It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Immune Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-22-2010, 10:17 PM   #1
Senior Member
(male)
 
Join Date: May 2003
Location: Virginia
Posts: 208
dreamer54 HB Userdreamer54 HB User
Vasculitis Anyone ??

Recently been diagnosed with Vasculitis. Looking for others to communicate with since there`s not much available on the internet about this disease. If you have Vasculitis , and would like to compare "notes" please respond. Thank you.

 
Old 08-25-2010, 09:35 PM   #2
Newbie
(female)
 
Join Date: Aug 2010
Location: CA
Posts: 7
Julieb66 HB User
Re: Vasculitis Anyone ??

I have Takayasu's Arteritis. I was diagnosed July 1995. I would be glad to compare notes.

 
Sponsors Lightbulb
   
Old 08-26-2010, 06:55 AM   #3
Senior Member
(male)
 
Join Date: May 2003
Location: Virginia
Posts: 208
dreamer54 HB Userdreamer54 HB User
Re: Vasculitis Anyone ??

Hi Julie !

Thanks for responding . It`s amazing how many auto-immune diseases there are that are similar in nature and have the same treatment. My doctor never did give my Vasculitis a specific name, just used the broad term. Possibly he dosen`t even know, but as long as the drugs involved to treat me are correct, I really won`t care what type I have.

Basically, my symptoms right now are lightheadedness, totally numbness in my feet and ankles which make it so I cannot move the ankles or toes. I use a walker to get around, soon to "graduate" to using forearm crutches. The disease also took part of the vision in my rt. eye, doctor said the eye suffered a stroke and will not recover. I`m constantly tired and find myself slipping off into dreamland while watching TV. The majority of my pain is in my feet and I take pain pills when needed. Headaches I used to have are better now thank goodness.

My main concern is with my feet. I wonder if i`ll ever regain use of them . Presently, i`m on 40 mg of Prednisone( down from 80mg) and 100mg of Cytoxan which will be increased gradually from what i`m told. The Prednisone has caused problems in that my blood glucose readings are always high. It actually has caused " drug induced Diabetes " and I must monitor glucose levels and inject insulin on a regular basis. Prednisone has a reputation of causing problems and actually turning people into Dibetics who normally wouldn`t be however if my condition can be improved by using the Prednisone, I guess it`s a fair trade off.

I would be interested in hearing a little about your condition and problems. Actually, the doctors had at first thought I had Temporal Arteritis and removed my Temporal Artery for testing. Not sure if i`m better off having Vasculitis ,from my readings both diseases aren`t easy to cure.

Stan

 
Old 08-26-2010, 08:16 AM   #4
Newbie
(female)
 
Join Date: Aug 2010
Location: CA
Posts: 7
Julieb66 HB User
Re: Vasculitis Anyone ??

Stan,

I will go back to before I was diagnosed. The month before I got married (Dec 1996) I had a massive case of strep and mono. I was sick still when i got married (i was 20 at the time). A few months later i got erythema nodosum on both legs. After that was done and over with I was healthy. Had my son two years later. Was healthy except for a bad case of the flu. After my first child I had three miscarriages and finally had my second child 5 years after my first.

During my pregnancy with my second child they couldn't get my pulse in my left arm. They never looked into it. The nurse would always just go to my right arm. I am positive I had the TA when i was pregnant with my daughter but because I was pregnant It put the disease in "remission" for awhile. Three months after she was born i got UVeitis (inflammation in the eye). It was the worst thing I have ever gone through medically. I was so sick, was given the wrong prescription, trip to the ER, got shingles, gave my children chicken pox. It was a miserable time that seemed to go on forever.

I was pretty much sickly from the time I was diagnosed with UVeitis for the next 18 months. Had low grade fever, weight loss, night sweats, double vision, arm would go numb, feet were cold, pain in the left side of my neck...in general classic symptoms of an auto immune disease. We moved during this time from Lake Havasu City to Dallas. I didn't have a doctor and didn't think anything serious could be wrong with me. I was young and stupid.

I had lost a lot of weight. I weighed under 100 lbs and I am 5'7". I was having auras daily (like before you have a migraine). My mom, my two kids and I went on vacation to Nebraska (Im originally from Omaha). It was July 22, 1995 and my I was describing what an aura looked like to my mom. She was driving (thank God, I was suppose to drive that morning) to my aunts house. I had a stroke just as my mom was driving by a hospital. I don't remember much but my mom said the she could see the right side of my face was drooping even though I had sun glasses on.

I thought I was dying because every time I woke up another family member was in the ER. I'm talking my brother, aunts, uncles, grandma, cousins and my in-laws showed up from Tulsa. Once my cousin Lisa was bawling saying "She cant die, she is like a sister to me" We joke about it now but when someone has a stroke, they can hear everything people say. Don't talk about them dying in front them. My husband had to fly in from Dallas. I was in ICU for a few days and I was paralyzed for 24 hours on my right side (from the top of my head to the tip of my toes). I had every test you can imagine. My SED rate was 98. Three days later I had an angiogram and that is when I was diagnosed with TA.

After a week in the hospital I was sent on my way back home with 60 mg of prednisone and coumadin. They had set me up with a neurologist back home who I saw the day after I got back. He is a great doctor. He referred me to a rheumatologist who I saw until we had to move last year to California (which i hate). Two years after I was diagnosed I was having symptoms again. I was seeing a different rheum because of an insurance change. He told me I just had anorexia. I was so mad. I called my old rheum who told me to call my neurologist. He got me in the next day. Two days later I was in the hospital having stints. My arteries on my right side were closing (80-90% occluded). My rheum agreed to manage my medication for free since he wasn't on my insurance then he went above and beyond by getting on my insurance plan. My neurologist wanted to try IVIG so I was on that for a year. It was considered experimental for my disease but he got it covered under my insurance.

By this time they wanted to get me off prednisone so I started methotrexate. Methotrexate and pregnancy are a huge no no. Well I ended up pregnant. I won't bore you with an even longer story but I was told to abort. I refused and she is a perfectly healthy 11 year old today. I was put back on 20 mg of prednisone during my pregnancy but got off it totally after she was born. Fast forward to two years ago, July 22, 2008. Exactly 13 years from the day I had my stroke. My brother died from a methadone overdose. It was the hardest thing I have ever gone through. About a month after my brother died I had my 2nd bout of UVeitis. It took 15 years for it to rear it's ugly head again but I knew what it was immediately. I have been fighting it ever since. I have been UVeitis free for the last 6 months after having a shot in my eye (3rd shot I've had, the first I had the first time around). I went Tuesday and I have it back again. I caught it early though.

My rheumatologist thinks my TA is in remission (or burned out) and has been since I had my third child. My new rheumatologist agrees. I also have reactive arthritis which I was diagnosed with a few days after my 40th birthday. I haven't had too much in the way of pain with the arthritis except for the first flare. It was extremely painful the first time around. Everything is related, the TA, UVeitis and reactive arthritis. I am HLA B27 positive, it is a gene marker for auto immune diseases. I found out that I was HLA B27 positive when I was diagnosed with reactive arthritis.

Currectly I have no symptoms of my TA or reactive arthritis. My UVeitis is back but I caught it early. To recap my TA, my left carotid and subclavian arteries are 100% occluded (or closed). I have no pulse in my left neck or arm. Right side started to occlude so I have stints in my right carotid, subclavian and vertebreal arteries. My left vertebreal artery has reverse flow.

If you were to see me in real life you would never know i had anything wrong with me. I guess that is both a blessing and a curse. Hopefully you will be able to get your disease in remission.

Sorry this got so long.

Julie

 
Old 08-27-2010, 02:40 AM   #5
Senior Member
(male)
 
Join Date: May 2003
Location: Virginia
Posts: 208
dreamer54 HB Userdreamer54 HB User
Re: Vasculitis Anyone ??

Hi Julie,

Well, I certainly can`t come close to all you have been through. My doctor has told me several times in the past few months that he was surprised i`m still alive, you`re the one he should have told that to, no one person should have to endure all that pain and suffering and you must be one mighty strong and determined person in my opinion.

I think we may share a few symptoms but your illness seems a little different and a quite a bit more agressive then mine. I did experience headaches when I was first diagnosed however they have since subsided. The lightheadedness is a constant problem for me but i`m hoping that the high dose of Prednisone is the cause. Aside from my loss of vision, the only other Vascular problems caused by my illness are what it did to my legs, feet and ankles. I`ve had extreme swelling and loss of sensation since early May of this year which limits my walking. Presently, I go to Physical Therapy to keep up my strength and also to work on balance issues. I think the therapy helps however I question if this will actualy help me regain use of my feet. Even my doctor has no answer for that and says he has treated people worst then me that have fully recovered and also treated people better then me that have not. I worry that damage has already been done and will not be able to be reversed.

Anyway, I guess things could always be worst and I thank god that my illness hasn`t taken more from me. Hopefully the Cytoxan that i`m on now will help and i`ll see results soon. Thank you for taking the time to tell your story. I want to wish you lot`s of luck and good health in the future years to come. We can only pray that we`ll have no more flare ups after remission begins. Take care.

Stan

 
Old 01-17-2011, 12:00 AM   #6
Newbie
(male)
 
Join Date: Jan 2011
Location: Bangalore, India
Posts: 1
suboro HB User
Re: Vasculitis Anyone ??

hi my wife was recently diagnosed with having ANCA-p vasculitis. she had severe pain in her feet and palms and had foot drop and hand drop. she was treated with prednisone 1000 mg/ day for 6 days followed by immunosuppresent tablet called CellCept 1500 mg/day. the immunosuppression tablets did not work and she has been advised 6 pulses of intravenous cyclophosphmidesde 700mg has completed 5.after the 3 rd IV her WBC count dropped from 11000 to 5800 but again went up to 11000 after 4th I V which was disturbing. after the 3rd I V she had improved greatly but after 4th I V she appears to have more fatigue. she has neuropathy being addressed by physiotherapy incl nerve stimulation. i would like to know about others experiences reg the cyclophosphamide treatment and how to overcome neuropathy and how long it may take.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Vasculitis? Pleurisy? Is this very serious? kinikki Lupus 9 12-02-2010 06:53 PM
Vasculitis or MS or what? topsy123 Multiple Sclerosis 3 12-13-2007 02:03 AM
Lupus and Vasculitis emcreative Lupus 16 11-21-2007 10:41 PM
Vasculitis vasilady Immune Disorders 26 10-10-2007 02:58 PM
Vasculitis anyone?? outlaw79 Immune Disorders 9 12-11-2006 12:26 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



cvidmama (12), kelli1b (4), ladybud (3), markincleveland (3), AngelicBrat (2), luca689 (2), ltmccarty (2), SK59 (2), Harry (1), Deda (1)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (855), janewhite1 (823), Titchou (769), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (654), BlueSkies14 (610)



All times are GMT -7. The time now is 07:59 AM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!