More basics from H

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Hob@...

Date: Sat Aug 26, 2000 7:47 pm

Subject: More basic stuff for Newbies

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Some of this may be repetitious. Some of it I did not include in my first

basics posting.

Always remember that RP is a form of auto-immune sytemic vasculitis. There

are at least 19 forms of that disease and many patients have more than one.

It is treated with anti-inflammatories like Prednisone (steroid) or with

NonSteroidAnitInflammatoryDrugs (NSAIDs) NSAIDs have fewer side effects at

first but after patients have been on them 2-3 years they often have to quit

because of internal bleeding. Prednisone has bad side effects but if you

can get down to a dose of 10 mg or less most of those side effects go away

and you can take it safely for years and years. Many people can get down to

10 mg or less within 9 months to a year of beginning prednisone for RP.

The second drug that is used for any vasculitis is an immuno-suppressant.

Immuran, cytoxan, and methotrexate are immuo-suppressants. They control the

antibodies our systems make that attack our own organs while prednisone

controls the inflammation that attack causes.

All published research I have found says that prednisone ALONE will help to

reduce or stop the inflammation of RP but it WILL NOT get you to remission.

A second med (immuno-suppressant) is necessary for patients to safely reduce

pred. dose or get off it completely or to achieve remission. Without an

immuno-suppressant you may help the pain and inflammation with NSAIDs and

prednisone but you will not get better in the long run. Patients who do not

take immuno suppressants have more flares (relapses) than those who do.

Immuno suppressants are toxic and doctors hesitate to use them. Some may try

to avoid them entirely if symptoms are not severe. Work with your doctor.

Discuss the options and all the risks so you understand his treatment.

Enbrel is thought to work as both an anti-inflammatory and an immuno

suppressant.

Here is some of the stuff I have gathered from list postings or from research

I did because a list posting made me curious.

1) You do not have to tolerate painful flares until your next appointment.

When you are in pain, have redness or swelling and your dose of pred. or

NSAID doesn't help, do NOT wait. Chances are you need to increase pred. or

add another medicine. Contact your doctor at once. Getting proper

treatment quickly can keep permanent damage from a flare at a minimum. Go

to an emergency room if you have to. Be sure to have ER personnel test your

sedimentation rate. (That is NOT always high with a flare but if it IS high,

you know you need anti-inflammatories right away.)

2) some flares occure WITHOUT PAIN. List members report difficulty breathing

as the only symptom that there was something wrong in their airways. Some

had episodes of dizzyness (vertigo) without any pain at all in the inner ear.

Do not wait for pain to accompany possible RP symptoms. Report " every

little thing " that lasts more than a day to your doctor. In the case of

dizzyness, if it lasts more than an hour and you feel dizzy even when sitting

still or lying down, report it right away. Same with ringing in your ears.

3) skin rashes are significant. They can be shingles (caused by your meds if

you ever had chicken pox) -- which is VERY painful (feels like the affected

area was hit with a baseball bat even before the blistery red rash pops out).

They can be " purpura " which are rashes typical of various kinds of

vasculitis. It is a good idea to have a dermatologist who knows about

vasculitis on your team of doctors in case you get a rash that needs to be

biopsied for diagnosis. DO NOT wait until the rash has been there three days

to call the doctor. Call at once when it has lasted 24 hours. If you wait

too long a biopsy may not be conclusive. Sometimes a biopsy of a rash will

show that you need different meds.

A skin rash biopsy has to go deep enough to get the bottom layers of the

skin. If there are inflammed blood vessels causing it they may not show up

it it is not deep enough and you will get a false negative result. It is

done with a " punch " apparatus.

4) You don't have to put up with heartburn and stomach problems from your

meds. Ask your doctor to give you something to help when TUMs or your

favorite ant-acid just doesn't do it. If you are on an antibiotic like

Levaquine that makes you a little nauseous, ask for something for the nausea.

LIkewise you don't have to put up with leg and foot cramps from high dose of

prednisone. Rx Quinine will usually take care of it.

5) If you are taking prednisone, ask your doctor how large a dose you should

take (over your maintenance/daily dose) if you should have a flare. Take

that increased dose at once when you know a flare is underway and get to the

doctor as soon as possible.

Learn the side effects of high dose prednisone. Get the prednisone info

sheet from your pharmacist. Some side effects are: a) Muscle weakness. If

your large muscles (legs) get weak and stairs seem to be very steep, do NOT

do exercise that strains them -- you risk damaging them permanently if you do

strenuous exercise while on HIGH dose of pred. But you need to do something

to keep them toned. Walking (not too far so you get over tired) is great.

Rotations on a stationary bike is also very good as long as there is minimum

work load. heartburn. Get something for it. c) red, flushed skin. d)

increased eye pressure. Be seen by an opthamologist when you first start

taking it as a baseline exam. Then see him every 3 months while on HIGH

dose. Pred can cause glaucoma and cataract. Lens implants for RP patients

are OK. e) cover up in the sun. f) You may need to take extra calcium or

a calcium bonder like Fosamax because pred leeches calcium from bones. There

are also nasal spray calcium bonders if fosamax gives you chronic heartburn.

g) pred. makes you hungry and you have a tendency to eat more than you need.

Try to control that urge from the beginning. It takes a LOT of will power.

Avoid refined sugar in particular. h) Pred. can induce diabetes. Fatigue,

shakiness, sweating for no reason should be reported.

IF YOU CANNOT SLEEP get something to help. Ambien may help you get about 4-6

hours sleep while on high pred. Sometimes you can take one at bedtime and

another around 2:00 a.m. It can be addictive but if it is the only thing

that works most docs will say, " We'll cross that bridge if we ever come to

it. You need to sleep. "

6) RP/vasculitis can affect the nervous system. Tingling toes and fingers

or numbness on the skin on hands and feet (other places, too) in particular

may be from neuropathy. Patches of skin become insensitive to cold (ice).

Sometimes neuropathy also causes a sort of burning pain in the affected areas

it you rub them (pull the sheets over your feet) or stretch them a certain

way. Report these symptoms to your doctor as soon as possible.

7) RP can cause symptoms that are very much like arthritis. If you have

such symptoms you might ask about some of the new arthritis meds like ENBREL

that some list members are taking. (Without the list I wouldn't know there

was such a drug). Rituxan is another new med one member has mentioned. It

was developed for cancer (like cytoxan and methotrexate) and may turn out to

be good for RP, too.

8) A feeling of something stuck in your throat -- something that you can't

swallow -- can be caused by meds like pred., fosamax, and others we have to

take. It can also be a symptom of a flare. Make sure you do not ignore

this for a long time before telling your doctor about it. If it doesn't go

away, tell your doctor again and again.

9) Keep a disk directory or floppy disk of saved messages from the list. As

you go along you will learn how each message you want to save should be

titled so it is easy to find if you need it -- i.e., by the name of a

medicine or by the name of an organ like ears, trach, nose, eyes, etc. I

have used some messages like the ones about Minocin and Zithromax to ask my

Rheumy about whether or not those antibiotics would be good for me. Names

of doctors in certain areas help all of us. Addresses of list members help

you to find each other when you travel.

10) Make a list of your meds and doses including all vitamins and

supplements. Be sure to change it when your doses change or when you add or

subtract something. On the same paper have your favorite doctors' (one or

more) names, addresses, pagers, etc. so ER personnel and other doctors can

make contact. Also have a short description of RP, being sure it is clear

that it is a form of auto-immune systemic vasculitis. If you have anything

that ER personnel should know about like a trach stent, allergy to certain

drugs, chronic infection from intervenous needles, etc. be sure to note that

on the paper. Your doctor may want to write a letter for you to carry, too.

Keep copies in your car(s) and in your purse. Make sure every family

member has one or knows where to find one. That way you won't have to worry

about being on your own and trying to explain a rare disease to a new doctor

if you have any emergency when you are away from home. It doesn't have to be

an RP emergency. The RP info is important for all emergencies.

I also found a number of articles on RP that I printed, thanks to the list.

The summary one by Dr. Trentham at the list web site is really a good place

to start. If you don't have access to a doc who knows about vasculitis, that

printout may be a good tutorial for the doc you end up with. The UpToDate

Medical information CD for 1999 that is available in most hospital medical

libraries also has a long article about RP by Dr. Jerome Hermann (under

Rheumatology). It includes clinical manifestations, diagnostic proceedures

and treatment. It is much longer than Dr. Trentham's article and it has

color illustrations.

I wouldn't know any of that if I had been on my own -- I know it because of

the RP list.

Hang in there, newbies.

H.