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lisatru62 posted:
Recently diagnosed with Lupus due to a cyst on my thigh. Is this common to diagnose based on a cyst? Also recently started Plaquenil was wondering if others are taking it and their results. I've been taken off all NSAIDs because I apparently also have bad kidneys. Are narcotics safe to take long term or at least for several months?
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lupylisa44 responded:
Do you have discoid lupus or systemic lupus? I have never heard of systemic lupus being diagnosed this way, but I guess anything is possible!

I have been taking plaquenil for nearly 28 years! It is usually the first line of defense for lupus patients. It usually works very well for most people. It can take several month for it to start working, so be patient!

Plaquenil can damage your retinas. It is very rare, but it is possible. It is very important for you to get a baseline eye exam before starting plaquenil and then get regular eye checks and visual field testing while you are on it.

Narcotic pain meds should be used in short duration due to the possibility of addiction/physical dependence issues. I would not recommend it for long term use. It is not an anti-inflammatory but, sometimes Tylenol extended release can help with the pain.


I hope this helps!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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lisatru62 replied to lupylisa44's response:
According to the biopsy report it is Lupus Erythematosus Profundus, it effects the subcutaneous fat and causes nodules under the skin. I guess it is related to systemic lupus erythematosus. I am still trying to figure out exactly what it is and I am lucky to have the actual lab reports. I've been told I'm lucky in the diagnosis since many people go years with not knowing and having to experiment with various drug therapies.

The lupus is currently working on my kidneys as my various labs came back bad. They are keeping an eye on things and I have to go in for more test in two weeks. I also have hypertension which probably isn't helping the kidney thing. They took me off all NSAIDs so I guess my only option is narcotics but I have to find one that doesn't make me sick. I tried Tylenol with little help

I feel like a rat in a maze that the doctors are experimenting on, they stuck me in the middle of the maze and now I am trying to find my way back to normal. Hoping the Plaquenil works.
 
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tikkitembo replied to lisatru62's response:
Hi i am 22 and have a small lump on neck have been having pain in neck shoulders and pain in leg all on the right side had ultrasound they saw nothing abnormal went to eye docter he said i has astigmatism my dad had lupus and m grandad was diagnosed last year what type of symptoms were u experiencing before diagnoses
 
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lisatru62 replied to tikkitembo's response:
I've heard that if someone in your family has it you are more likely to develop this disease also. I would get the lump in your neck biopsied as I had one in my neck years prior removed, but no autoimmune biopsy, and then about two years ago the lump in my thigh formed. I didn't do anything because my general practitioner thought it was benign, which it was, so I didn't have to get it removed right away.

Fast forward to last year and the hair loss, fatigue, joint pain was getting really bad so I put my foot down and got a referral to dermatology for the hair loss. The Dermatologist said it might be autoimmune because it causes hair loss and ran some tests. The tests were positive for autoimmune, they asked if I had any cysts and then biopsied the one in my thigh, the cyst has characteristics of Lupus Erythematosus Profundus.

If you experience hair loss or thinning, fatigue, joint pain, muscle weakness, heart palpitations, low red blood cell counts or anemia, sensitivity to light you might want to have some blood tests done to see if you are leaning towards an autoimmune disease. You do not have to experience all the symptoms to have the disease. There is a list of common symptoms on this website and if you experience at least four I think it would be a good idea to discuss this disease option with your doctor or get a referral to Rheumatology.
 
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Lupussufferersince15 replied to lisatru62's response:
Hi, I'm 22 and I've been on Plaquenil / Hydroxychloroquin Sulfate for 7 years now it has gotten my lupus to a steady point where we can control it. I've been on pain meds for 7 years also, I started with Darvocet for 5 and then that was taken off the market due to it causing rapid heart rate. I quit it cold turkey no withdrawals or anything, all I used it for was to take the edge off the pain at night so I can sleep. Now I'm on Flexeril and Vicodin. I'd say try some lower dosed pain meds and see what works for you. If you need to take them daily like me, then do so and just follow up with your doctor.
Also the whole family thing, I was diagnosed at the age of 15 and last year or the year before my Grandma was diagnosed with Lupus. I believe strongly that there is a genetic link to this disease. Oh and when I started with symptoms all I had was joint pain so like tikitembo said not all of the symptoms need to be there to get checked.


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