Baseline_Tests

SUGGESTED BASELINE TESTS AND RECORDS FOR VASCULITIC PATIENTS
OR THOSE SUSPECTED OF HAVING SYSTEMIC VASCULITIS

(Compiled by a vasculitis patient whit NO medical training and not necessarily complete nor accurate) Last update 22 December 2008

See the Johns Hopkins web page on diagnosing vasculitis: http://vasculitis.med.jhu.edu/whatis/diagnosis.html

BASELINE TESTS

Baseline testing gives the doctors records to which they can compare later test results to determine if vasculitis is active or if the disease is regressing. Baseline tests can also help your physician determine which organs are involved and what further testing might be prudent.
Some of the tests will have been done earlier while seeking a diagnosis. Ask your physician about tests listed below that have not already been done.
Prior tests that returned abnormal results should perhaps be repeated.
See below "RECORDS" for information on receiving and retaining test results and exam results.

NOTE: Be sure to arrange with your medical laboratory that you expect to receive a copies of reports mailed directly to your home address. You should similarly request written reports from physicians such as radiologists and neurologists be mailed to you directly as you may need these in the future, perhaps suddenly, if you have to consult with a new physician.

Some of the baseline tests suggested for systemic vasculitis patient

Blood tests must include Complete Blood Count, high-sensitivity CRP, ESR, ANA, anti-GBM, and alpha-1 antitrypsin level
ANCA and Capture ELISA for anti-PR3 and anti-MPO.

See http://www.ifcc.org/index.php?option=com_content&task=view&id=346&Itemid=31

Click here to download an authoritative file on testing and interpretation of ANCA (.pdf file requires Adobe Acrobat Reader)

Urinalysis including microscopic.
A cardiac work-up (ultrasound, angiogram, mri, etc..

A significant percentage of vasculitis patients have silent heart damage.

A CT scan of the lungs.

(Lung damage can be “silent” until after serious damage and x-rays don't always have enough detail).

CT scan and endoscopic exam of the sinuses if any symptoms of nasal/sinus involvement.
If pain when urinating, or blood or protein in urine, a cystoscopy of the bladder can be considered.
A baseline hearing test, especially if cyclophosphamide is prescribed.
Balance tests if there is ear involvement or balance problems.
An angiogram is indicated if arteries and large vessels are involved or to initially help to diagnose.
A baseline MRI of the brain if any symptoms suggestive of central nervous system involvement.

If the patient experiences dizziness, the MRI of the brain should include the side views an otoneurologist needs.
It is important to order the correct number of "slices" in the MRI side views that an otoneurologist requires.
A digital subtraction MRI Angiogram may be useful in detecting vessel abnormalities.

If a glucocorticoid such as prednisone is to be prescribed, a baseline bone density scan (DEXA). A complete eye examination by an ophthalmologist.

If possible, one specializing in autoimmune diseases of the eye.

Patients with gastro-intestinal symptoms may need an entire G/I workup.

As many as 25 to 50 biopsies may be required to identify vasculitis involvement in the G/I tract.

If evidence of poor blood flow in any organ or limb, angiograms and/or blood flow tests may be prudent.
An examination of the oral cavity by a dentist.
An endoscopic and/or an MRI may be needed if cartilage damage is suspected in trachea or esophogus.
A test for Alpha-1 antitrypsin deficiency is required for vasculitis patients.

Click here to see information on WG and AATD.

Suspected vasculitis patients should be tested for hypothyroidism.
If the patient has not had a tuberculosis test, such should be done before administering immune suppressing medications.
A 2005 study concluded that presence of the anti-phospholipid syndrome (APS) confers an increased risk of damage in patients with systemic vasculitis.

Testing for APS is warranted in the diagnostic work-up of systemic vasculitis.

Persons with high eosinophil counts or who fit the profile for Churg-Strauss should have the level of Eosinophil Cationic Proteins measured.

The ECP test is a blood test for eosinophilic cationic protein. These cationic proteins are among the toxic granules that eosinophils release when they are activated.

Special Precautions for Eye Care while on Corticosteroids (Prednisone and Similar)

If possible, see an ophthamologist experience with autoimmune diseases of the eye.

An optometrist does not have the requisite training to identify treat autoimmune disease of the eye though they may identify the presence of inflammation.
Prednisone in high doses can cause increase in eye pressure leading to glaucoma.

A baseline eye checkup should be followed up with eye pressure checks every three months.
An eye pressure of 21 should be watched carefully so be sure ask what the pressures were.
Also schedule the next appointment before leaving the office.
Ask for a printout of the ophthalmalogist's report to be mailed to you for your home medical file.
On every visit, request the report be sent to all your other physicians.

RECORDS

Keep radiograph records (x-rays, CT scans, MRI scans, Ultrasound scans)

Some hospitals and imaging labs only keep old hard copy of CT scan, MRIs and other tests for five years before destroying them.

Ask your lab how their images are stored (digtally or in hard copy) and how long they are kept before they are destroyed.
If there is a possibility that baseline imaging studies will be destroyed, get copies of them to keep at home.
It may be possible to get CD disks of digitally stored images. Film copies and/or CDs may be available for a fee.

Some specialists like neurologists feel that MRIs and other imaging studies that are more than 2 years old are not very helpful.

Even so, those provide a basis for comparison to future radiograph results; so do get copies of all radiographs if you can.

Keep records of medical information – a personal history:

List all medications taken every day with dose and frequency.
List all supplements taken daily and weekly.
List all known allergies, including drug allergies.
List all known drug interactions that you should watch for.

For example, cannot take Erythromycin while on Zocor, cannot take magnesium antacids while on Cellcept, etc.

Update this personal history any time anything changes -- a doctor's name and address or the dose of a drug, new or discontinued drugs, and new allergies, etc.
Keep a copy of your up-to-date case history and the last 90 days of lab reports in a Medical Emergency File to give to ambulance or ER personnel whenever their service is needed.
Carry an abbreviated medical history with you at all times and keep a copy of it in your car(s) glove compartment(s). It should include

Your name and address.
Names, addresses and phone numbers of all your physicians and ophthalmologist/opteometrists
Your diagnosis, for example P-ANCA positive systemic PAN, Microscopic Polyangiitis, etc.
Date of diagnosis, location where diagnosed, name of diagnosing physician.
Organs known to be affected by neuropathy, blood clots, lesions, etc.
Date treatment started and what it was for example, IV Cytoxan (dose) every 30 days with oral prednisone (dosage) daily since (date).
Date changes were made in medications and what changes were made.

For example, Prednisone dose lowered to (mg) per day on (date).

Other chronic health problems (Arthritis, Thyroiditis, etc.)

Learn where local hospitals have their after-hours clinics.

Sometimes it is faster to go to a hospital after hours clinic than to an emergency room depending on the nature of the emergency.
<>Ask your doctors under what circumstances going to an after-hours clinic associated with a hospital would be acceptable versus those circumstances in which you should go to a hospital emergency care center instead.

DRUGS AND SUPPLEMENTS

Patients taking a glucocorticoid such as Prednisone or similar for more than a brief period:

Ask your physician about taking Alenrdonate or similar drugs that enhance bone growth.
Ask also about taking 1200-1500 mg/day of calcium supplement, and 400 units of vitamin D every day when the corticosteroid is started.
Recent (2008) studies indicate many living outside tropical or sub-tropical areas may receive insufficient sunlight and may require more than 400 units of vitamin D3 to raise the blood serum level to within the desired range.
Corticosteroids such as Prednisone, oral immunosuppressives such as Cytoxan and bi-phosphonates such as Alendronate can all cause stomach problems.

Report to your physician any stomach or gastro-intestinal problems should they occur.
Physicians may prescribe an acid suppressor like Prilosec, Aciphex, Nexium, Protonix, etc., for patients with stomach problems from the above or other drugs.

Patients with other rheumatoid conditions might ask their physician about taking glucosamine-chondratin.

Ask your physician about vitamin E supplements

Too large a dose may activate the immune system at a time when suppression is needed.

Do not take any supplements without your doctor's approval.

Especially don’t take supplements that contain sulphur such as MSM if you are allergic to sulfa drugs such as Bactrim.

Ask your physician if dosages should be adjusted for age, weight, and sex.

SUGGEASTED DIAGNOSTIC TESTS TO DETERMINE IF THE DISEASE HAS BECOME MORE ACTIVE

Erythrocyte Sedimentation Rate (ESR, SED)
High Sensitivity C-Reactive Protein (CRP)
Complete Blood Count (CBC)
Urine Creatinine

(NOTE: It is possible to have kidney damage and yet have the urine creatinine be in the normal range.
Urine microscopic, but must be done immediately as casts may disolve quickly

Selected antibody tests such as ANA, ANCA, anti-PR3, anti-MPO, RF, antiphospholipid, etc.
Angiogram, perhaps enhanced by use of Gallium or a gadolinium compound.

The latter may be contra-indicated with impaired kidney function.

Lung and upper airway imaging by CT scan or MRI.