The following are tips that I have come
across to help deal with some of the side effects of CNSV and its treatment.
- Importance of getting
a FLU shot
- Symptom Overlap
- One item that has
caused much anxiety for me is my inability to distinguish between disease
symptoms and medicine side effects. The following are some of the more
common ones and how I have begun to differentiate them. Remember that
these are my perception of how these disease and medicines are affecting
me. Everyone's presentation of CNSV is different and everyone's reaction
to medication can also be different. Hopefully you may be able to find
some commonality between what you are experiencing and what I have
described.
- Headache
- Headache is almost a
universal symptom of CNSV. It is also a common side effect listed on
most of the medicines to treat CNSV.
- Most of my headaches
that I attribute to the disease feel like more of a pressure sensation
with a medium strength headache. The headaches of this type seem to last
a long time and do not respond to pain medication.
- The headaches that I
attribute to the medication are more intense but usually last a shorter
amount of time. These types seem to respond to pain medication.
- Weakness
- Weakness is also an
overlapping condition of both CNSV and its treatment.
- One tip is that most
of the weakness caused by CNSV is usually focal (only affecting one side
or limb, but not both.)
- Generalized weakness
is most likely a result of one or more of the following:
- Cytoxan: Causes
progressive, generalized weakness. Should improve as treatment is
discontinued.
- High-dose steroid
usage: Should improve as steroid usage is tapered. You may experience
some myopathy and myalgia as the steroid dosage is tapered. It
generally lasts about 3 to 7 days but should improve after that.
- Anti-depressants/Anti-anxiety
medication: Most of these types of medicines including Ativan, Celexa,
Zoloft, list weakness as a side effect. Work with your doctor
(psychiatrist if you have one) to find the right medicine for you.
- Nausea
- Most of my disease
flares have been accompanied by a bout of nausea immediately proceeding
the event.
- Many of the medicines
can cause nausea, especially the Cytoxan treatment. The anti-nausea
medicine has kept me from throwing up, but just keeps me on the edge.
- Cognitive Deficit
- CNSV can cause a
cognitive deficit. Depending on where the vasculitis manifests in the
brain, I have had times where I could not count change, do simple math,
answer simple questions, and a period of Aphasia. These deficits have
resolved. It is imperative to receive treatment for the disease as soon
as possible to minimize the damage.
- Most of the
anti-seizure medicines can also cause a temporary cognitive deficit.
Their function is to slow the brain down to prevent seizure. This can
lead to a feeling of mental slowness. They can also caused slurred
speech, weakness, confusion, etc. They are necessary to control the condition,
but just be aware that many of the side effects that you may be feeling
could be coming from these medicines, not the CNSV.
- One note of caution,
I recently learned that Topamax can cause a permanent cognitive deficit.
Please check with your doctor if this medicine is suggested as an
anti-seizure medicine for you.
- Osteoperosis danger from long-term high-dose steroid
usage.
- While the use of
steroids is necessary in the treatment of CNSV, one drawback is the
possiblity of developing osteoperosis.
- Ask your doctor if it
is appropriate to have a baseline bone density scan done.
- To combat
osteoperosis, the doctor may perscribe Fosamax, a drug designed to build bone.
- Calcium supplements,
as well as eating foods high in calcium, are other ways to fend off bone
loss.
- In addition, weight
bearing exercise will stimulate new bone growth.
- More information on
Osteopeosis can be found here (Interactive Tutorial!
Opens in new window).
- Dry mouth relief. Many
of the medicines to treat CNSV can cause dry mouth. This can lead to
serious dental problems as well as being uncomfortable.
- Drink plenty of
fluids. Avoid caffine, alchohol, and smoking.
- My dentist recommended
a toothpaste called Biotene. It contains an enzyme for antibacterial
protection while your mouth is not producing saliva properly. This
product also comes in a mouthwash and gum and can be found at many
drugstores. I found it at Walgreens.
- My rheumatologist
prescribed a product called Mouth Kote, which is a topical spray that acts like
artificial saliva. It gives some temporary relief unless you drink fluids
constantly like I do (which you should be doing if you are receiving Cytoxan
treatments to prevent bladder cancer!).
- Slippery Elm can also
provide temporary relief by coating your mouth and throat.
- More information on
dry mouth can be found here.
- Mouth sores and
irritated tongue.
- Both Cytoxan and
Prednisone can lead to opportunistic infection in the mouth. Common
infections include Thrush, and bacterial. If you suspect these type of
infections, it may be wise to have your doctor do a test to see what type
it may be. Then a medicine can be prescribed to help deal with the
infection. It is hard enough dealing with the dry moth without a
secondary infection.
- My rheumatologist
prescribed a product called "Miracle Mouth Wash." It is a
mixture that can contain either an anti-fungal or anti-bacterial
medicine. It typically also contains Lidocaine, Benadryl, and Maalox. The
Lidocaine is a numbing agent that makes you feel like you just came from
the dentist. The Benadryl helps to lessen the swelling of the sores while
the Maalox coats the sores and tongue similar to what it does in the
stomach.
- More information on
Palliative Treatments can be found here.
- Acne caused by
Prednisone
- Stridex seems to work
for me.
- Scar Treatment
- I have used Vitamin E
oil on my biopsy scar.
- Wait until the staples
are removed and most of the scabs have fallen off.
- Do not pull the scabs
off bacause that can cause scarring.
- Maintain Immaculate
Hygiene
- Keep hands washed.
- Keep hands away from
eyes, nose, and mouth.
- Avoid crowded places
where you may come in contact with many germs, especially in the 7-14 day
range after Cytoxan treatments when your immune function will be lowest.
- Do not fly on
airplanes since the recirculated air spreads germs easily.
- Remember that any
illness you contract may cause a disease flare and should be avoided as
well as possible.
- Avoid cutting or
bruising
- Both Cytoxan and
Prednisone cause slow healing from cuts and bruises because of the
suppression of the immune system.
- This slow healing can
lead to higher chance of infection.
- Eye tests
- The use of steroids
can cause changes in eye pressure. It may be most evident after a pulse
dose of Solu-Medrol.
- Make an appointment
for an eye exam and tell the doctor about the use of steroids.
- The doctor can then
track your pressure every 6 months to see if the pressure is within
limits.
- Blurriness in the eyes
is a sign of a change in pressure. This change may be only temporary but
it may be better to be safe than sorry.