I got this list from the lfa webite. It is important to note that this is the tool doctors use to decide if lupus may be the answer. Please read and learn. Thanks! j
Common Symptoms of Lupus
To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
- Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
- Discoid rash – a rash that appears as red, raised, disk-shaped patches
- Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
- Oral ulcers – sores appearing in the mouth
- Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
- Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
- Kidney disorder – persistent protein or cellular casts in the urine
- Neurological disorder – seizures or psychosis
- Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
- Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
- Abnormal antinuclear antibody (ANA)
People with lupus also may experience symptoms that do not appear among the ACR criteria:
- fever (over 100° F)
- extreme fatigue
- hair loss
- fingers turning white and/or blue when cold (Raynaud’s phenomenon)
As I write this post, in Ohio we have had 80 degree temps and 29 degree temps all in a few days stretch. Hmmm, wonder if that could explain a few things. I have been having some of the worst joint pain in awhile. Amazingly, it could be from the weather. I know, they say scientific studies show no correlation of joint issues and the weather but I challenge these scientists to walk a week in my shoes. They might have different conclusions if they did.
Many of my fellow lupies feel the same way. The weather changes, we hurt. Fact. So, I have been having another rough patch, or it could just be a continuation of the winters rough patch, I am not sure anymore. I only know that this winter has been far worse than the temperatures we had. The constant yo yo effect has wreaked havoc in my body. Outwardly I look fine, if a bit tired. Inside, my body is at war with itself and the resulting consequence is pain for me. Hey, I am allowed to be a bit negative. I can scream and rage at lupus until I feel better if I want to.
So, in the interest of honesty, I will say that this winter has been a bear and I have felt every change from cold fronts to warm fronts. I am soldiering on though, because I want to see my grands grow up and become the wonderful adults they are capable of being. That is only one reason but for now, this moment, that is my reason.
Hope you all are enjoying pain free days and well rested nights!
- Weather And Joint Pain Closely Linked (annem040359.wordpress.com)
I have found a way to feel better, or at least a little better than normal these days. My normal for the past few months has been a flare with no end in sight. Painful and depressing. For the last few days though, I decided to try a new trick against the wolf. What is it?
Each and every day for the last few days I have made myself lay down for an hour or so and take a nap. Yup, a nap. Guess what happened? Well, I have always felt at my best right after waking, before the pain gets going full tilt. By taking a midday nap, it makes my body feel as it does in the mornings, and I get decently lower pain. Will this keep up? I do not know. For now though, I will take the naps and see if wolfie will lay off of me for a bit.
I wanted to share this because it might help someone else out there too. I figure, like most of us with lupus, that it is worth a shot to try it. Believe me, we try all kinds of things in an attempt to get this disease under control. This is an easy one to try though. Happy napping!
I have noticed in my own experience and others, that when we are diagnosed with one autoimmune disease, sometimes we develop more that will overlap with our original diagnosis. For instance, I have SLE or lupus, and overlapping that I have fibromyalgia, IBS, corneal erosion, raynauds and a host of other autoimmune diseases. I found this information on the website, www.lupus.org from the Lupus Foundation of America. It makes an interesting read…
Lupus and Overlap
Connective Tissue Disease And Overlap Syndromes
The connective tissue diseases are a family of closely related disorders. They include: rheumatoid arthritis (RA), systemic lupus erythematosus (SLE or lupus), polymyositis-dermatomyositis (PM-DM), systemic sclerosis (SSc or scleroderma), Sjogren’s syndrome (SS) and various forms of vasculitis.
These diseases have a number of common features:
- They affect women much more frequently than men.
- They are “multisystem” diseases, capable of affecting the function of many organs.
- They “overlap” with one another, sharing certain clinical symptoms, signs, and laboratory abnormalities.
- Blood vessels are the most common target of injury in all of these diseases.
- The immune system is abnormal and accounts, at least in part, for the observed tissue damage.
Although lupus most often occurs alone, many people with lupus also have symptoms characteristic of one or more of the other connective tissue diseases. In this circumstance, a physician may use the term “overlap” to describe the illness. There are several well-recognized overlaps that may affect people with lupus.
Lupus and Rheumatoid Arthritis
In lupus, joint pain (arthralgia) is common. Joint swelling (arthritis) may be present in some cases, but the majority of those with lupus experience joint pain without swelling or only intermittent swelling. In rheumatoid arthritis (RA), joint swelling is always present and pain is common but less prominent. Because rheumatoid arthritis is more likely than lupus to cause joint deformities and bone destruction, joint replacement or reconstructive surgery is more often required in RA than in SLE. If a person with lupus develops severe arthritis with joint deformities, he/she should be considered to have rheumatoid-like arthritis. In some instances, the physician might have reason to believe that both diseases — SLE and RA — have occurred in the same person. When arthritis develops in the course of lupus, treatment with non-steroidal anti-inflammatory drugs (NSAIDs), low doses of cortisone, and the antimalarial drug hydroxychloroquine (Plaquenil) are usually helpful. People with lupus who have typical rheumatoid arthritis are prescribed the standard forms of RA treatment. These include methotrexate, sulfasalazine and in some cases, more potent drugs to suppress joint inflammation.
Many persons with lupus have muscle pain (myalgia), but a few have muscle weakness due to inflammation (myositis). The “muscle weakness” that people with lupus report is most commonly due to fatigue or high doses of cortisone. In polymyositis-dermatomyositis, the primary problem is muscle weakness due to muscle inflammation. In myositis, weakness especially affects the hips (inability to rise from a chair or toilet seat, or to climb stairs unassisted) and shoulders (inability to lift a weight onto a high shelf or comb one’s hair). Typically, there is little or no pain associated with the weakness. People with myositis have increased blood levels of creatine kinase (CK, a substance that leaks from injured muscle), abnormal electrical activity of muscles (seen in an electromyogram, or EMG), and muscle cell degeneration and inflammation that is found in a muscle biopsy. Prednisone or other cortisone-like drugs are most often recommended for the treatment of myositis, and may be used in combination with other immune-suppressing drugs. Cortisone itself, in high doses, may actually cause muscle weakness of the hips and shoulders, very similar to what occurs in myositis. But in this condition, called “steroid myopathy,” the CK, EMG, and the muscle biopsy do not suggest inflammation, and recovery of strength promptly follows reduction of the cortisone dose.
Lupus and Scleroderma
The hallmark of scleroderma (SSc) is thickened skin (sclero=hard, derma=skin) which affects the fingers, and often the hands, forearms, feet, and face. If skin thickening is widespread, it may extend to the upper arms, thighs, chest, and abdomen. These changes are due to the excessive production and uncontrolled laydown of collagen, the substance normally present in scar tissue. The variety of skin rashes seen in lupus are due to inflammation, rather than fibrosis. These include the facial “butterfly” rash and photosensitivity reaction (rash, hives or blisters immediately after exposure to sunlight or other sources of ultraviolet light). The latter is limited to the skin surfaces exposed. An exception is discoid lupus, which consists of spots or patches of rash, mostly in sun exposed areas (face, ears, extremities), which typically cause scarring and skin pigment changes. The appearance of scleroderma and discoid lupus are entirely different, and should be easily distinguished from one another by your physician.
Other features less common in SLE than in SSc include: scarring of the lower portions of the lung (pulmonary fibrosis); difficulty in swallowing solid foods such as bread or meat; and heartburn or indigestion from stomach acid “refluxing” (coming back up) into the esophagus. Difficulty swallowing and reflux are due to sluggish and uncoordinated motion of the muscle layer of the esophagus (esophageal dysmotility). Scleroderma often leads to finger and hand deformities as well, due to the combination of skin thickening, arthritis, tendinitis and tenosynovitis (inflammation and scarring of tendons and their lining tissues). These processes ultimately result in limited movement of the fingers. Raynaud’s phenomenon — when fingers turn blue or white with cold — occurs in 95 percent of people with scleroderma and in 40 percent of persons with lupus.
The primary treatment approaches to SSc are quite different from those for lupus. Therefore, treatment for scleroderma-like problems in people with lupus should be individualized and directed at the particular problems present at any given time.
Lupus and Overlap
Mixed Connective Tissue Disease
Some individuals have symptoms and signs of three connective tissue diseases, i.e., lupus, polymyositis-dermatomyositis, and scleroderma. At any given time, the combination of problems encountered by the patient may vary considerably, from no active disease to features of one, two, or all three of these conditions at the same time. These persons often (but not always) have one specific blood antibody in their blood (anti-U1RNP antibody) but not the other antibodies commonly associated with SLE, SSc, or PM-DM. Whether this is an entirely separate disease, or a situation in which one person has three diseases, remains uncertain. However, the presence of a single blood antibody is a strong point in favor of a distinctive disease. As in the other circumstances mentioned above, treatment should be individualized and directed at the particular problems present at any given time.
Henrik Sjögren was a Swedish ophthalmologist and the first to recognize that dry eyes and dry mouth were often found in people with connective tissue diseases. These symptoms are caused by the accumulation of immune system cells (lymphocytes) in and around tear and saliva producing glands. The build-up of cells disturbs the function of these glands and leads to reduced production of tears and saliva. This condition also interferes with the protective mechanisms of the eye and mouth. Eye inflammation and ulcers of the cornea, as well as fungal infections of the mouth (thrush), occur with increased frequency in those with Sjogren’s. Rarely, a person with this disorder develops a malignancy (cancer) affecting the lymphocytes (lymphoma). Today, Sjogren’s syndrome is itself accorded the status of a distinct connective tissue disorder.
Sjogren’s Syndrome also occurs in some people with lupus. They have an increased frequency of sun-sensitive rashes and Sjogren’s-related blood antibodies (anti-SSA and anti-SSB antibodies). Women with anti-SSA antibodies are at increased risk of having babies with “neonatal lupus.” Symptoms in the infant can be as minor as a temporary lupus-like skin rash, or as serious as permanent damage to the electrical system of the heart which results in a very slow heart rate (complete heart block).
The best treatments for Sjogren’s Syndrome include: artificial tears (usually satisfactory) and either artificial saliva (most often unsatisfactory) or a saliva stimulant such as pilocarpine, and hydroxychloroquine (Plaquenil). Eye drops containing cyclosporin have also just been introduced and have significant benefit for dry eyes in some cases. Arthritis, fatigue and skin rash in people with Sjogren’s is often treated with Plaquenil.
Frequency Of Overlap Syndromes In People With Lupus
The majority of people with lupus have lupus alone. Between 5 and 30 percent of people with lupus report having overlap symptoms. The likelihood of a person with lupus also having an overlap disease is 15 percent, distributed as follows:
|Overlap Disease||Approximate Rate
|Mixed Connective Tissue Disease||
Heredity And Overlap
It is unusual (less than 10 percent of the time) for a person with lupus to have a close family member (parent, child, brother, or sister) who also suffers from lupus. However, it is common for persons with lupus to have relatives (including grandparents, aunts/uncles, cousins) with other connective tissue diseases such as rheumatoid arthritis, Sjogren’s Syndrome, scleroderma, etc. These co-occurrences raise the possibility that heredity may be a factor in all of the connective tissue diseases. Most scientists agree that important hereditary associations with these diseases are present in some families. Additional research is needed to shed light on this important question.
Prognosis For People With Lupus And Overlap Syndromes
It is important for those with lupus to be aware of the symptoms that might indicate the development of “overlap” features, since these symptoms and abnormalities may be best managed with treatments not typically used for lupus. Fortunately, when an overlap syndrome is present, the symptoms characteristic of the other connective tissue diseases involved are usually mild and not life-threatening.
This information is from the Lupus Cleveland Website. It shows the types of things used to treat Lupus and all the different manifestations of the disease. It is well written and easy to read. If you would like to understand Lupus better, this is a good article to read. Enjoy!
Currently, there is no cure for lupus; however, early diagnosis and proper medical treatment can significantly help to control the disease. Symptoms often vary from one individual to another and treatment is based on specific indications in each person. Still, a few general guidelines can be listed:
- Regular rest is important when the disease is active. When the disease is in remission, increased physical activity is encouraged to increase joint flexibility and muscle strength.
- For the individual who is photosensitive, the regular use of sunscreens will help prevent rashes and irritations. For those who develop rashes, treatment with cortisone creams is very helpful.
- Achy joints (arthralgia) and arthritis generally respond to aspirin or aspirin-like drugs (non-steroidal anti-inflammatory drugs).
- The anti-malarial drug hydroxcholorquin (Plaquenil) is often prescribed for more severe joint or skin involvement.
- Cortisone drugs (the most commonly prescribed is Prednisone) are often used for more severe organ involvement. Not everyone with SLE needs cortisone. Cortisone, particularly in higher doses, has possible hazardous side effects.
- If you have a fever (over 100 degrees F), call your doctor.
- Go to your doctor for regular checkups. Regular checkups usually include blood and urine tests.
- When in doubt, ask. Call a doctor.
Treatment plans should meet the individual patient’s needs and may change over time. To develop a treatment plan, the doctor tries to:
- Prevent flares
- Treat flares when they do occur
- Minimize complications
The doctor and patient should reevaluate the plan regularly to ensure that it is as effective as possible.
Several types of drugs are used to treat lupus. For people with joint pain, fever, and swelling, drugs that decrease inflammation, referred to as nonsteroidal anti-inflammatory drugs, or NSAIDs, are often used.
While some NSAIDs are available over the counter, a doctor’s prescription is necessary for others.
Common side effects of NSAIDs include stomach upset, heartburn, diarrhea, and fluid retention.
Some lupus patients also develop liver and kidney inflammation while taking NSAIDs. It is especially important to stay in close contact with the doctor while taking NSAIDs.
Antimalarials are another type of drug commonly used to treat lupus. These drugs were originally used to treat malaria, but they are also useful in treating lupus.
Antimalarials may be used alone or in combination with other drugs to treat fatigue, joint pain, skin rashes, and inflammation of the lungs. Continuous treatment with anti-malarials may prevent flares from recurring.
Side effects of antimalarials may include stomach upset and, very rarely, damage to the retina of the eye.
The most common treatment for lupus is corticoid steroid hormones. Corticoid steroids are related to cortisol, a natural anti-inflammatory hormone. They hold back inflammation very quickly.
Corticoid steroids can be given orally, in creams applied to the skin, or by injection. Since they are potent drugs, the doctor will use the lowest dose with the greatest benefit.
Short-term side effects of corticoid steroids include swelling, increased appetite, weight gain, and emotional ups and downs. These side effects usually stop when the drug is stopped.
It can be dangerous to stop taking corticoid steroids suddenly, so it is very important that a doctor recommend changes for the corticoid steroid dose.
Sometimes doctors give very large amounts of corticoid steroid for a short time by vein. With this treatment, typical side effects are less likely and slow withdrawal is not necessary.
Long-term side effects of corticoid steroids can include stretch marks, excessive hair growth, weakened or damaged bones, high blood pressure, damage to the arteries, high blood sugar, infections, and cataracts.
Typically, the higher the dose of corticoid steroids, the more severe the side effects are. The longer corticoid steroids are taken, the greater the risk of side effects becomes.
People with lupus who use corticoid steroids should talk to their doctors about taking supplemental calcium and Vitamin D. These supplements reduce the risk of fragile bones called osteoporosis.
For patients whose kidneys or central nervous systems are affected by lupus, a type of drug called an immunosuppressive may be used. Immunosuppressive hold the immune system back by blocking the production of some immune cells.
Immunosuppressive may be given orally or by IV.
Side effects of immunosuppressive may include nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection. The longer the treatment with immunosuppressive, the higher the risk of side effects becomes.
Since some treatments may cause harmful side effects, it is important to tell the doctor about any side effects right away. It is also important NOT to stop or change treatment without asking the doctor first.
The title says it all… a new day today! It is as if all the last few days never happened and things might be getting better, finally, but I will not hold my breath…so here is today’s installment living with lupus and the ups and downs we experience on this roller coaster ride…enjoy the read!
Well, all the gloom and doom I have been feeling has lifted and this morning, I woke up feeling wonderful. Go figure. I have been in a lot of pain and having my joints all acting awfully. Then, after a few days rest, I am feeling much improved. Not all the way better but indeed improved. Hmmm, I wonder… but I digress…
You see, this disease can do things like this and make you feel like you are losing your mind at times. It is hard to wrap your mind around one day laying in bed and the next feeling good enough to paint rooms and cook dinner. Yet, it is how this lupus treats us. Some days, you can be fine and busy and productive and in an hour or so, be flat on your back in bed. It is the nature of the beast, the beast being the wolf called lupus.
It is the reason many of us have had to leave lucrative careers and retire early or go on disability. It cannot be predicted which days you can work so since those “dream” jobs of working at home are few and far between, we stop working. It can make you feel like a failure when you cannot work anymore like you used to.
So, I did get a lot accomplished today despite the fact that I am still in pain and my joints are still hurting. Just not as bad as they have been. Now, tomorrow we will see if I overdid it. I hope not, but I am afraid that when these good days come, I tend to overdo to make up for the days when I could not do things. When that happens, I pay a heavy price the next day, usually, but I have been pleasantly surprised sometimes too!
My daughter did call today and told me that the school my granddaughter goes to had another mishap with the bus and getting her home. This is the second time in the month and what makes it worse is my granddaughter is only 5 and in kindergarten. If my daughter doesn’t call the school, I probably will. It is reprehensible what they have done in this first month! I am livid and will not settle down until something is done to rectify it or someone listens and makes amends. Poor thing, my granddaughter is dreading school now and she loved it last year! The difference? She attended private school last year and this year she is in public schools. It is a sad commentary on the public school system that these things can occur, especially in this day and time when safety is a major concern.
Another thing that has occurred is that my hubs went camping for a few days with just our dog for company. He enjoyed it but came home today with a stomach bug. Bad way to end a relaxing trip.
Well, now tomorrow is a new day and I hope it will find everyone happy and pain free! May you be able to accomplish all the things on your list and feel a sense of pride and accomplishment in doing so.