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Life With Lupus

Please tell me if you've had this

Skin tenderness on right abdominal back and front. Groin skin tenderness on right groin lymph node. Feet unable to hold body up but not do to not enough muscle strength. Happens in cold weather or I’m on my legs to much?? Happens sporadically. I’m scared. This has never happened to me before. I’m losing the ability to walk

Hello there. Are you sure you have only SLE and not fibromyalgia? I happen to have bouts of tenderness. It comes and goes as the fibro fluctuates. I have both SLE and fibromyalgia and according to my rheumy the tenderness is due to fibro. Its so painfully tender at time that even mild brushing by cloth hurts. Fibro effects muscles, probably why your ability to walk is getting affected. Do not panic and see your rheumatologist.
With warm hugs. Stay strong.

Thanks I was diagnosed with that one time by rhuemy I didn’t like… but prednisone is helping like most people that get inflamed which I used to I get very constricted and the reynauds meds cause me inflammation. It’s almost like my body is closing up to stop the inflammation? Thanks I’ll discuss that with my new rhuemy. Any meds that helped you. The brush burn went away 2 days after I had an attack. I took 40 then 60 then 20 of prednisone im on now cause my doc doesnt want me going down that road again. Me neither with the acne. What meds are u on??? Did they help I found a good one for pain called kratom ( its a legal opiod) you have to get it from right source though.

i take milza 50 twice a day for it.

How long have you had lupus?? I’ve had it now for 8 years and usually around this time is when I start to ache as soon as the sun goes down especially if it is a cold day

My dr has me on Acthar hp gel twice a week and that replaces all prednisone I haven’t been on prednisone for 3 years now and als

3 years now and also on benlysta and I’ve been really good the Acthar is very expensive but there groups that helps with that. A 2.5 week supply of Acthar $35.000 so $70.000 a month plus the $5000.00 benlysta if u have ins then ask your dr about that

Wow I get really sick when the sun goes down too! I thought I was crazy!

I will ask het about these drugs they’ve really helped you ?!

Yeah it has i don’t care for needles but the 2 injections 2x a week and a hour infusion once a month to replace the 60mg of pred

On a scan one to ten go much?.. also what do they say about the getting six at night thing? Do u have possible stills disease like random attacks