HenryEY. I have sometimes a rash livedo reticularis on my legs and arms. My thighs and upper arms are now painful from myalgia and they are also more weak. I have the malar rash right now because I’m waiting with a mask on now since 2 hours. I have a redness and heat on my left elbow and redness and heat on all my distal interphalanges of my fingers and toes since 3 days. I’m on my 6th day of Prednisone 25 mg today and the symptoms keep getting worse 🤦‍♀️. I think maybe the dosage of the Prednisone is not strong enough or maybe I would need Methylprednisolone in IV infusions, I don’t know 🤷‍♀️.

GenlancoYankowski. I never saw a real rheumatologist yet. I saw an internist at the rhumatology clinic but it’s a small clinic here and they treat more frequent rhumatologic diseases like rheumatoid arthritis, gout, psoriasis arthritis arthrosis or fibromyalgia. Lupus is not really something they are used to treat here because it’s very rare. I will see a real rheumatologist in 2 months in May and I am taking a lot of pictures to show him when I will go at my appointment.

HenryEY. Thanks for the information 🙏. I’m waiting at the ER right now, I hope the doctor will ask for those blood tests 🤞.

Mattsgal. It’s really weird, I have all sorts of things going on in the past days since I started Prednisone so I don’t know if it’s just a coincidence or if it is actually side effects from the Prednisone 🤦‍♀️. I think I feel worse than before I started it 🥺. The pain is really intense now almost always 8/10 and when it gets to 9/10, I need to take my CBD oil. The last time I took CBD oil was in January but I took some last Friday and tonight. The pain wakes me at night when I sleep almost each night 😩. I have more difficulty to function at home, can’t barely walk inside just from my room to the living room or bathroom. I can’t go walk outside now for sure. I can’t even do my physiotherapy exercices because the pain would then reach a 10/10 for sure! I managed to take a shower today but it was a real struggle. I have difficulty to wash my hair because my arms are too weak and I didn’t dry them because of the lack of strength. I’m in pajamas since 3 days. I’m waiting for the Prednisone to start working 🙄…well I’m not impressed at all right now 🤦‍♀️.

You are smart to document. What I am seeing in the pics look kind of what I get on my upper body.
I wish I knew more or how to help you.