Hi,
I am very keen to communicate with anyone who may have experience/knowledge of the above. Have a few issues but my main problem in pratical terms, is plaques & tiny calous type spots on both palms & all fingers;- worse on pads of fingertips.
Am seeing a Skin Specialist & have a great G.P. but still unclear on many aspects of Cutaneous vs Systemic Lupus & would appreciate a discussion with a Cutaneous Pt.
Thank you for your time
Kind Regards Kaz
I have tiny red painful spots on my finger tips but never knew what it was. Ive had them for almost a year.
Hello Kaz,
I have Cutaneous DLE/SLE and those red spots your having i have them also...not just on my hands but also my arms and legs when they break out, they're actually broken blood vessels, you need your Dermo or Rheumo to test you for vasculitis as it's mainly this which causes them.
My Dermo tested me on a certain named vasculitis as i get them on the edge of my nail at the top just under the skin and also short brown pieces in the nail which look like splinters of wood...the test came back negative at the time but he knows that lupus can give off false readings.
Now he's refering me to a new rheumo where furthur tests will be done.
All my love Terri xxx
Taa Much Terri, is there a point to a diagnoses? I mean will there be a treatment for (say) Vasculitis or is just part of The Cutaneous Lupus grab bag? If something can improve my hands I'll GO FOR IT! I'm hoping its a short term issue, but it's actually quite disabling at present. I spend most of my day sounding like the opening scene from the movie Four Weddings & a Funeral (everyones running late & expressing themselves in four letter words well, actually multiple repetitions of the same four letter word (;-).
Kaz
Tez_20 said:
Hello Kaz,
I have Cutaneous DLE/SLE and those red spots your having i have them also...not just on my hands but also my arms and legs when they break out, they're actually broken blood vessels, you need your Dermo or Rheumo to test you for vasculitis as it's mainly this which causes them.
My Dermo tested me on a certain named vasculitis as i get them on the edge of my nail at the top just under the skin and also short brown pieces in the nail which look like splinters of wood...the test came back negative at the time but he knows that lupus can give off false readings.
Now he's refering me to a new rheumo where furthur tests will be done.
All my love Terri xxx
Hello Kaz,
I've just looked at yur profile again...and saw what meds your on, why don't you speak to dermo or rheumo about Plaquenil as that's one excellent drug for skin issues mainly but it does treat joint issues besides plus it's not a steriod as your on prednisone already.
With my diagnosis i have psoriasis also and with the Lupus besides these skin disorders mimic or conditions, such as ringworm, tennis elbow etc, that's what was happening to me till i was fully dignosed.
Kaz it is important to be tested also on vasculitis as that can causes so many issues besides lesions and those lesions can spread and like i said plauqenil would help you in a large way and your specialist may find out what form you have, if you are suffering from it.
Have you ever been on steriod based creams to help you skin besides?...if not asking about them may help as they soon remove skin issues besides.
Love Terri xxx
Hey Terri,
have just updated my profile.
Started Plaquenil 200mg X 1 day 2 days ago increase to 400mg in 5 days time.
Advantan Fatty Ointment is current skin cream. Also using Paw Paw ointment several times a day for hands & lips.
Thanks Terri for your interest & suggestions. G.P. has today explained hands will get worse initially then improve (we hope) as new treatment plan evolves. Feel soooooo much better as hands were a bit of a scarey issue. After midnight here in Aust. Nite Nite & again thankyou.
Kaz
Kaz,
Thanks for letting me know...you'll be surprised how your hands will pick up when plaquenil finally kicks in it's usually 6mths before it works but i saw a difference at 3mths...i'm only back on it till i see the new rheumo but the best time not to feel any side affects off the drug is by taking it at 10 or 11pm at night, i took it through the day and was bad with it but someone i know suggested night time and the affects stopped and i've done the same since i've come back on it and just sweating.
I take 200mg daily they can't push no higher because of other meds i'm on and also through my organs.
Your GP sounds like he's got you well covered with cream also...i really hope the lot helps in one way or another.
Godbless Terri xxx