I haven’t taken lupus meds in over 2 years; however, I am now having a flare (I.e. notable fatigue, muscle aches, fever) at least once a month. When I flare I am usually in the bed for two days.
How often do you have lupus flares? Are they less frequent with medication?
I have tried every medicine they have for Lupus. Plaquenil, crllcept, imuran, methotrexate, and all of them started eating my red blood cells up to the point I was put in the hospital. My rheumatologist has me do Benalysta infusions, but that left me with a 7,000 dollar bill when it should have been paid for and it wasn’t helping much. After doing those infusions I haven’t been back since because they racked on 7,000 dollars to my bill and she won’t see me until it’s paid. My family doctor has been helping me manage my lupus so now I go to a pain clinic. I’m gonna get radio frequency procedure to burn the nerves in my back. I have never been in remission and have several other diseases I acquired after my lupus diagnosis. I have carpal tunnel, achalasia ( difficulty swallowing), migraine headaches, hashimotos ( hyper/hypothyroidism), I had a ruptured disc in my back and it damaged nerves in my legs, I had a stroke 2 years ago, I have hypertension I have eczema in my ears, it’s just been an uphill battle. I’m achy and tired all the time to the point where all I want to do is sleep. However I have never let this disease stop me from doing the things I want to do. I recently received my educational aid license and I will be an instructional aid teaching children in an elementary school trust me it is the high light of my life and very unexpected. Those kids help me deal with lupus. And I have a friend I work with that has lupus too and my cousin has lupus Nephritis ( messes with your kidneys). So I have people I can talk to and they understand what I’m going thru. I exercise a little most times I’m just too fatigued to do it. But I wish you all good health and I hope you receive all the answers to your questions. The best way to combat lupus is having a great doctor. The one I have now is awesome, he has me doing a lot of homeopathic medicine and it’s working for me.
I’ve also learned that you have to fight to save yourself. If you don’t think your Dr. is helping then get a new Dr. right away. The John Hopkins Hospital in Baltimore, Maryland has a lupus clinic, a Sjogrens clinic, and an arthritis clinic all in the same vicinity. It would be worth the trip. I drove over 20 hours to the Thrive Health Systems in Colorado Springs, Colorado. They saved my life. I was in a bad way when I got there. It was worth every minute and every dime! We had to borrow from my Husbands retirement to go but your talking about your life here. Dr. Mathew Spaur was wonderful!
Ok I been diagnosed over 10years and I also decided to go gluten free. Well going gluten free leases the pain I go thru with lupus. I was the best decision I made for my self. I am not in so much pain any more, but I still have flair up, also I do not take any meds never had too. I managed it with exercise rest and gluten free. Also try and stay out of the sun. It will cause flair up. Wear a hat. I am not saying the pain will go away but it is not as bad it used to be.
Reading everyone's story, is certainly a strength in numbers moment. I learned early on that Lupus is a rare animal that takes each one of us differently. It took so long to get diagnosed, my faith in doctors and the medical community was gone. I felt like a guinea pig, and was told many times that everything was "in your head," that I almost gave up completely. After being sent to Loyola (Chicago), only to turn around and go to The Cleveland Clinic. (I live in Idaho.) So, then I was given 3-5 years, and needed aggressive treatment. I was given Cytoxin (a nasty chemotherapy), for a total of 13 months. My main problem is vascular. It affects my stomach (vomiting), followed by potassium deficiency (heart), and over the years, with too many hospitalizations to count, I now end up in the ICU, these days.
Sorry for carrying on so much...
I've been taking plaquenil since diagnosed in 2004. I do have sun sensitivity, but not severe. I really have flares. When I do flare, I have problems with low platlet counts. I've taking steroids in the past, but the side effects are awful for me. I've refused prednisone. Rituxan or Promacta will be the next treatment options for me to consider. I do think taking the plaquenil as keep my flares at a minimal. I'm a prayer warrior, so I find peace in the word of God & I keep a positive attitude.
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