lately, i have been getting woken up in the middle of the night because my feet are hurting sooooo bad. when i take a look at them, they are bright red and there are what look like sores starting on them. this goes into my achilles tendon too. does anyone else ever experience this? it seems like once i'm awake and wondering around they go away, but it is excrutiating@! i do have raynaud's with this and have been losing a little bit of nerve in my big toes. what's going on!
It is quite common for SLE patients to suffer with lesions and those lesions can appear on the face, the arms, the hands, the legs and the feet. However, what you describe sounds a bit like vasculitis (especially when you say it seems to improve when you move around).
Vasculitis is an inflammatory disease of the blood vessels, how they appear on the skin varies. The lesions may appear as red welts involving large areas of the body. These lesions can also present as small red lines in the cuticle nail fold or on the tips of the fingers or as red bumps on the legs and feet. In addition, these red bumps may ulcerate. At times, the blood vessels that are involved in this inflammatory process, may be deep in the skin and produce painful, red nodules. These are usually found on the legs and the feet.
There are quite a few skin diseases that occur in Lupus, so it might be a good idea for you to talk to your doctor about your feet to find out exactly which one you are suffering from. The treatments for the skin diseases vary, depending upon their symptoms.
Here are the most common treatments for vasculitis. However, Your specific treatment regimen will depend on your type of vasculitis and the severity of your case and your other Lupus symptoms:
Corticosteroids. Treatment for many types of vasculitis consists of doses of a corticosteroid drug such as prednisone or methylprednisolone (Medrol). You will probably start feeling better in just a few days, but you will need to continue taking the medication for an extended period of time. After the first month or so, your doctor may gradually begin to lower the dose (depending on your other Lupus symptoms) until you reach the lowest dose of corticosteroids you need to control inflammation and other symptoms. Some of your signs and symptoms may return during this tapering period.
Cytotoxic drugs. Some cases of vasculitis that are severe or that don't respond well to corticosteroids may need treatment with cytotoxic drugs, such as azathioprine (Imuran) and cyclophosphamide (Cytoxan). These drugs suppress the inflammation in your blood vessels. Mycophenolate mofetil (CellCept), another immunosuppressant used to prevent transplant rejection, has been used to treat vasculitis, though the Food and Drug Administration hasn't approved it for this purpose.
Nonsteroidal anti-inflammatory drugs (NSAIDs). NSAIDs, such as aspirin and ibuprofen (Advil, Motrin, others), can be effective in treating mild symptoms of some types of vasculitis, such as polymyalgia rheumatica or Kawasaki disease. But NSAIDs don't offer complete relief for many people, and long-term use can cause stomach and intestinal bleeding.
I hope that this has been helpful to you. Please let us know if you need any further information!!
Peace and Blessings
I've had problems with my feet for ten years. Burning and itching especially at night. A few months ago I developed sores on them and I could barely walk for two weeks. I was also diagnosed with vasculitis as Susie mentioned. What has helped me the most is soaking them in lukewarm water in either baking soda or corn starch. The corn starch seems to help the most.
There are lots of different types of sores associated with Lupus. I get something called Chilblains Lupus. Apparently it is kind of rare, but it really hurts. I went all over the country looking for a doctor who could identify my foot sores. I finally found a Rheumatologist who's wife has Lupus. I just had to start describing my sores and he knew exactly what they were. He said most doctors won't know what it is because most have never come across it. His wife is a dermatologist and she gets these sores too. She researched it until she figured out what they were. Chilblains Lupus isn't exactly vasculitis but still very painful and needs to be treated. There is a form of Chilblains that isn't associated with Lupus and is basically frost bite - but if you have autoimmune problems and haven't been subjected to extreme temperatures then it is probably associated with Lupus.
Here are some links to some pictures:
Thanks so much for the pictures. Some of these look like my hands and feet. It's been an ongoing problem for me. I've seen a dermatologist and a reumatologist and they put me on Methotrexate for a few months but I stopped taking it because it made me feel so bad. Can you tell me how you have treated it? The creams I have been percribed don't seem to help either.
wow, i really just figured that i was the only one, or that this was unrelated, but i'm starting to get the idea that everything that happens is somehow or another related. i am now going through my first real intense week of brain fog and it's maddening.
but anyway, thanks so much for the extra info. my feet predominantely hurt at night and it is burning, tingling, completely absent from any Raynaud's sensations. this is in the sole of my foot, it almost seems like it is the nerves in them. drives me nuts and keeps me up. i feel like i need to itch the insides of my feet!!!
no wonder dr.s can't cure these issues, they are all so random.
but again, i appreciate it all. i am seeing a new dr on monday so wish me luck that he may be remotely empathetic toward patients and can help me somehow.
one more question,
what do you do when everything that goes on around you seems abrasive and aggitating???
I have a problem with what is called peripheral neuropathy resulting from lupus. It affects my feet the worst, and causes intense burning and pain which is always worst at night. Even the pressure of a sheet or blanket bothers me when it is really bad. Peripheral neuropathy can occur in lupus, diabetes, and other medical conditions, so you might ask your doctor whether this could be part of the problem. The sores on your feet might not necessarily be what is causing the pain. People with lupus often have skin lesions - so you could have two distinct symptoms affecting your feet, Lupus can cause such a variety of symptoms, it's fairly common to have multiple things going on simultaneously. So the pain and the skin sores may be related but separate symptoms that need different treatments. Hopefully your doctor will be able to sort it out and get you some relief.
My Chilblains Lupus sores healed up with 20 mg of prednisone. Later on they put me on 100 mg of imuran and decreased the prednisone. I felt much better on imuran than prednisone - wasn't so emotional and depressed. I never felt sick on imuran - I think it is supposed to better than methotrexate about not making you feel sick. Hope your sores heal soon! They say cool rainy conditions make Chilblains Lupus sores worse.
I know it's been a while since we've talked about this, but I believe I do have Chilblains Lupus and I was wondering if Bama had any more advise on how to treat this. I have been having a lot of trouble with the rash on my hands and feet and I am trying to avoid any more meds, though I am willing to try the Imuran if it doesn't get better, but are there any topical creams you are using that help?
Sorry I haven't written back until now. I tried getting off Imuran and ended up not feeling well for awhile - it takes about 6 weeks to start working again. They gave me steroid creams for my hands and it helped some, but the oral prednisone worked much better. I also take procardia extended release (blood pressure medication) to help with the raynaud's. They also wanted me to avoid getting my hands and feet wet - apparently dampness makes it worse. I was supposed to limit washing my hands until the sores on my knuckles healed.