Category Archives: Vasculitis

A life with An Invisible Illness.

Invisible illnesses are just as it sounds invisible, You can’t see them, no obvious symptoms to the naked eye.  That being said, living with a invisible illness is the hardest thing I have ever had to do.  Not only living with the daily symptoms, but living with the unknown.  Will I be able to attend the function on Monday?  Will I be able to drive to my Doctor’s appointment on Tuesday?  What if I get lost?  What if I have a attack?  What If I have a drop attack?  I always carry my medication with me and a bottle of water as if it were a security blanket.  Is it really going to help in this situation? No , but it makes me feel better.  I only will allow my self to drive 3 or so miles and I have to feel better than normal to drive, so its not on a regular basis, I have to have some one drive me places, which makes me feel bad.  My sensory system is in such overload, lights, patterns on carpets, wallpaper, crazy bright colors really bother me.  I can’t handle music even though I am deaf in one ear and going deaf in the other, it causes confusion in my brain.  A lot of people in one area cause confusion.  You loose friends and your co-workers or family members question your illness?  I have never actually wanted anyone to have my disease which is autoimmune disease, Vestibular dysfunction, deafness, fibromyalgsia, extreme fatigue.  But at the same time If they could experience it for one day, maybe they would understand.  Invisible illnesses are not easy to diagnose or treat and most are not curable, I use to hope this MRI is going to show a tumor that can be removed and I will have my life back and that is just not the case, I am meditating which can be a challenge in itself, with all the noise in my head and spinning, eye pain, ear pain.  It’s depressing, but I had to take a new approach to my disease and not let it define me, also had to think of this as a gift! Am I crazy?  Yes I look at this as a gift to understand what others are going through and trying to help them through there journey.  I know it sounds strange, Yes I wish I was healthy but until a miracle happens I can help others.  If any of you are dealing with this world, talk to me, I can try to help you if not support you in your journey.

Have a wonderful Saturday, Kelly

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What causes vasculitis?

What causes vasculitis?

The causes of most forms of vasculitis remain unknown. Infections are strongly suspected of playing a role in in forms such as the association of hepatitis B (a virus) and polyarteritis nodosa, and hepatitis C (another virus) and cryoglobulinemic vasculitis. Bacterial infections have been suspected of playing a possible role in granulomatosis with polyangiitis (GPA, formerly known as Wegener’s) which is the reason that some patients with GPA that is limited to the upper respiratory tract are treated only with an antibiotic, Bactrim (trimethoprim/sulfamethoxazole). A general theory that applies to many types of vasculitis is that the disease results from the occurrence of a particular infection in a person whose genes (and other factors) make him/her susceptible to developing vasculitis.

What is going to happen to me?

The course of vasculitis is often difficult to predict. Some types of vasculitis may occur only once and do not return. Other types are prone to recurrences. For all patients with vasculitis, it is essential to be evaluated by physicians who are experienced in the treatment of these diseases. Vasculitis is treatable, and many patients achieve remissions through treatment. It is important to balance the types of medications necessary to control the disease and the risk of side effects that those medicines often bring. A primary aim of several ongoing new studies in vasculitis is to find drugs that help maintain remission.

Is vasculitis curable?

Most forms of vasculitis are treatable if detected early enough, before substantial organ damage has occurred. While often effective, however, the treatments remain imperfect and require improvement. Further research is needed in all forms of vasculitis. Greater knowledge of these diseases will lead to better treatments and, some day, to cures.

Will my children or other family members get it?

Vasculitis is not contagious. One cannot acquire vasculitis from contact with a vasculitis patient. In addition, despite the fact that genes probably play a role in susceptibility to some forms of vasculitis, it is unusual for vasculitis to occur in more than one member of the same family. Thus, vasculitis is not a heritable disorder. All of these points illustrate the fact that the causes of vasculitis are complex. In all likelihood, patients develop vasculitis because of the simultaneous occurrence of multiple risk factors, most of which remain poorly understood.

Does diet affect vasculitis?

This is one of the most commonly-asked questions by patients with vasculitis. All patients want to do whatever is within their power to help treat their disease. Unfortunately, there is presently no evidence that a person’s diet affects susceptibility to vasculitis, or that consuming or avoiding certain foods or beverages affects the course of the disease. In general, we advocate eating a balanced healthy diet rich in protein and vegetables. Avoidance of excessive empty calories, processed foods, and sugars may be very important, particularly in patients on steroids who are at risk for weight gain.

Will my vasculitis return?

After patients achieve remission from their vasculitis, it is logical for them to wonder if their disease will ever return. The answer, which is often difficult to give with certainty, depends in large part on the patient’s specific type of vasculitis. For example, some types of vasculitis, such as Henoch-Schönlein purpura (HSP) or vasculitis caused by a medication, are often self-limited and resolve on their own. Other forms of vasculitis (e.g., Buerger’s disease, a disease strongly associated with cigarette smoking) resolve with institution of the definitive treatment: smoking cessation.

However,  other forms of vasculitis behave less predictably and never come back in some patients but recur frequently in others. Granulomatosis with polyangiitis (Wegener’s), giant cell arteritis, Takayasu arteritis, microscopic polyangiitis, and many other types of vasculitis fall into the category of diseases that have periods of quiescence and periods of flare. Disease flares in vasculitis can be mild (rash, minor joint pains) or severe (renal failure, skin ulcers). Flares may occur if medications are discontinued or dosage is lower. Flare may occur in the context of infection. Often the reason for disease flare is unknown.

At the present time, the ability of doctors to predict who will suffer disease flares and who will maintain in long-term remissions (or be cured) needs refinement. Progress in this area will come through research.

How should I guard against the occurrence of a disease flare?

We believe that several points are worth keeping in mind:

First, the symptoms of flares are usually very similar those experienced at the onset of disease. If headaches signaled the beginning of giant cell arteritis, then the recurrence of headaches may indicate a disease flare. If leg ulcers began as painful red lumps on the leg the first time, then the return of painful red lumps may mean that vasculitis is back. Patients must become experts about their own manifestations of vasculitis so that they can recognize them immediately, consult their doctors, and begin appropriate treatment before serious damage occurs.

Second, we believe that patients truly know and understand their own bodies. It is important to discuss new or changing symptoms with your physicians. Together, patients and physicians can determine if new symptoms truly represent a vasculitis flare or if the cause is something equally as likely (medication side effect, infection, or other common medical issues).

Finally, because vasculitis treatments require careful monitoring by doctors, patients should discuss any changes in treatment with their physicians. Increasing or decreasing medications without consulting a physician may lead to trouble.

Why do I have to have bloodwork checked frequently?

Blood tests are helpful to monitor for the return of vasculitis by keeping a watchful eye on important parameters such as kidney function, liver tests, and markers of inflammation (ESR and CRP). Blood tests are also very important to ensure that medications are not causing any side effects such as liver irritation or low blood counts.

How often should my blood be checked?

This depends on the specific medicine or medicines that you take. Patients on cyclophosphamide (Cytoxan) should have their counts checked every 2 weeks. Patients on most other kinds of medications used to treat vasculitis (Methotrexate, Azathioprine) usually only need to have their blood work checked monthly. If some laboratory tests are abnormal or nearly so, then more frequent monitoring may be required.

What type of tests do we check?

Regardless of the type of vasculitis and the exact type of medication that a patient takes, similar types of tests are monitored. These tests are:

1) a complete blood count;
2) tests of kidney function including a urinalysis; and
3) liver function tests.

The table below outlines the importance behind checking each of these tests.

Type of Test What should be checked Why?
Complete Blood Count (“CBC”)
  • White blood cells (WBC)
  • Platelets
  • Hematocrit
  • Low WBC count may lead to infections.
  • Low platelets may cause bleeding.
  • Low hematocrit means insufficient oxygen-carrying capacity of the blood.
Kidney Function
  • Creatinine
  • Blood Urea Nitrogen (BUN)
  • High creatinine and BUN indicate that the kidneys are not performing their blood-cleansing function properly.
Urinalysis
  • Protein Level
  • Red Blood Cells
  • Normal urinalyses have no protein and no blood.
  • The presence of protein and/or blood in the urine may indicate active vasculitis in the kidneys (or damage to the bladder from cyclophosphamide).
Liver Function
  • Albumin
  • Aspartate aminotransferase(AST)
  • Alanine aminotransferase (ALT)
  • Often a good indication of overall health.
  • Elevated AST/ALT levels indicate inflammation in the liver (usually
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