First of all, let me thank you guys for being on this forum and having it. I see a lot of posts and they've already helped clear up some questions i've had. This is an invaluable resource.
My fiance was notified last night by her doctor that she has lupus. I've tried to do a lot of digging since then and i still have tons of questions. I'll try not to ask them all at once as it would be overwhelming.
The major questions i have are as follows.
1) I read that the flare cycle varies from person to person, but vaguely how long are these cycles? Do they occur multiple times a day, on a weekly basis, monthly?
2) Are there any temporary "fixes" for flares that will help? Something that will help the burning sensation, such as drinking cold water, taking a cold shower, or something along those lines?
3) I'm trying to take my fiance to a Rheumatologist sometime early next week. Any idea how much they charge? She doesn't have insurance and now it'll be extremely tough for us to get it for her. How often are follow-ups done?
4) Any medicine that you guys would recommend? We're still trying to figure out what kind of lupus she has, and i'm sure the rheumatologist will be a great help in that respect as well as identifying the triggers etc but What do you guys use for the burning sensation? I've seen a lot of suggestions on the medicine board and was just wondering what most people would recommend so i have a better idea when we go to the rheumatologist.
Thank you for the time and replies in advance.
Wishing everyone the best!
-- Concerned one
Hello and welcome to our family. May I commend you for wanting to help your fiance and for taking the time to learn about Lupus in order to help her.
You are correct, relapse is as different as the individual with the disease. There is no way of knowing when one will occur, how long it will last or how often they will occur. A flare can be anywhere from several hours to several months, depending upon its cause and its severity!
Many of us with Lupus also suffer from Fibromyalgia. For me, the burning sensation is a result of the fibromyalgia. For instant relief, I often use cold, damp cloths on the area. However, only complete rest has ever given me results that last for several days. When I am fatigued and/or stressed, the burning sensation returns. So, I find that it is important for me to just STOP, lie down and let my body rest and/or find a way to eliminate my stress!
The general rules of thumb suggested by doctors to avoid flare-ups are as follows:
*Always take all medications as prescribed.
*Keep all doctor's appointments, even when she is feeling well.
*Keep a journal of symptoms, when they occur-how they feel etc.
*Avoid taking sulfa drugs (sulfonomides) that are used to treat infections such as bronchitis and urinary tract infections.
*Limit ALL exposure to sunlight; apply sunscreen before going outside during the day, and wear sun-protective clothing and a wide-brimmed hats. Also, avoid all ultra-violet light.
*Reduce risks of infections.
*Get plenty of rest.
*Do not smoke.
We cannot give you an idea of what a rheumatologist might charge. These vary so widely that it is almost impossible to predict. I am sorry that I cannot help you in this area.
The standard first line of treatment in Lupus is usually Plaquenil, Prednisone and NSAIDs.
Plaquenil - This is an anti-malarial drug. These drugs are particularly effective in treating skin and joint symptoms that may occur in Lupus. They have been demonstrated to improve:
muscle and joint pain
inflammation of the lining of the heart (pericarditis)
inflammation of the lining of the lung (pleuritis)
other symptoms of lupus such as fatigue and fever.
Prednisone - This is a is a synthetic hormone commonly referred to as a "cortisteroid." Prednisone acts as an immunosuppressant. The immune system protects against foreign bacteria and viruses. In some illnesses like Lupus, the immune system produces antibodies, which become overactive and cause undesirable effects. These illnesses are referred to as "autoimmune diseases". Prednisone suppresses the production of these antibodies. This suppression can make it slightly harder for you to fight off infection but also stabilizes the immune system if it is overactive with an autoimmune disease (such as Lupus).
NSAIDs - Pain and inflammation are common in people with systemic lupus erythematosus (SLE). anti-inflammatory and analgesic drugs are often used to help with the pain and inflammation, especially a group of drugs called the non-steroidal anti-inflammatory drugs (NSAIDs). There are many different types of NSAIDs, available either by prescription or over the counter. Traditional NSAIDs-ibuprofen (Motrin, Advil), naproxen (Naprosyn, Alleve), and piroxicam (Feldene), to name a few-inhibit both cox-1 and cox-2 prostaglandins. Many of the undesirable side effects of using these non-selective NSAIDs result from inhibiting the cox-1 "maintenance" prostaglandins.
The beneficial effects of the newer NSAIDs result from inhibiting, or limiting, only the cox-2 "inflammatory " prostaglandins. These specific NSAIDs are effective for treatment of musculoskeletal pain and are without many of the side effects associated with the traditional agents.
I hope that I've answered your questions. Please let us know if you need anything further. We are here to help you in any way that we can!
Peace and Blessings
Thank you Susie! That was a very thorough and helpful explaination. Not only did you answer all the questions i asked, but you went beyond that and cleared up further confusion that i had pertaining to this topic. I can't tell you how much I appreciate it :) I just have one questions about what you posted. What exactly is cox-1 and cox-2? I'll google for it as well and i'm sure that'll help.
My fiance hasn't felt much of the burning sensation today so far, thank God. She is, however, noticing swelling so i guess that means she most probably has the SLE type of Lupus. Are there any particular NSAIDs you would recommend? A doctor she spoke to recommended Relafen but i'm reading some things about it that aren't too positive. She has a cholestrol problem right now as well, which she's working on but it really doesn't seem to make Relafen a good choice for her from what i see.
Also an update if someone else is in the same boat as I am and wondering how much a Rheumatologist may charge, I called one here (and she's booked solid for the next 3 months but) she charges 300$ for a first time visitor. If you don't have insurance though, she offers a 40% discount, so it ends up being 180$ roughly. She also said that the main expense will be the tests that need to be done depending on what the symptoms are like, and the X-Rays here run between 300-400$ while the lab tests run between 400 and 1,100$.
Once again Susie, thank you so much for your help!
-- Concerned one
Hi Concerned One;
You Are Most Welcome :-)
I waited to respond to see if you found your answer regarding Cox1 and Cox2. If not, here is brief explanation:
Cyclooxygenase (COX) is an enzyme that is responsible for the formation of important biological mediators called prostanoids (including prostaglandins, prostacyclin and thromboxane). Pharmacological (medication) inhibition of COX can provide relief from the symptoms of inflammation and pain; this is the method of action of well-known drugs such as aspirin and ibuprofen (NSAIDs).
Again...perhaps someone can help you with your question about how much a rheumatologist charges. As I said, there is no standard fee and each lab may have a different fee schedule for their lab work and x-rays. You might do well to do a price comparison amongst the rheumatologists in your area and with the labs that they work with.
Peace and Blessings
Thanks Saysusie :) That was very helpful. I had found a few things about COX but it was still a little confusing. Your post cleared up a lot of confusion, once again. Thanks! I'll definitely be comparing Rheumatologist fees but currently I'm in the process of trying to get my fiance some insurance. If i'm successful in that, the fee wouldn't matter much :) Here's hoping for the best :P