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    Thank you Saysusie. My rheumy is really...

    Thank you Saysusie. My rheumy is really conservative and has not prescribed anything beyond plaquenil since I started seeing him 1.5 years ago. I have patiently waited to feel better and havent...
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    Has anyone used quinacrine?

    I have been on 400 mg of plaquenil for 9 months. It has helped some but I have pretty low stamina and feel flu-ish and unwell everyday. All my labs are stable.

    My rheumy said I could add 50 mg/day...
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    I get random hives that sound like that. Mine go...

    I get random hives that sound like that. Mine go away after several days. When I first got one I thought it was like a spider bite or poison ivy but eventually realized they were hives. I get them in...
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    Hi Jaynie, I too get really upset when I get a...

    Hi Jaynie, I too get really upset when I get a new symptom from Lupus. I guess it's cause I wonder if it meansore really bad lupus complications are going to crop up.

    I am not in the UK but I can...
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    I have SLE but I do not have a sibling or parent...

    I have SLE but I do not have a sibling or parent with it.
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    Nonna, Maybe you can shut the bathroom door...

    Nonna,

    Maybe you can shut the bathroom door and take a long hot bath. I do that sometimes to get away from my family demands and I find it relaxing. I wish I could give you a hug. I could use one...
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    I am so thankful for the nurse angels I have...

    I am so thankful for the nurse angels I have encountered: the one who sat with me for hours helping learn how to breastfeed my daughter, the one who kissed me on the forehead when I started crying...
  8. Thread: Humpty Dumpty

    by Nicole
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    Hi Mrs K, The book that Tammy recommended is...

    Hi Mrs K,

    The book that Tammy recommended is excellent. I have referred to it (The Lupus Book by Daniel Wallace) repeatedly since I was diagnosed. Our local library has it so you may want to check...
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    Sam - Thanks for your reply. I also feel the heat...

    Sam - Thanks for your reply. I also feel the heat internally. It seems like I have a fever but never do. I notice the burning on my skin or in my tissues if I put pressure on it especially. I am not...
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    Is neuropathy progressive or can it calm down...

    Is neuropathy progressive or can it calm down with Lupus medications? I also have tingling/vibrating sensations in my legs. My rheumatologist said at the last appt that he suspected it was just nerve...
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    Feels like sunburn

    Hi everyone I have a new question for you. I have had Lupus for about a year and sometimes have a hard time articulating all my symptoms. I just realized the achy body feeling I have can best be...
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    My dermatologist found a melanoma on my ankle in...

    My dermatologist found a melanoma on my ankle in January. It was a small mole that had darkened somewhat. I was lucky to find it early but still needed a skin graft from my hip to replace the cancer...
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    Geraldine, Have you considered seeing a...

    Geraldine,

    Have you considered seeing a dermatologist for your psoriasis diagnosis? I have a rash on my forehead that flares with my lupus. I think the rashes can be quite hard to figure out. A...
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    Hi Geraldine, Welcome to our forum. I would...

    Hi Geraldine,

    Welcome to our forum. I would love to hear your symptoms. That is one thing I find very interesting. Though many cases of Lupus are different we can learn from others experiences...
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    Hi Kjell, I read this thread with interest...

    Hi Kjell,

    I read this thread with interest because I wonder the same thing. If we hear a hundred stories about what it was like for some people in the beginning maybe we would see a trend or find...
  16. Thread: Newly Diagnosed

    by Nicole
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    Hi Tammy Sue. I was recently diagnosed with Lupus...

    Hi Tammy Sue. I was recently diagnosed with Lupus and am 45. I know what you mean about Lupus stomping on your hopes and dreams. It sure is frustrating!

    I have read every book on our library's...
  17. Thread: Low stamina

    by Nicole
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    I felt so incredibly sick in the store I felt...

    I felt so incredibly sick in the store I felt like passing out. I never have and was able to sit for 20 minutes before my husband helped me to the car. I wonder what would have happened if I didn't...
  18. Thread: Low stamina

    by Nicole
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    Thanks Nonna. I had totally forgotten about UV...

    Thanks Nonna. I had totally forgotten about UV lights being an issue. They are such an invisible threat. I will keep that in mind. I had not walked that much in a long time either so I was thinking...
  19. Thread: Low stamina

    by Nicole
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    Low stamina

    I have had lupus symptoms for about a year and am still trying to figure things out. I went on a shopping trip today and felt good for about 15 minutes. Then I felt suddenly extremely ill and had to...
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    I have not been diagnosed with neuropathy but...

    I have not been diagnosed with neuropathy but have had weird symptoms. Once over the summer, I was wearing shorts and I felt water dripping over my leg. Of course there was none. I felt it more than...
  21. Thread: Surgery advice

    by Nicole
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    Thanks Sleepy in Seattle. That is a great...

    Thanks Sleepy in Seattle. That is a great reminder about the sulfa antibiotics. I plan to make it clear I have Lupus.

    I am really lucky. My husband is really supportive and will be with me. My...
  22. Thread: Surgery advice

    by Nicole
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    Thanks so much for the feedback Jmail. It is...

    Thanks so much for the feedback Jmail. It is reassuring to know minor surgery might not cause an issue. I am meeting with the surgeon on Monday. I think it is outpatient because it is at a plastic...
  23. Thread: Surgery advice

    by Nicole
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    Surgery advice

    My dermatologist found a melanoma on my ankle. I will have surgery including a skin graft in a couple of weeks. Is there anything I should think about regarding Lupus? I have heard surgery can cause...
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    Thanks everyone for responding. I guess I need to...

    Thanks everyone for responding. I guess I need to print out some research from valid sources to take to my GP so I can get him to run more than just the TSH. These autoimmune diseases are so darn...
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    Hashimoto's Question

    I have noticed several of you mention that you have Hashimoto's. My Rhuemy found two types of elevated antibodies against my thyroid at my first visit six months ago and diagnosed me with Hashi's...
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