I am relatively new to CNS Vasculitis diagno... - Vasculitis UK
I am relatively new to CNS Vasculitis diagnosis. Do the reddish purple spots on legs and arms mean I am flaring again?
Hi Tinabelle: I always have them. It is a matter of more or less purple spots, but they are always there. Over and in between I have livdo reticularis, also sometimes more and sometimes less. In any space left on my face, I have freckles. Both rashes are always more prominent after exercise and for me (I live in the State of Illinois, a very wintery State) if I am in extended cold. Suffice it to say, below 0 temperatures have been the normal this winter. We just had 4" of snow overnight. Pretty morning for about 5 minutes, till you realize YOU have to go out and shovel snow!
I don't think about the rashes and I don't try to cover them with make-up. I stay out of the sun and wear sun screen UV35. Remember the sun is sneaky. It'll get you in a car, it'll reflect off snow and get you. Face it. It's smarter than we are so put lots of sunscreen on. The sun is a wrinkle planter.
I wouldn't call it a " flare" although it may be part of a "flare". To me a flare is when a group of symptoms all react at the same time to overwhelm one to the point of diminishing most daily functions. Something like being hit over the head with a 2' x 4'. My flares usually include migraines. That's my perception of a flare, but another person's flares may be completely different. Your doctor should be aware of your rash if there is much change. I usually take a progressive photo (say one every morning till my doctor can see me) and look for herself. Could be important later. Can't hurt to document it.
Good luck Tinabelle. Don't let the name of this disease scare you. You'll get through it because the alternative is simply unacceptable. So educate yourself (it's the best medicine). Don't worry about what you don't have to. Do what you can mentally and physically to heal yourself.
Warm wishes,
CanaryDiamond10
Petechiae google.com/search?site=imgh... are a sign of cutaneous vasculitis , which does not necessarily include cerebral vasculitis , however petechiae do mean your vasculitis is active (flaring). en.wikipedia.org/wiki/Petec...
Thank you both for the information. My lesions are multiplying but I feel okay right now. I've spent the better half of the last year ( all but. 3 months) in the hospital or rehab because of this so it scares me. I just didn't know if it's the first sign of flares so I could "nip it in the bud" before it gets so bad I have to go to the hospital.
Another question is, do you have bad swelling in your legs and body? I've had it for about a year. Am on diuretics but the fluid retention, especially in my lower legs, is not going away. Is this normal? Any hints on how to get it to go down? Doctors just push the Lasix.
Hi Tinabelle. I have had the red/purple spots on thighs, buttocks, lower legs with painful red swelling in ankles and top of feet with raised painful bumps on top of feet and bottom of feet to were I couldn't walk. yes diuretics help but it won't go away. What will make it go away is Prednisone. Hospitals will tell you that you have Cellulitis and treat it with antibiotics and it will try to go away but come back after they are gone. I have been diagnosed with Vasculitis and had to tell the Doc's that they were wrong. I have Vaculitis cause from Wegener's granulamatosis. Have you ever had mouth sores/ulcers?
I have CSS and fluid retention with all the drugs, but I have found that, amazingly, reflexology on my feet seems to have an instant effect. I am now exploring the pressure points that I can do myself - there is loads of info on the internet. Hope this helps. Sandra
Dear Tinabelle (Like the name, by the way),
I can't be sure if your symptoms, are a flare or not-sorry- but please do have it kept an 'eye' on. I believe you are already doing so, certainly seems that way. My best advice is however not directly connected to whether, or not, you do have a 'flare' but is simply- TRY NOT TO WORRY TOO MUCH!!!!! Getting yourself in a 'tizzy/spin/kerfuffle/hotch-potch (you didn't know that I could spell all of those did you....Nor did I!!!) will only make any pre-existing conditions worse. Sorry if it sounds like I'm having a 'go' here- I'm NOT honestly- just trying to stop you worrying yourself too much.
I'm a little worried about your water retention, are your kidneys alright? Kind of specialist subject, to me, I was on dialysis- for four years- I had a transplant last July. Maybe worth checking, since you say , the diuretics aren't doing much. I really AM the 'bringer' of doom, and gloom, today, aren't I? Good job it's a nice day out there, isn't it? Happily and most importantly you, like all of us, still very much alive- so not all bad then. I am truly thankful for that, every single day- truly I am!
On that happier note I'll end now.
Very best wishes
AndrewT
Thank you so much AndrewT for the words of encouragement! I'm not too worried I'm just trying to figure out a pattern. Been diagnosed with SLE Lupus, CNS Vasculitis, Rheumatoid Arthritis and CIDP and osteoporosis (from high dose steroids) so sometimes a pattern is impossible.
My kidneys are doing great. I don't eat much salt either. So it's strange about the fluid retention from my knees down. Especially on the tops of my feet. I'm trying to walk more (had been bed bound for over a year) to get the fluid to move. It's helping a little but I thought it would have helped so much more. Could the really bad flare I had in August that almost killed me have permanently damaged my lymph vessels? Or is the swelling just part of Vasculitis? Wishing so much to be back to "normal!"
Thanks again AndrewT and hope you have a fabulous week!
Dear Tinabelle,
I don't know much about 'lymph vessels', other than roughly what they do, so can't advise further....Sorry! Sorry to hear that you were bed-bound for so long-glad that you are obviously 'up and about' again.
I'm also glad that you DIDN'T DIE, in August; I didn't die seventeen years ago either. I hope, and pray, that we both continue 'not to die' for some time yet!
I had a pleasant week, on the Isle of Wight, until home day- Friday- when I got a stomach bug; the 'works' (I won't elaborate further). Hopefully I've now 'turned a corner'- I hope so anyway! I'm seeing my consultant, at Addenbrooke's, on Monday, in any event. Something you might like to ponder......'What is normal'? (Just a thought).
I send you my best wishes, keep well (well as well as you can!)
AndrewT
