Just told that I have Vasculitis on my feet...would LOVE extra advice..

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Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 118
   Posted 11/10/2009 6:36 PM (GMT -6)   
Hi Everyone, please let me say that as I read the posts from all of you I am so touched by how you care for one another. It can be a scary road to walk down when you don't have people to talk with about your condition..I appreciate any help that I can get. Sometimes, ok, well quite often, I leave the doc's office wondering what they're thinking and wishing that I could have more answers...that's why I'm asking you wonderful people:)

I went to my GP today complaining of painful sores on my big toes, and a couple little ones. They look dark purple/black in color and really hurt to walk on..I have to be careful with the way I step. In one spot it's blistered up..it's not horribly bad, as it's small in the scheme of things, but I'd love some extra advice/help from anyone..I am just learning what vasculitis actually means..I don't know if it's a sign of things to come either.

I've been told by my GP to go buy the warmest wooly socks, warmer shoes/boots than most people, and perhaps some warm down booties to wear around the house. That's about it. Got any other tips for me? Can anyone tell me what this means to me? Thanks.

-Ellie




<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2563
   Posted 11/10/2009 9:25 PM (GMT -6)   
Ellie,

Vasculitis is inflammation of your blood vessels. I have no personal experience with it, but suggest you go to the following website and get some info about it. Hope someone else here can help more than I.

www.mayoclinic.com/health/vasculitis/DS00513

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/11/2009 4:05 AM (GMT 0)   
i wish i couldnt share your pain but i do... if you look online or anywhere you can find diabetic socks they are super warm..i have a pair of boots that are furry lined so it keep me extra warm..mgloves or mittens and a hat.. i get cold all over.. your sores just please please take care of them.. i wish someone had given me the advice to make sure there healing correctly..try warm salt water soaks for 10 minutes then take it out and put on warm socks..there is something you can buy called hot hands walgreens sells them and insert them in your socks and gloves and they stay warm for 10 hours..if you have any other questions feel free to ask me.. i have had this for 3 years.. but i also have raynauds too which i believe is the same thing.. i have been told i have both so i dont know if its the same or not..

super important advice just take care of those sores before they get too bad...

good luck
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/10/2009 10:07 PM (GMT -6)   
the website she referred you to is great theres a part in there that say "The shortage of blood can result in organ and tissue damage, even death. " death as in tissue not actual death of a person just wanted to make sure you understood that
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 11/10/2009 11:26 PM (GMT -6)   
Hi Ellie,
 
I have systemic vasculitis (head to tow). It's under control now thanks to prednisone, but I also have to keep my feet and hands nice and warm.  I also have Raynaud's Phenomenon.  Do you?
 
What about a pair of those Ugg Boots?  Apparently, you can wear them without socks even in the winter! So you can imagine what they'd be like with wooly socks in them!
 
As long as you're treating the vasculitis with the right meds, you'll do great. 
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 118
   Posted 11/11/2009 3:13 PM (GMT -6)   
Thank-you everyone for your tips, and info on it...I have been told that I have Raynaud's as well..in both my hands and feet..I've never had my feet this cold before though..seems that they're getting colder this season than ever before. I've felt like my body's thermostat has been "off". Sometimes just having a drink of 1/2 cup of milk can make me cold all over..we'll see what the warm woolies and the like will do.

Pat-Thanks for the website link. I've gone to it, and will refer to it in the future..it has valuable info..

Ginny - As mentioned above, I do have Raynaud's..I am wondering, as I'm just on Plaquenil, did you have to get put on Prednisone to help the vasculitis, or is that only for systemic vasculitis? I bet that I have to get further tests to find out exactly what's causing it. I'm waiting to hear back from my rheumy..probably tomorrow (Thurs)

Amy - I loved your advice about soaking my feet...but what would the salt water do? If I don't, doesn't the black painful spots go away on their own? Or is a combo of the meds/salt that will help? My GP never said anything about further treatment...just to email my rheumy, and then wear lots of warmer stuff on my feet..gave me some possibilities as to what to wear..I wonder too if the Raynaud's and vaculitis are separate things..I think they are..as one is vessel inflammation in the feet (for my case) and the other is simply put flowing away from my feet or hands...anyways, what do I know? This is all new to me..just trying to figure it out like the rest of you...to hear that you've had it for 3 yrs, I would love to gain from your wisdom in living it, as well as yours Ginny..I don't know if it's systemic or not yet. Don't know exactly what's going on:( Amy, I have a thing called "click it" for my hand..I hadn't considered wearing it inside my sock..good idea..maybe I should get a second for my other foot...hmmm...

Would love to hear back from any of you with further input. Thanks so much.

-Ellie




<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


rahrah
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/12/2009 8:22 PM (GMT -6)   
I was diagnosed with vasculitis over a year ago.  Not to scare you but treat it with the greatest of care and caution.  My sores became open wounds and started to tunnel.  The best doctor to see is a vascular doctor and one hopefully at a wound care center.  The last year I have had 6 surgeries 5 hospital stays and 3 rehab facility stays.  So please take care of those places.

Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 118
   Posted 11/13/2009 4:31 PM (GMT -6)   
Didn't scare me Rahrah..I'm just thankful for any tips..also to hear of other people's experiences..this is all new to me.
May I ask, but did your first bit of vasculitis start out relatively small, and then over a course of time get worse?  Or was it pretty bad from the get-go?  I'm sorry to hear of your difficulties with it...I hope that my feet heal and I see no more of this problem..but I really don't fully understand how bad this could get for me.  I don't even know if now that this has happened it'll be a re-occuring issue for me.  I'm going to treat my feet as good as I can with all the help and advice that you and everyone else has given me.  They're happy and cozy now in near warm plush slippers, and plush warm winter boots. My issues don't sound like anything as near worse as yours.  But I thank-you again for the warnings.  I heed all them as best I can.  Thanks again.
 
-Ellie




<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


rahrah
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/13/2009 8:29 PM (GMT -6)   
Just keep them from opening up thqt was when you have to pay attention nono .  Treat them wth great tenderness.  I will be glad to answer any questions you have turn .

Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 118
   Posted 11/14/2009 1:15 AM (GMT -6)   
This might seem like a silly question, but do I need to put bandaids on them? Or is just washing my feet every day and then putting clean socks on going to do the trick?




<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


rahrah
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/16/2009 12:17 PM (GMT -6)   
Only if they are open and if they are open you need to see a doctor. cool
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