Hello Kaz,
Thank you for updating we all on how you are and i'm pleased about your Photosensivity being better in doors...outside will always be a different matter, as it it for me with my eyes besides skin.
Well best of luck with the imuran and i hope no side affects occur for you.
Kaz the swelling does come off the joints with your Lupus and my knees get affected as well as the hands and if RA is involved it's even more painful and worse...try to not put to much pressure on, take it gradually.
Well how some issues are easing up sounds to me like you was in a flare and your hair can come out with Lupus besides taking meds...my heads skinned low through it because when i've grown it, loads as dropped out the first time i had bald patches on my head.
I'd definitely say a chronic combined flare was going on and the meds are helping you with what you say about your fingers nd hands besides but it's always best to keep nails short anyway.
Take tomorrow steady Kaz and don't get over doing things because of your knee also and your know fraud and don't get thinking that way because we're here to truly support one another and i have cutaneous DLE/SLE and just cope with your issues until your find out more when you see your rheumo.
Very nice concerning you movie and at least your getting out.
Do takecare Kaz and all my love Terri xxx
Kaz said:
Hi all, I am doing just fine as far as I can figure. Week two home from Hospital today. Photosensivity restrictions eased a little one week now. i.e. I dont have to wear barrier clothing in the house just Sunscreen & avoid the shadow line & only fluros when req'd. Outside its still the full circus.
Prednisilone 50mg Imuran 50mg. NO side effects from Imuran (that I have noticed).
Wrenched my R knee badly (or so I thought), woke up with massive swelling & non weight bearing & knee failing. Physio suggested it was Lupus joint swelling! It hadn't occured to me. Who knows? Ultrasound & ice pacs are helping, can now bear weight if placement on ground is impeccable (& if I hold my eyebrows just right). Swelling looks to be going down so fingers XX.
ALL lesions are flat, pink & fading!!! I really would not have believed it possible 10 days ago. Hair is thinning but not falling in clumps & no scars in scalp. I hope its more 'body shock' rather than meds.
Skin all over, waxy & dry & papery & no fingerprints! Hands full function back, but care needed with finger pads, seem to nick & cut them easily. Nails may be looking swollen & inflamed somehow. Not 100% sure have taken pix for comparision next week. Scalp all healed as are ears & mouth.
Thoughts seem to be coherent again & I'm not bursting into tears right left & centre quite so much. "Look a puppy, thats soooooo cute blub blub blub....." honestly its humiliating at times. I have more get up & go I can potter about for a few hrs now (up from 30 mins). Tomorrow will be a 'test' ehh?
I now officially feel like a fraud for having people concerned, It really seems like make believe that I was soooo messed up for so (26 weeks) long. Last Blood work used the word 'systemic' for the first time (as opposed to Cuteanous). NOT thinking about it for 3 more weeks till I see Specialist again.
Going to a movie tomorrow with my Book Club Pals (just like a real girl). Physio made me promise to get up 3 times during movie & move about!! It will be O.K. its a beach side boutique baby cinema we'll most likely be the only ones there.
Thanks for your query. I really do appreciate it greatly. Ciao for now (almost better) Kaz xox
hope this finds everyone on the site having a good few hrs.