Diagnosed with vasculitis

I was diagnosed with APS 17 years ago. But as time goes by I am exhibiting more symptoms. I have been hospitalized 3 times in the past 2 years . I was on sick leave for 2 month. My hematologist recommended me to take coumadin and at times I have felt better but lately, I am not sure if the coumadin is working because I feel dizzy and my face is a little tingling. Recently I was diagnosed with vasculitis in my toes. My toes started getting purple and very painful. Most of the time I am very tire and my body aches and my eyes feel very dry and I feel like I have a cloud over my head. I can not concentrate at times.The last time I was hospitalized I developed pleulitis in my heart and lungs. My rehumatologist said that it happens to people who have lupus. My diagnosis is lupus anticougulant/connective tissue disorder/visculitis. I still manage to work full time but I know that in the near future I will have to apply for disability. Is there anybody in this forum from the USA who has apply for disability benefits and can tell me how the process was.

11 Replies

  • Hi there, plenty of people from USA on here, who will also have some more local knowledge for you, they will reply with details of who they see, and treatment offered accepted. I am pleased that you have an official diagnosis and some help! Also Lupus can cause extra layers of problems it sounds as if your rheumatologist is clued up; Do show them our website, it may be of interest to them: hughes-syndrome.org/

    Mary F x

  • Hi There

    As Mary says there are plenty of folks on here frome the USA, so I hope they make contact with you.

    I was on Warfarin for 10 years and then it no longer seemed to control my symptoms; some of which sound like yours. Prof Hughes put me back on Heparin and I feel so much better.

    Best wishes.


  • Hi Dave,

    Do you know if Heparin is the same as lovenox. When I became pregnant 10 years ago, my OBYN put me on lovenox shots. Lovenox is a blood thinner but does not affect the fetus like Warfarin.


  • Hi Lucy

    No, I don't know whether this is the case I take fragmin (Low Molecular Weight Heparin).

    Best wishes.


  • Lovenox and fragmin are types of LMWH or low molecular weight heparin.

    Some types are more widely used in different countries.

    Please watch the purple toes and not to scare you but to arm you with knowledge please look up purple toe syndrome.

    I'm in USA, what state are you i?

  • Hope you begin to feel better, and with the help from your doctors get a much better quality of life :-)


  • I was diagnosed with Central Nervus System Vasculitis (CNS Vasculitis) It caused a stroke in the occipital area of the brain. I went through mega doses of Prednisone (steroid) 80 mg./day with about 30 other prescriptions, that is not exaggerated. I spent 10 days as an inpatient getting diagnosed. I was 48 years old, about 125 lbs. when it started with a literal knock you to your knees headache. Off to the ER. They admitted me and the tests began. I don't think there was a test they did not perform on me. I had the camera through the carotid up to the brain. I had a brain biopsy but they did not get a brain vein specimen so it was all for naught. I had the camera through the artery in the leg up and into the heart area. I had an MRI/MRA in which they forgot about me and I had to crawl out from underneath it and yell at the tech who was supposed to be watching me (steroids make you mean) All total, I had well over 25 MRI/MRA,s in a relatively short amount of time. My weight climbed to 220 lbs. (I am almost 5' 2") from steroids. The gave me chemo. Unfortunately, the chemo agent they gave me has a minute amount of people who get bladder cancer from it, I was one of those people. The agent is called Cytoxan. It did put the CNS vasculitis in a state of acquiescence, which means "quiet" I think. I also had other diagnoses, but was not yet diagnosed with APS. I was disabled on the vasculitis diagnosis because they did not expect me to live past 2 years on the long side. I kept working as it was a very good way to block out pain and since I worked at the hospital it was very easy to get the attention I needed and then just go back to my office, shut the door and hide or work. Until I realized they were full of it and I had already lived past what they had predicted. I finally settled into the job I wanted, at the salary I wanted, with the benefits I wanted and even the stupid title I wanted so badly at the time, and my body went kaput! Done. Empty. Hard drive wiped clean. It's funny I could deal with CNS vasculitis, fibromyalgia, osteoarthristis, connective tissue disease, spondylolithesis of L4, L5 and S1, glaucoma, cataracts, extreme hypertension, diseases I forgot, but the big "C" word scared me beyond reason and still does. It returned 8 times within 90 days each time. I changed doctors. I had my one year anniversary in April of being in remission. But when I asked the urologist if I could bring a bottle of Crystol home to celebrate one year cancer free - he put his hands on my shoulders, gently pushed down to seat me, looked me square in the eye about 5 inches away and said softly and firmly, "This insidious disease could return if you were cancer free ten years! You will always, always have to check every six months for the rest of your life and you will be in the minority if it does not return as it has the highest return rate of all cancers". He gently pushed my jaw closed. Right now I need to have a camera inserted into the urethra and watch the inside of my bladder on a TV bedside and the urologist twists and turns the camera looking for the tiniest beginning of a neoplasm. Or worse, if cancer spread somewhere else. It's a painless test really, until you get to the results. Then it scares the heck out of me every time.

    So. That is the diagnoses that will probably be used for disability. Also during my original stroke, my memory was affected. That eliminates me from jury duty. It is important to speak with your doctor about all of your diagnoses because it is the combination of them that will probably disable you. Also, get on the computer to the Social Security office and find out approximately what your new income would be estimated at (so you are sure you can live on it) then decide if you are able to be disabled. Sometimes it is best if you let them fire you because you can't perform, sometimes not. You can still make a certain amount of money on disability. I think they just raised it this year. Maybe $12,000/yr. I'm not sure about that you will need to verify on the SS site.

    Well, China22, that is my story of being disabled on the diagnosis of CNS vasculitis/stroke. The social security system is changing faster than any normal person can keep up with the changes. Also, whether you are married or not has a portion to do with it. The SS office has pretty nice people who can help you get an idea of all the new changes and approximate what they can anticipate you will get. Just tell them you are trying to make adjustments now if it comes to the time you NEED to be disabled and you are adjusting your budget and would like an approximation so that if it comes to pass, you will have prepared and understand the process better. I found them very pleasant. Of course, I was on a lot of drugs. Good luck.

    Warm wishes


  • Hi Canary,

    I spoke to Social Security office and they said because I have minor children, they will be entitled to get social security benefits until they reach 18-19 years old. I am a little scare but I will wait until next time I get hospitalize to stop working. Right now my syptoms of vasculits in my toes have returned. I don't have an appointment to see my dertamologist who treated me the first time it happened until next month. the tips of my righ toes and the surrounding areas get purplelish and the pain is really bad. This past Thursday afternoon, I had to leave work early because I was feeling dizzy and I went home to rest. Lately, I am getting a lot of sensation of dizzyness. A sympton that I used to get one every 2 years. I am getting it more often. I don't have a social life and I have pretty much isolated myself because I am in pain and everything bothers me. I am so thankful that both my children are good kids and they understand what I am going through and they help me in everything they can to make my life easier. I have a 14 year old daughter an a 9 year old boy. I am a single mom, I have a very good job with the government and I am in my early 40's and to think that in the near future I will have to go on disability makes me sad. Thank you for your reply.


  • Hi Lucy

    I absolutely loved to work. It was where I received all my kudos, all my compliments, from my hair to my suit to my work. It was an absolutely separate life from my family and I was a different person when I was at work. But the very second I hit that revolving door, I was Mom. Actually, I can't even say that because I was chauffeur, tutor, school play attender, student teacher conferences, throw in a load of laundry, take one to ballet the other for baseball throw the laundry in the dryer, pick those kids up, husband fixes dinner, I clean the dinner mess, the children, the husband, the dog and the house before I slept. Then I would get up and do it all over again. I was happy at work. I was a robot at home with no help except the cooking. The only reason he cooked was because admittedly I am a horrible cook. I can't even eat my own cooking. But.....I do other things well.

    My life is completely different now. I am completely different now. My children are grown with lives of their own. My daughter is 29 and lives in Memphis, Tennessee and my son is 32, newly married, and they just bought a house only 15 minutes from us.

    I was very fortunate as the hospital I worked at let me work from home and e-mail my work in. They really gave me complete freedom to work whatever hours I wanted where ever I wanted. On the other hand, I enjoyed earning it! I really worked until I realized I wasn't doing my doctors justice. My mind wasn't as sharp, I could no longer walk into a department and know the program in a day. Things took me longer, things I knew. I decided I would rather go out on top. Let them say, "Gee, she was the best assistant we ever had", when I am gone. Instead of, "Wasn't it too bad so was so ill."

    Most work places will make accommodations for you, but you need to tell them your diagnosis or they don't have to. It also depends on the number of people they have working for them. I think under 10 employees or so they are not obligated by law -only morally. But if you like your job, you are probably good at it. So they will do amazing things to keep good people and there really is nothing you can't do from home and e-mail in. See what kind of accommodations can be made for you when you are ready to slow down.

    Frankly, I think you need a reassessment. With the kind of symptoms you are having I think you need to be re-analyzed. It sounds like you may have some additional autoimmune diseases. As an administrator on this site has taught me (Mary) Prof. Hughes believes aps runs in threes, usually a thyroid problem and sjogrens. (I may ot had spelled that right). See? There was a time that would have bothered me to no end if it was not perfect. Something misspelled on my work? Never! Now I couldn't care less. You change your priorities. Think long and hard. Try just cutting down your hours and get recheckjed. Perhaps, if it is a hypothyroid problem you are more tired and if you get it fixed, you may want to continue to work. In only 5 years your children will have lives of their own. You won't be receiving money for them then. Only your self. Remember, medicare only pays 80% and for people as ill as we are the bills do not stop and they only go up. It really adds up. Even if you have a supplemental policy. Think long and hard,,, buy get re-evaluated first. I think your body is telling you some thing.

    Warm wishes, Lucy and remember to be kind to yourself.


  • Hi Lucy:

    It just occurred to me that you said you had a government job. That might change the whole picture. The government has their own separate and distinct social security pool. They are like the railroad. They don't put into general social security in the first place. They have a private fund that essentially does the same thing, but separate from social security. I have no idea what the whys and wherefores are there. The government and the railroad and I believe the postal people have a separate fund similar to, but separate from social security. Go to human resources and ask for the website pathway to your benefits. Then ask them which specifics would apply to you. Is the father of your children alive? There could be additional benefits there if he works and is paying into social security. You should be getting child support till your children are out of college. They just changed that law, it used to be till age 18.

    I really think your next step should be re-evaluation by your doctors. Anything else is moot until you get definitive answers on your body. Your body doesn't hurt all the time for no reason. It's screaming for you to pay attention to it. Please, have another evaluation before you make any decision about giving up your position. Work is hard enough to find now days, particularly for single moms. What do the doctors say about disability? Perhaps, they would not disable you. Once you get your body squared away, you'll have some recent facts to work with and your body may feel much better. You may want to continue to work at least part time.

    Warm wishes, Lucy , and I hope you feel better.


  • Hi Canary,

    I have long term disability by my employer called Florida retirement system. I also get child support from the father of my children. Today I felt dizzy at work...I am feeling more dizzy and that scares me because the sensation of the feeling is bad. I will be calling my hematologist tomorrow to see if my INR is within range. I have been seeing the same doctors from the past 10 years who have treated my condition at UM (University of Miami school of Medicine). At the present time, I see the hematologist, reumatologist, dermatologist and the pulmonologist who I will be seeing in a few weeks from now. My breathing is not the same as before. At times, i feel strange when I breath and is not shortness of breath. My reumatologist ordered X rays, CT scan to see if I had inflamation in my lungs. Back in February I had pleulitis in my heart and lungs. This condition is common with people who have lupus. The dermatologist treated me the vasculitis in my toes but this condition has come back again. I was hospitalized back in February because I had a bad drug interaction with coumadin and the medication called danazol. The dermatologist prescribed it to treat the vasculitis. It went away for a couple of months but it's back again. I have a close relationship w/ my hematologist and reumatologist and I will talk to them to see if I apply for disability in the near future if I stand a chance to get approve. I was also thinking the next time I get hospitalize due to my condition, I will apply for disability. I also have a supplemental short term disability called aflac that will pay 80% of my salary for one year. I used it last time I was in the hospital for 1 month. I can use it anytime as long as my doctor(s) signs for it.

    Thank you again for the advice.

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