new diag. lupus

watoozie

I was diagnosed about a year and a half ago. I too am on Plaquenil 200mg twice a day. Just be sure to eat with it. I also take an anti-inflamatory, Feldene. It took about 4 months for the Plaquenil to kick in, but I sure couldn't get along without it now. I still have flares, but they aren't near as bad. I too knew something was wrong for several years before but the doctors just thought I was a complaining woman, I guess. My feet are usually cold, so I have the opposite problem. Even with shoes and socks, they are cold. I hope someone else can give you some advice and maybe give you some relief. Take care and hope you get to feeling better.

jjcali

Hi. I am new (today) to the board. Sorry to hear of your diagnosis. I was diagnosed almost three years ago; been on 400mg of Plaquenil ever since. I can't emphasize enough the importance of taking those pills with food. Your stomach will thank you. It took about 9 months for the Plaquenil to start working for me and for the stomach aches to go away (slow learner, took with milk).

As for the hot feet, most lupies would welcome warm feet. I have Raynaud's and mine are blocks of ice. Or were blocks of ice, but oddly stopped when I started taking Cymbalta anti-depressent. This may sound dumb but are you sure they are hot, or do they feel like pins and needles? That can be a whole different lupus thing with circulation.

Good luck and don't forget to see a knowledgable eye doctor for Plaquenil checks every six months-ish.

JJ

VeeJ

Hi, Lisa Jane. I'm sorry about your Dx but glad you now know what needs done (the meds, etc.) My feet used to hurt & swell, too, plus summer & city sidewalks don't mix well.

Make sure your shoes fit well. Many people stick with the size they've always worn, even as manufacturer's shoe lasts have changed (like that generic "B" width you find everywhere). Standard advice is to shop for new shoes at the end of the day.

There are a few brands still made in a various widths. American Munro specializes in comfort & walkability; many of them are kind of cute, too. I think Naturalizers, too.

If you still have trouble getting a good fit, you could try the internet stores, where in many the software design supports shopping by size and width. If the e-store has a good return policy (check before ordering), the worst that can happen is you get stuck absorbing the mailing charges to do a return.

Cotton socks tend to breathe better than synthetics or blends.

Good luck! I hope you can make your feet happier soon. Bye for now, Vee

jjcali

Following up, I just got this info from the ***.*** website, which has tons of lupus info on it (also, Zappos for shoes is doing free shipping there and back for returns and has wide sizes):

Anyway, regarding the burning sensation, it appears to be related to the same nerve and/or circulation issues that cause pins and needles:

Peripheral Nerve Problems

About 20% of people with lupus have peripheral nerve abnormalities that show up on certain tests - electromyograms (EMGs) and nerve conduction studies. These are electrical tests of the nerves and muscles. But only about 10% of people with lupus actually have symptoms - called polyneuropathy or peripheral neuropathy. In most people, this is not a major problem. Sometimes it may cause weakness of the hands or legs. Or it may be a sensory neuropathy - abnormal feelings - causing numbness, tingling, or burning of the hands and feet. No one really knows what causes this painful neuropathy. It is treated with painkilling drugs such as gabapentin (Neurontin), amitryptyline (Elavil) or nortryptyline (Pamelor).

Usually, neuropathy is symmetrical - affecting the same part on both sides of the body. But 3% of people with lupus have non-symmetrical neuropathy. It's patchy - a little bit here, a little bit somewhere else - and called mononeuritis multiplex. That's the type that may be caused by vasculitis. It may be a sign of active, inflammatory lupus and need aggressive treatment with steroids and other immunosuppressant drugs.

Kristin67

I find that wearing Uggs is the only way to go when my feet are acting up. My husband surprised me with some that had special ordered with double sheepskin--they are awesome! I usually have ice cold feet, and they certainly help with that... but sometimes when they swell up and I can't wear real shoes, they are a Godsend. Once I had gout (an old man's disease? I think not! haha) and after the few days of excruciating pain, (where I couldn't wear even a sock), I lived in my Uggs for what seems like forever. Lucky that now they're in style... Hey look, I'm trendy!

*you can get them much cheaper online than in the stores, btw... but they aren't cheap... don't get the knock-offs, they just don't measure up in comfort.
Good luck,
Kristin

BarbaraH

Hi -

There is life with lupus, but feet that feel good is a great 1st step! My feet have lived in Birkenstock Arizona sandals almost since I was diagnosed with lupus 7 years ago. At that time, my feet were swollen and painful, too, and I was dealing a flare and with an allergic reaction to Celebrex (it has a sulfonamide in its chemical makeup and lots of lupus folks become allergic to sulfa). Even without the allergic reaction and swelling, my feet love Birkenstocks.

Hope you find some comfy shoes! Barbara

lisa_jane

Thanks to everyone for responding. Your advice is appreciated! I don't believe it is a nerve pain as I have had the tingling legs and foot pain with a herniated lumbar disc in the past. The pain I feel is in any movable area of the foot, the joints and small bones. The great toes are worse. The hot sensation really feels like a hot summer day when you have too much foot covering on, I can't really say that is the painful part of this problem. Maybe it is just do to the flair I am in. I am writing down my symptoms in a log so that I will be able to see any pattern in the future. I usually wear thick soled Keds at work but have changed to the Crocks since they give more air flow.
You all seem so positive, it really gives me hope.
Thanks again,
Lisa Jane