Darla, Lynnwood has given you a lot of good information and advice. I have had lupus and polymyositis for at least 15 years and faced terrible odds of recovery from PM which left me near death,...
Hope my video helps people deal with their chronic illness and live the best life they can. My story was so dramatic that it had to be told and the Myositis Association made it several years ago....
I downhill ski and ski as well as I did as a professional decades ago. Am approaching 80 and ski very fast but do not race, ski bumps or ultra steeps as I once did. Polymyositis took 40 lbs of muscle...
I also have raynauds and have found ways to deal with it. In my home I do turn of the heat a little and also dress warmer. Not just the hands but wear something warm like a fleece vest. Your body...
Your lower counts are probably being caused by the same cause ….lupus. IVIG does a good job of controlling lupus but needs to be coded as something else at least for medicare to approve its'...
Melissa, I also have low platelets, sometimes as low as 5. When they plummet I am put on steroids and given an infusion or two of IVIG to get lupus under control. Unfortunately, the treatment only...
As mentioned in my post I have already seen the whole list of my docs and been tested for many different things. No red flags. I am nearing 80 but I do not believe that age is what is causing the...
MCTD is classicly defined as having symptoms of sle lupus, polymyositis (also dermatomyocitis), and scleroderma. I have MCTD with symptoms of lupus and pm and had an extreme and life threatening...
lupus is not diagnosed by a single lab test. It is diagnosed by a combination of clinical symptoms and labs which sometimes confirm the diagnosis. There are specific tests for lupus which help to...
I have had polymyositis since 2005. Lupus is an entirely different disease although some of the symptoms can be similar. Many of us have symptoms of both diseases in an overlap condition called mixed...
Diagnosis is not that difficult once the anti rnp antibody shows up. Most experienced rheumys will be able to diagnose just from symptoms. Sometimes the condition is not fully developed with clinical...
There are plenty of doctors in Chicago capable of treating mctd. It is not really much different from treating lupus or myositis or other similar overlap autoimmune conditions. Contact me and I can...
Fawn, I live in Wheaton and have MCTD since 2005. In order for an mctd diagnosis the anti rnp antibody has to show up at some point. Did it for you? Were you treated at Childrens Memorial Hospital?...
MCTD is not lupus but an overlap condition that often includes lupus, polymyositis and/or scleroderma symptoms. Lupus can produce headaches for various reasons and can be very difficult to alleviate...
Being positive to the anti RNP antibody means you have an overlap condition called mixed connective tissue disease. I have it. The classic definition has been that you can have symptoms of sle lupus,...
Remember Carol well. Scleroderma is a really nasty disease and I can't imagine what she went through. I am doing OK but lupus has been giving me fits the past 4 years. Liver (now ok) and platelets...
Lupus can attack the liver directly and cause a type of hepatitis. Your AST, ALT and other liver markers will be elevated. If you have these you should see a hepatologist. Treatment is generally to...
It is possible that you will go and stay in remission but that is not the usual path. Once you have an AI disease it is usually your "friend" for life. Lupus presents in many ways and I had blood...
Find another rheumy and get a second opinion. Labs are the not the end all for diagnosis and you describe symptoms that need treatment and could very well be lupus. It is true that some can have...
You need a PCP for your overall care and a rheumatologist for your autoimmune problems....
I had low platelets and RBC for at least 15 years but otherwise healthy. Then in 2004 my platelets dropped to almost 0. Nobody could find anything wrong and my hematologists said he thought I might...
I also have mctd with symptoms of sle lupus and polymyositis. Also experienced autoimmune hepatitis 3 years ago brought on by lupus which stopped as mysteriously as it started. Feel free to ask any...
I would not see an immunologist unless you had a specific reason for doing so. A good friend is an immunologist/allergist and has autoimmune diseases but sees a rheumatologist, not someone in her...
Lots of oral problems with lupus for some patients. Thrush is common with lupus as well as other AI diseases particularly if on any dose of prednisone. I had it for years but avoided the other oral...
Document your symptoms in writing and give it to the doctor. I prepare a one page synopsis (got to keep it short and use bullet points) for any new doctor or when I need to document what has been...
Benlysta is the newest treatment and was developed for lupus. I have several friends who have been on it for several years and it is working for them. Others tried it but it did not work. It is an...
To be effective treatment has to be long term. Often a cocktail of meds. Ask your rheumy if taking a lower dose of pred until your symptoms come under control is a reasonable approach. I have never...
UCtD is the diagnose for overlap disease when it is not clear exactly what the overlap is. It is the "I don't know exactly what my patient has diagnosis" but as other have already said docs will...
Some can recognize a flare. In my case I do not because it goes after organs or blood....not the usual stuff. every case is different but most patients do know when a flare is coming and have a...
Your clinical symptoms point toward lupus as well as your elevated ANA. Lupus can take years to diagnose in some cases and can be maddening. Short course of treatment do not work. They provide...
Prednisone has many side effects but not all patients have the same ones. Some of us tolerate it well and others not well at all. The biggest risk is high doses for a long time which can bring into...
My wife has BPPV which is the most common cause of vertigo. In some cases it is chronic and she has had several severe rounds of it and been treated by vestibular therapist. Fortunately it has been...
Thank you. It is simply part of my pay back for surviving and being able to live an active and meaningful life again. If those of us who successfully cope (most of the time) don't share then others...
Lupus and water retention is usually due to lupus nephritis but can also be driven by meds like prednisone. You should see a nephrologist to make sure your kidney function is ok. I gained 20 lbs of...
Lynnwood, Sorry but I have been in my own tangle for the past 2 years and not as active here and elsewhere. We have the same problem on the Myositis Assn forum. Only a handful of us really...
Melissa, Lupus attacked my liver quite severely 3 years ago and I have been seeing a hepatologist ever since. After about 3-4 months lupus ceased the attack and my numbers returned to normal and are...
Probably were caused by lupus because I didn't have them before getting lupus and haven't had them for years. I believe it was general inflammation and caused problems absorbing nutrients and meds....
Most common symptoms are blood and/or protein in urine. Blood sometimes is so slight it is not that noticeable and protein results in "bubbly" urine. Also, edema mainly in lower limbs....ankles,...
EBV has been linked as a trigger for different AI diseases and SLE lupus is one of them. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3766599/ Bill...
Your rheumy might try to dramatically increase your prednisone dose and then slowly taper it. Low doses are more maintenance doses when symptoms are under control but you need to really kick your...
I was almost 65 and a man and got lupus. It is much more common for women to get lupus during child bearing years but lupus can start at almost any age with either men or women. Diagnosis of lupus is...
Doubt that the meds you are taking caused lupus if that is what you have. Your cpk number is in normal range. As Lynnewood advised diagnosing yourself based on the internet usually leads to a wrong...
https://www.ncbi.nlm.nih.gov/pubmed/23423252 Vertigo can be caused by many different things and Lupus is one of them. Most common type is called BPPV which is benign proximal positional vertigo and...
Your nephrologist sounds like a doctor to replace....
Have you had a kidney biopsy? I had lupus nephritis which was confirmed by the biopsy and that is one of the most common symptoms of lupus....
Combination of clinical symptoms and labs which is how most are diagnosed. Labs alone do not diagnose lupus although there is a lupus panel that looks at autoantibodies commonly associated with...
I was in my mid 60s when I got it. Anybody at any age can get lupus although it is most common for women in child bearing years. I do not fit that description! Bill...
Acthar makes your body produce more cortisol rather than taking prednisone which is the synthetic. It has been around but not widely used for 50 years. It does seem to work for some but not others...
Corticosteroids address both inflammation and the immune system by suppressing it. Steroids are often the first treatment, particularly for severe cases of lupus or other autoimmune diseases, because...