the doctor put me on Celebrex. I took it for two weeks during which I started having such pain and swelling in my lower joints that I could stand for only about 20 minutes at a time before I had to sit and elevate my legs. I missed 3 weeks of work, too.

The 3rd doctor I saw did an ANA which was + and a sed rate which was double normal. He sent me to a rheumie. The rheumie deduced that my bizarre symptoms were an allergic reaction to Celebrex, took me off Celebrex, and put me on Naprosyn. The joint swelling and pain were gone in 3 days. I'd never been allergic to anything before, but the rheumie told me many people with lupus become allergic to sulfa - and Celebrex has a sulfonamide in its chemical make-up.

Long story short, if you're on Celebrex, that could be the culprit.

In case you haven't heard this, the sunshine will probably make your lupus symptoms worse. Try staying out of the sun from 10am to 4pm, wear 45+ SPF sunscreen, long sleeves, slacks, and a wide brim hat and see if you don't feel better. Your lupus rash may also fade away. Works for me!

Wishing you well - Barbara

Old 04-20-2008, 04:11 PM   #4
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Re: New to the lupus diagnosis...Help! The symptoms seem so varied!

Carole, Welcome. I'm sorry about your Dx but glad you found us here. I'm not sure how recently you started Plaquenil. It takes about 3-4 months to reach full effect (so the hardcovers say). Maybe you're still in that time frame?

Also, spring & summer are often rough seasons for those with lupus.

I get the foot thing, too, where it feels as though you're standing on knife blades. For me, it definitely correlates with overdoing it & being on my feet too long, when I'm already tired. (I should know better, but clearly don't.) Other than trying to cut back a bit---very hard with your precious two-year old daughter!---you could make sure to wear your most supportive & cushioned shoes. At the first sign of trouble, I don my "house tenners"---ugly but kind to the feet.

I wish I had more to suggest. I hope you regain some energy soon. Hang in there! Best wishes, from Vee

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