View Full Version : still learning
03-11-2008, 04:19 AM
I was diagnosed with Lupus in December of 06 by my family doctor who in tern sent me to a rheumatologist. The rheumatologist couldn't argue with my symptoms and the two abnormal blood test findings but wasn't sure about the diagnosis of Lupus which I now understand to be normal in the diagnosing process. I had a positive ANA and it was rather high and a very elevated double stranded anti DNA (I think that is what it was called brain cramp). So coupled with the classic symtoms and those two abnormal labs I was started on a treatment regimen, prednisone 10mg and muscle relaxers. I actually did very well once the symptoms were under control, in fact in early December of 07 my daily prednisone had been reduced to 2mg a day and I was hardly ever taking the muscle relaxers. By late December of 07 I felt it coming on, joint pain, hair falling out, sores on my scalp, disruptive sleep, weight loss, etc. I waited til my scheduled appointment in January and he increased my prednisone to 5mg and started me back on muscle relaxers. Well the symptoms continued to worsen, some would subside others would start so I saw the doctor again a month later, he had drawn labs after my January visit and said that my Lupus was not "active". Well to me it sure seemed active. He started me on Effexor 75mg. Two weeks later I was calling back in. He said I had a full blown case of Fibromyalgia, gave me a new muscle relaxer and som Lidoderm patches to apply to the sore muscles, and ordered physical therapy. Two weeks later still no relief so he increased the Effexor to 150mg. With that history stated I have a few questions.
1. Should the doctor still be relying on the labs drawn in January early in the flare?
2. How quickly do things change in your lab work?
So far he tells me I have non organ threatening Lupus, but everything I read says you will not know when it does effect your organs. I have been having pain upon taking a deep breath and pain in my chest. When I drink something cold I have a spasm that goes across my chest wall to the left as I swallow. I have been having flank pain and changes in urination, yet the doctor just seems to not be listening. I'm so new I don't know if I should be going else where and I don't know if he is truely not taking this seriously enough. Everyone has said that you would be much sicker but yet I feel pretty darn sick.
Your help is much appreciated. I welcome all your suggestions.
03-11-2008, 10:52 AM
If your blood work etc. for Lupus are coming back negative, it is quite possible that your Fibromyalgia is active and causing you many of the problems that you describe. I also have Lupus and Fibromyalgia. The widespread muscle pain and burning are attributed to my Fibromyalgia. Like you, I do not have organ involvement with my Lupus, but my Fibro is very active and kicks my butt on a regular basis. Lupus and Fibromyalgia share some common symptoms: Pain, Fatigue, Brain Fog, headaches, dizziness, etc.
However, hair loss and mouth sores are not symptoms of Fibromyalgia. Now, it is also possible to have Lupus with negative labs. Lupus is a disease that is hard to define because it changes and, yes, it can change quickly. Symptoms come and go and new symptoms appear. It is for this reason that most doctors will routinely run certain tests to determine if your disease is active, what parts of your body are involved and if your medications need to be changed or new ones added. It sounds as if you are due for new blood work and lab tests.
Here is some information about Fibromyagia, in the event that your other symptoms are due to this and not to your Lupus:
The Fibromyalgia pain is commonly located in the neck, shoulders, back, and hips. The tenderness is usually and frequently worse in the mornings and has been described as flulike, burning, throbbing, aching, or stabbing.
Fatigue is another frequent complaint associated with fibromyalgia. In fact, it occurs so commonly that some doctors think fibromyalgia and chronic fatigue syndrome are the same disease. The severity of the fatigue can range from mild to incapacitating. In its worse form, the fatigue can be so debilitating that we have trouble doing daily activities and some of us have trouble keeping our jobs. No amount of sleep at night or rest during the day seems to help at all.
It is not uncommon, with Fibromyalgia, to feel intense pain in your ribcage and chest. Chest pain in fibromyalgia is usually nothing to worry about, but occasionally it can indicate other problems. The chest pain associated with fibromyalgia is referred to as costochondritis. It is an inflammation of the cartilage that joins the ribs to the chest bone. It is this inflammation that causes the sharp chest pains inside the chest wall. The pain of costochondritis often mimics the pain of cardiac problems, including heart attacks and stroke. This can be quite scary sometimes, but costochondiritis rarely causes any physical complications with the heart.
Costochondritis affects about 60% to 70% of fibromyalgia sufferers and it is very common in women, especially between the ages of 20 and 40. Costochondritis rib pain can last for weeks and even months, and can reappear at different intervals throughout your illness.
Costochondritis pain is often described as a stabbing or aching pain in the ribs. The sharp pain caused by costochondritis generally begins in the chest. This pain can then radiate outwards, attacking the shoulders, neck, and upper abdomen. Costochondritis pain can last for long periods of time and chronic costochondritis is not uncommon. However, most pain should be gone within 6 months to a year from the onset of symptoms.
costochondritis symptoms include: sharp, stabbing pain in the front of the chest - ribs that are sore to the touch - pain on the left or right side of the chest - upper chest pains - burning pain in the ribs - pain that radiates up the back of the neck and shoulders - pain in your chest when you sneeze or cough - pain that increases with activity, exertion, or deep breathing -
pain that decreases with rest, movement, or slow breathing
Costochondritis is also associated with other, secondary symptoms. These include: rapid heart rate - irregular heart rate - shortness of breath or difficulty breathing.
Ask your doctor about Plaquenil ( (Hydroxychloroquine) and NSAIDs for your pain. Since you have a high ANA, ask your doctor about Prednisone (Corticosteroids). These are the cornerstone treatments for Lupus. The Plaquenil will help with the mouth sores and hair loss and, sometimes, with the fatigue. The prednisone is a cortisteroid and an immunosuppressant. The immune system protects against foreign bacteria and viruses. In Lupus, the immune system produces antibodies, which become overactive and cause undesirable effects. Prednisone suppresses the production of these antibodies.
You are takine Effexor. This drug is an antidepressant in a group of drugs called selective serotonin and norepinephrine reuptake inhibitors (SSNRIs). Anti-depressants are often used to treat Fibromyalgia. Effexor is not approved for use for Fibromyalgia. This means that when prescribed for the treatment of fibromyalgia, Effexor is being used "off-label." Although it is not entirely clear how Effexor works for fibromyalgia, the drug may help block the nerve pain signals in the spinal cord or brain. This may help with the pain caused by fibromyalgia.
Using Effexor for fibromyalgia can cause serious side effects. Weight gain and sexual side effects are common. Less common, but life threatening, is the increased risk of suicide. Addiction and subsequent withdrawal symptoms also rank on the list of serious Effexor side effects.
Only you can decide if Effexor is the best means of treating your fibromylagia symptoms. It is important that you discuss side effect concerns with your doctor (especially since he keeps upping your dosage).
I hope, with this information, that you can have an informed conversation with your doctor about your lab work, your treatment and your symptoms. I wish you the very best.
Peace and Blessings
03-11-2008, 01:11 PM
Thank you SaySusie for that wonderful piece of information. I am currently on Prednisone 5mg a day. The prescription of Effexor came before the Fibro symptoms. I understood it would help increase my pain tolerance and relax my musles. I am concerned with the side effects and that once I start I'll never be off of it. It is good to know that considering I have many more symptoms since my last lab draw that they should be drawn again. I'm not sure what he even checked just that he told me my lupus was not active. I'm going to start asking for copies of all lab work. He waited an entire year to recheck my labs, but then again I was not having the problems I'm having now. I've had to call twice and had an extra visit between scheduled visit but he has never once suggested rechecking my labs. Does you ANA ever go back to being negative once you have a positive reading? Will the numbers on the double stranded DNA ever go down? Mine were over 400, I can't remember the exact count but was told they were very high.
03-12-2008, 10:11 AM
One of the maddening things about Lupus is the fact that it changes. Yes, ANA has been known to be positive at one reading and negative at another (especially after treatment). This is one of the reasons why we sometimes will have a period of remission in our disease. Lupus is a disease that is replete with relapse/remission. There will be times when our disease is not very active, when our lab work comes back negative and we feel relatively healthy. Then, our disease will flare; some lab work comes back positive and we are very ill - then, our disease will become inactive (or less active), our labs will be negative, and we feel good.....only to flare up again with positive labs again and overall malaise.
Some Lupus patients maintain remission for months or even years. There is no way to predict when remission will occur or how long it will last. Conversely, there is no way to predict when the disease will flare or how long that flare will last. The best thing that we can do is to take our medications, make the appropriate lifestyle changes and take the appropriate precautions in order to avoid a flare. But, with Lupus, nothing is predictable!
Because of the relapse/remission syndrome of this disease, we should have our labs done routinely. This is something that you can insist upon, demand it, in fact! It is important that you become pro-active in your health care. Insisting upon seeing the results of your lab work is a giant step in the right direction :lol:
I wish you the very best!!
Peace and Blessings
03-13-2008, 04:56 AM
Thank you for all your help. I've read many of your posted anwsers in the forums, all Lupus suffers are very fortunate to have you. Your knowledge is amazing and I don't know how you do it while suffering from the same disease. You are truely amazing and very much appreciated by myself.
03-13-2008, 11:48 AM
Being proactive with lupus is something I've been thinking about lately in terms of kidney involvement (I don't have any involvement at the moment and would like to keep it that way). I take my meds, and keep my doctor appts, and will now start lowing my salt and watching my blood pressure. Is my Rheummy supposed to be ordering urine tests? If so how often? Will she know what to look for if something starts to go wrong? What else can be done to be proactive with lupus?
03-13-2008, 08:49 PM
I wish I had the answers to your questions but actually I can't wait to read the answers because they are good questions. I'm just so new to all this that I feel like I don't know what to expect. I have been so extra tired this week that normally I'd be asleep right now but I actually woke myself up choking and had to make a cup of hot tea. I've had some strange issues with swallowing this week and I'm wondering if the choking while asleep and difficulty swallowing has something to do with the flare I've been having since late December. Sorry if I'm rambling but I'm rather tired, just can't stop clearing my throat enough to lay back down.
03-14-2008, 09:29 AM
You are most welcome. The purpose of this site is to educate, provide comfort, understanding, and to make sure that no one ever feels alone. Thank you for letting me know that I am accomplishing that purpose.
With reference to your choking at night...it may be something as simple as chronic rhinitis & post nasal drip (I suffer from this and find myself waking up choking like you). Because Lupus causes inflammation in all areas of our body, many of us suffer from chronic inflammation in the lining of the tissues of the nose. One of the most common characteristics of chronic rhinitis is post–nasal drip. Post–nasal drip may lead to chronic sore throat, a chronic cough and sometimes, chocking from the excess mucous. Also, because Lupus patients are more prone to viruses, we often get chronic rhinitis and post nasal drip due to this (or a combination of both). Post–nasal drip can be caused by excessive or thick secretions or impairment in the normal clearance of mucus from the nose or throat.
Swallowing problems can make it difficult to clear normal secretions. This may result in the accumulation of material in the throat which can spill into the voice box, causing hoarseness, throat clearing, or cough. The following factors can contribute to swallowing problems:
* Advancing age: This will lead to decreased strength and coordination in swallowing.
* Stress: Stress leads to muscle spasm or "lump in throat." Also a nervous habit of frequent throat clearing will make the situation worse.
* Narrowing of the throat due to tumors or other conditions: This will impair the passage of food.
* Gastroesophageal reflux (GERD)
* Nerve or muscle disorders: (stroke, and muscle diseases, etc.)
Prednisone, methylprednisolone (Medrol), hydrocortisone (Hydrocortone, Cortef)] are highly effective in treating chronic rhinitis & post nasal drip. However, most doctors will recommend steroid nasal sprays: [beclomethasone dipropionate (Vancenase, Beconase, Beconase AQ, Vancenase AQ, Vancenase AQ DS, Beconase AQ), fluticasone propionate (Flonase), triamcinolone acetonide (Nasacort, Nasacort AQ), budesonide Rhinocort, Rhinocort Aqua)] These medications reduce inflammation, but do not have the side–effects of oral (systemic) steroids.
I mentioned GERD above (Gastroesophageal reflux disease). The main symptom of GERD in adults is frequent heartburn, also called acid indigestion—burning-type pain in the lower part of the mid-chest, behind the breast bone, and in the mid-abdomen. You may also experience a dry cough, asthma symptoms, or trouble swallowing.
Whatever the cause, you should mention this to your doctor so that it can be treated!
Since you have no kidney involvement right now, your doctors are probably not really inclined to do urinalysis to check for proteinura (protein leak in urine indicating kidney involvment). Often, doctors will run a 24 hour urine on a yearly basis (just to make sure that there are no indications of kidney problems). Have you done a 24 hour urine? This is when you collect all of your urine for a 24 hour period. If you've not done one, ask you doctor about it as a preventative measure. If you doctor does not feel that it is necessary, then ask for a routine urinalysis.
If you are seeing a rheumatologist, then yes, he/she will know what to look for if something is going wrong. But, just for your own edification, these are the signs you should look for that might indicate kidney problems:
* frequent headaches or tiredness
* itchy all over your body
* more or less than normal urination
* hematuria or blood in the urine
* urine that appears pink
* urine that appears foamy
* edema or swelling in the hands and feet or numbness
* loss of appetite
* nausea and vomiting
* trouble concentrating
* darkening skin
* muscle cramps
The kidneys are part of your urinary system. They also regulate a number of chemicals in our blood stream and release hormones such as:
Active form of vitamin D to help regulate the calcium in our blood for bone building; Renin which helps regulate blood pressure; Erythropoietin or EPO which helps the bone marrow make red blood cells.
Lupus is one of several diseases that can cause kidney failure, so it is important to make sure that they are functioning properly. :lol:
Peace and Blessings