UCLA Vasculitis Conference personal impressions October 2014 — part 2
UCLA Vasculitis Patient Conference
UCLA Medical Center, Santa Monica
October 18, 2014
Disclaimer: This is strictly what I took away from the conference. These are not direct quotes unless in “quotation marks”. I may have taken away something different from other attendees since my focus was on CSS and I have 8 years of experience living with this chronic autoimmune illness. Also realize my dry sarcasm may shine through at times Also remember this is my review of the conference…. Not a transcription of it.
Talk #3 – Current advances in the diagnostic imaging for Vasculitis. CAT scan, MRI, PET? Which to choose? By Dr Kenneth J. Warrington (Mayo Clinic)
Why we use imaging?
- With the rapidly progressing organ damage associated with Vasculitis we can use imaging to see vessel narrowing, lack of blood supply and damage of an organ. In the smaller vessels we usually need a biopsy but imaging can help us see the effects… the aftermath of damage in blood vessels.
- To look for complications, pictures can help us better understand what is going on.
CT aka CAT Scans
- Imaging in sections, creates a 3D picture
- If we use dye it is called a CT angiogram which is used to look at vessels
- CT scans can show inflammation in sinus. Nodules, spots and infiltrates in the lungs.
(OK, I have to admit it… By now my bladder was bursting… I HAD to take a bathroom break J . I did wake up at 4am and was loaded with coffee by now and by 2 hours of talks I had to break free to find a restroom so I missed the next 2-4 minutes of the talk…. Sorry, but bladder talks and I take the walk so I missed the rest of the CT scan talk and part of the MRI/ MRA talk)
MRI is without contrast / MRA is with contrast
- MRI can show thickening of walls of the arteries
- MRA can show inflammation in the walls of the blood vessels
Uses radioactive glucose and are actually PET / CT scan combo
- VERY expensive
- Pet scan can show source of inflammation
- Pet scan can show joint inflammation
- Pet scan can be used to look at lung nodules and see if they are cancer vs nodules vs scaring
- Pet scan may be used with a patient has very high ESR and CRP and doctors can’t find the source of inflammation through other diagnostic tests and imaging.
Dr Warrington then opened up the floor to questions on his talk or ANYTHING we wanted to know about Vasculitis. Many questions were asked and answered but these two answers stood out for me…
- In ANA related Vasculitis sometimes the type does not really matter. The treatment is very similar. We like to narrow down what kind of Vasculitis patients have because it helps us to know what to watch out for and what the future prognosis may be.
- There is no answer to the special diet question, if it is helpful, harmful, or just doesn’t matter… No research has shown that a change of diet will make a difference in Vasculitis (unless you have an allergy or other medical condition).
LUNCH TIME!!!!! YEAH!!!!
UCLA and the Vasculitis Foundation put out a very nice spread of cakes… There was also fruit, granola, coffee, veggies and dip. It was very nice but I was VERY hungry by this time and really needed some protein (and was trying to avoid the very tasty looking sweet stuff) so I snuck off to the Cafeteria for some meatballs and sauce to hold me over. Many of the participants ate outside while a few of us stayed in the Cafeteria. Conversations were wonderful. I hung out with some Wegner’s patients and we discussed many topics both illness related and just fun stuff too. It was very enjoyable.
Ok back to our normally scheduled program….
Talk #4 – My doctor says my Vasculitis in in “remission”; so why do I still feel unwell? The current state of damage and disease activity assessment in Vasculitis. Strategies to minimalize disease and treatment associated morbidities. By Dr Kenneth J. Warrington (Mayo Clinic)
(OK friends.. truth be told this was the ONE talk… that made me want to attend this conference. I expected a lot and was hoping for answers. Although I did not get ‘the answer’ I finally got more understanding and that was worth its’ weight in gold. I took 4 pages of notes on just this topic to pass on to all my readers since I know this is a ‘hot’ topic. I really hope the VF continues this topic at future conferences, since these are the type of Face Book questions I see the most with the most conflicting answers if answers are available at all. I think as Vasculitis Patients and CSS for me; remission is put out there as ‘ light at the end of the tunnel’ when you are first diagnosed but with time reality sets in and you realize that remission does not mean a reset… does not mean you get to go back and do everything you were doing before you were diagnosed with Vasculitis. I think we tend to have an unrealistic view of remission, we think it is like cancer remission but it is not. Vasculitis is a chronic autoimmune condition and remission may really need to be renamed in this case to stop patients from unrealistic expectations. Ok, off my soapbox and onto the show)
Key takeaway points for me from this talk.
Vasculitis is a cycle and as such there is no true end point, no cure at this time.
The cycle is:
- Active – high inflammation
- Inducing Remission – trying to stop increasing inflammation and lower it
- Remission maintenance – keeping inflammation low or undetectable
- Relapse / Flare (and then, we go back to Active and start over again)
Questions doctors ask themselves to see if Vasculitis is active and where is it active
- Eyes – red, painful, loss of vision?
- Sinus problems, Headache, hearing loss?
- Skin rashes, leg ulcers?
- Cough, shortness of breath, painful breathing?
- Neuropathy – pins and needles, burning. Numbness, wrist or foot drop?
- Joint Inflammation?
- Kidney – blood in urine?
- Non specific – fever, fatigue, weight loss?
HARD for doctors to tell active disease verses damage.
Tests that help doctors tell if Vasculitis is active (there is no definitive test)
- ESR and CRP measures inflammation but may be is non specific and can vary lab to lab and day to day for the patient. If normal the doctor does know there is no active inflammation but higher than normal could mean a variety of things.
- Urinalysis – red blood cells in urine could mean Vasculitis is active in the kidneys
- ANCA – In some patients ANCA increases in active disease or becomes suddenly positive but not a great test because for some patients ANCA is never positive or doesn’t increase even if Vasculitis is active.
- Chest x-rays, CT scans, MRI/ MRA – may be able to see inflammation
- Bronchoscopy / Endoscopy- look for inflammation
******There is NO perfect test to see if Vasculitis is active ********
If doctors find active disease they need to suppress the inflammation.
Drugs they may choose to use are (but not limited to)
- Immune suppressing drugs such as Imuran and Cellcept
- Methotrexate (MTX)
If Vasculitis not found to be active then the doctor needs to treat the damage not the inflammation.
- After diagnosis patients usually flare.. then they may have another flare… The damage from the initial onset and each flare is accumulating!!!
- The longer the Vasculitis is active the more damage that may occur.
- Damage means injury to a blood vessel and that equals damage to a part of the body.
- Often patients are no longer dealing with active Vasculitis but they are left to cope with the damage left behind.
- Less flares = less accumulated damage so it is very important to treat flares early
Common damage that Vasculitis patients are left with from the Inflammation:
- Kidney (reduced function)
- Nasal blockage and polyps
- Hearing Loss
- Abnormal breathing tests / reduced lung function
- High Blood Pressure
- Heart issues
Common damage that Vasculitis patients are left with from the medications
- Heart Problems
- Cataracts and Glaucoma
- Muscle weakness and Fatigue
- Low blood counts (both white and red)
- Hair loss
- Avascular necrosis
Once again…. Need to emphasize it is VERY hard to know what damage is from when the Vasculitis was active and what is from the medications.
How do doctors treat the damage?
- Nerve pain meds, Ex: Lyrica, Gabapentin
- Osteoporosis meds – calcium and bisphosphonates
- High Blood pressure meds
- Diabetes meds
- Aneurism repair
- ENT (ear, nose and throat)
- Orthopedics to repair broken bones
How can we reduce the damage caused by active Vasculitis and medications?
- Early diagnosis and treatment
- Close follow-up
- Minimalize relapses
- Catch relapses early
- Keep patients on maintenance treatment
- Limited doses of high dose prednisone (notice the term high dose… not off prednisone)
While being treated what a Vasculitis patient can do to prevent non Vasculitis illnesses and infections.
- Avoid sick people
- Wash your hands and hand sanitizer
- Vaccination – NO live vaccines!!! And he recommends NO shingles vaccine while on high doses of prednisone (again notice the high doses of prednisone used here. Shingles vaccine is ok if on low dose prednisone)
- Pneumonia (there are two types and we should actually have BOTH types… this kind of made everyone in the room go.. “what?”)
- Flu – but not the live nasal form
- Laboratory Monitoring (aka blood tests) He pointed out your doctor may ‘forget’ you still need to be monitored even when your Vasculitis is not active. We need to monitor for damage, drug effects and trying to catch a relapse early.
- Long Term cancer surveillance especially if you have ever been on Cytoxan.
Side Effects and damage of some Common medications used to treat Vasculitis
- Weakness in arms and thighs (ex: hard to climb up stairs)
- Muscle atrophy
- Fracture risk
- Monitor bone density
- Rituximab (Rituxan)
- Removes patient’s B cells
- B cell counts must be monitored by blood test.
- May lower IG level (also should monitor while on Rituxan)
- Low blood counts
- Greater chance of infections
- Hard on the GI tract
(OK some honesty here…. My hand was really hurting after writing 4 pages of notes so I kind of ‘spaced out’ and did not write down the notes on Methotrexate, Imuran, and Cytoxan. Sorry, but maybe someone else got the notes and I can fill it in later)
How can you help prevent / lessen some of these side effects / damages from Prednisone?
- Weight bearing exercise
- Avoid alcohol (I’ll drink to that… sorry just making sure you are all still reading)
- Avoid tobacco
- Have 1,000 – 1,200 mg of calcium per day total, including diet. Caveat being that calcium from foods is MUCH better than the supplements. Milk has about 300 mg of calcium a glass.
- Vitamin D supplements – 800iu recommended unless you are low in D.
- Bisphosphonates – the benefits of these out weight the risks for patients on long term high dose prednisone.
The BIG takeaway points of Dr Warrington’s talk were:
- Prompt diagnosis = less damage
- Close follow-up is essential
- Important for doctors to distinguish Active Vasculitis symptoms from Damage symptoms (that is why your doctor may be sending you for those extra tests… they need to know to move forward and recommend treatment)
- “Patients who are empowered do better” (Need I repeat this? Yell it from the highest building? Empower yourself by learning about your Vasculitis and treatments.)
I really enjoyed the talk and knew this was probably a lot of information that Vasculitis patients would like to read / know. I tried to take careful notes and hope they are acute.
Please see part 3 for the Last talk of the day and my overall review.
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