Hobb post

[Guest guest]

From: Hob@...

Date: Fri May 12, 2000 1:57 pm

Subject: Welcome Dan

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Welcome to the group, Dan. Sorry you have RP, but it sounds like you are

getting competent care. One other list member has written that her doc has

suggested that she join an experimental group using Enbrel. Are you in such

a group or are you taking the Enbrel because your doc feels it has proven

results for RP? I notice that you are also taking Metho. Since Enbrel for

RP might still be called experimental, that could be the " insurance " that you

need.

Did your doctor discuss your T-cell count with you before prescribing Enbrel.

I would be very interested to know if it was elevated since Enbrel is

supposed to suppress tumor necrosis T-cells. I have not seen anything

published about elevated T-cell counts in RP patients as yet and would like

to know if yours is elevated -- or was elevated before starting Enbrel and

Metho.

Please keep us posted on your progress.

Kathleen's comments about a positive attitude and mortality tables that

reflect too many mis-diagnosed or undiagnosed cases until there was a lot of

damage is right on the button!! Be thankful that you have been diagnosed

early because that means that you will probably get remission and have a more

or less normal life and life span.

Remission means you have no symptoms for an extended period -- you may even

be able to get off all meds for a while if you are one of the lucky ones.

Most literature indicates that it may remit for as long as two years at a

time but almost all patients will eventually relapse with a flare or series

of flares. Some few may be relatively symptom-free for many years on a

" maintenance dose " of meds but that seems most common among the patients who

were diagnosed after age 50 -- i.e., for some reason the older you are when

you get it the less severe it seems to be with some exceptions.

Amost all of the older literature says that anyone with RP will eventually

have some sort of disability. It may be loss of hearing or vision, loss of

balance (chronic dizzyness), neuropathy (legs go numb making it hard to

walk), or heart and lung problems. There are also certain cancers that seem

to accompany RP in some patients -- mostly in the sinuses, and throat

(larynx) and esophagus and sometimes in the lungs and lymph systems. But

with new research and drugs, the numbers of patients who have RP for a

prolonged period and do not have any significant disability may be changing

for the better. What Kathleen says is true -- take all those reports of

eventual " morbidity " with a grain of salt.

It is considered a fatal disease in that many people who have it eventually

die from a complication of RP -- but it is not unusual for people who have it

to live 30 years and more as long as they are receiving treatment. The

important thing is that a severe case left untreated can lead to death in two

years or less and those unfortunate cases skew the statistics for the rest of

us.

Prednisone at 10 mg a day is about what the body produces under normal

conditions and many people are able to take that for years without any side

effects (after starting out with a much higher dose). As your dose goes down

the side effects also subside. Some listers report that they have flares if

they take less than 12 to 15 mg of prednisone. Others do just fine on 10 mg

or less as a maintenance dose.

Most doctors will try to get you off a more toxic immuno-suppressant

(methotrexate) or to get the dose reduced as much as possible at an early

date. Sometimes they replace a med with a less-toxic one for maintenance and

if you have a flare they decide if you need to go back on the stronger med or

just up your dose of prednisone.

Dr. Jane Hoyt Buckner ( TEL: ) is doing research in RP and

accepts patients who are willing to send blood samples from time to time.

She has identified various components of cartilage/connective tissue that can

be affected by RP and account for problems with ears, nose and trachea. She

is also working on the roll that T-cells play in causing RP. Her web site

is www.vtnresearch.org.

You will find a lot of information about RP at various internet sites under

the keyword VASCULITIS. Those sites are particularly useful in identifying

specific problems with eyes, hearing, balance, heart, kidneys and other

organs. The possibility that any of these problems could eventually develop

varies with each patient (many never get them) but they point out the need

for baseline echocardiogram, hearing test, eye exam (prednisone increases eye

pressure - needs watching), bone scan (prednisone causes loss of calcium -

you may need to take calcium), and lung capacity. A number of RP list

members also suggest that patients be tested for mycoplasma (full spectrum,

not just STDs) because some of them have been found to have an underlying

infection that is treated with minocin, sometimes with both minocin and

zithromax. Some patients have reported testing positive for other types of

microorganisms and that taking the right antibiotic has made a significant

difference in their symptoms. I don't recall what these other " bugs " and

drugs are.

RP is not always the only form of vasculitis a given patient has. Many of us

have another form of auto-immune vasculitis like lupus, Wegner's

Granulomatosis, polyanggitis, Sjogrens, etc. or other rheumatoid conditions

like fibromyalgia. There can be an overlap of symptoms but blood tests will

sometimes determine that there are antibodies that indicate another

auto-immune condition along with RP. Those antibodies don't always show up

-- sometimes it takes several tests before they appear --usually during a

flare. ANCA antibodies are particularly elusive.

I am not suggesting that you constantly worry about your aches and pains and

write down every little twitch or tingle, but while you are learning what is

important and what is not important, do not be afraid to discuss " every

little thing " that concerns you with your doctor. Pain that persists in your

chest, nose, eyes or inner ears can be significant. Hoarseness that persists

or gets worse and worse should be reported. Stomach problems can be

controlled with meds so don't just put up with heartburn from pred or other

meds. Shortness of breath is significant - report it right away. If you

find yourself feeling dizzy (even when you are in bed) report it right away.

(Vertigo can be a sign of a flare.) Numbness or extreme tenderness anywhere

should be reported. Leg cramps are another side effect of meds that can be

controlled -- you don't have to live with them, tell you doc and he will give

you a med to help. " White stuff " in your mouth might be thrush (from meds) -

get treatment quickly before it spreads to the esophagus. Extreme fatigue

may be significant for several reasons -- could be medicine-induced diabetes,

for one, thyroiditis (hypothyroidism) for another. Fingernails and toenails

that do not grow can be a sign of deficient circulation. If your ears

suddenly feel blocked up (won't pop) or your nose keeps running for no

apparent reason, that can be important. A chronic cough, in particular if

you cough up colored matter, is very important. Persistent stomach pain,

nausea or diarrhea may be a chronic bowel disorder like Chron's disease which

sometimes accompanies RP. Vision problems or pain in the eyes or red eyes

should be reported immediately (RP can cause optic neuritis, scleritis and

pred can cause glaucoma). At least one list member has reported having MS

along with RP. MS is also an auto-immune disease and has many symptoms in

common with RP, optic neuritis being one of them.

You said you are on a high dose of prednisone. That will take the fat from

all over your body and redeposit it around your face, shoulders and waistline

and in your larger muscles. It will also give you a red face, neck and chest

and may cause your facial hair to grow very fast. Your skin gets very thin

without a layer of fat under it and you can cause a lesion on your knee just

by kneeling on a hard surface. Purple spots of various sizes come, get a

white ring around them and then go away (if they don't go away, report them).

A difficult problem with high dose prednisone is how it deposits fat in the

large muscles and makes them weak. Steps become VERY steep. It is important

to keep those muscles working without putting a strain on them -- my doc told

me I could not lift more than 5 pounds while I was on 60 mg pred but she told

me to do as many rotations on a stationary bike at MINIMUM pressure as I

could do every day. That was to keep the large leg muscles toned up while

they were still weak so they would come back faster when the pred dose was

reduced. But she forbid me to do any " crunches " because prednisone-weakened

muscles can be easily damaged by putting a strain on them. If you have not

discussed this with your doctor, be sure you do so as soon as possible.

Especially since your business may require you to do heavy lifting from time

to time. After you are down to 20 mg you can probably start to work up to a

heavier work load on a bicycle or lifting/swinging more than two to five

pounds during a 10-minute " power walk. "

I ride my stationary bike at least 4 miles a day and have finally gotten up

to " work load " setting number 3. But even with that exercise a 6-minute

treadmill test showed that I am " completely deconditioned " by the prednisone

according to the doctor. The good news was that my heart is unaffected by

RP. With that good news I was able to increase the work load on the bike a

little more in an effort to " re-condition " this old bod so that I won't have

to stop and rest after turning one spadeful of dirt in the garden.

Some of us have hot tubs but use them with caution...not too hot (my doc said

100 degrees max), not too long at one time. We also find that the jets can

cause as much pain as comfort if they are too strong. Those of us with high

blood pressure have to check with doc before using a spa at all.

You will find a lot of info regarding the prognosis for RP on the internet

but remember that some of the articles posted there may be outdated in terms

of diagnositic proceedures and treatment -- they may not reflect more recent

research or use of newer meds like Enbrel and how that affects overall

prognosis. However, they are still very valuable as general information.

To be up to date on the " real " prognosis you have to check on the most recent

research reports from time to time.

MEDLINE and other medical journal sites provide reports on published recent

research. 's Hopkins has a site dedicated to RP / vasculitis that tells

about the research underway there. The NIH has ongoing studies of vasculitis

and if you live anywhere near Washington, D.C., you might consider

participating.

H.