Re: Digest Number 479

[Guest guest]

In a message dated 03/08/2000 10:40:35 PM Mountain Standard Time,

Rpolychondritisonelist writes:

<< I am determined to stay off

of the steroids - I will take more pain meds if I have to! Is this stupid

of

me? My blood work is good so I don't see any reason not to try to live with

the pain and stay off of those nasty meds. Any thoughts on this? Love,

>>

,

Steroids have serious side effects but without them you are also risking

permanent damage to joints, heart, hearing, vision, voice, etc. Most good

doctors will do everything possible to get you off steroids or down to a

" natural " dose before you have to worry about things like leukemia -- those

things start to pop up in susceptible patients after 2 years and longer on

steroids. They give the high dose of prednisone in the beginning to " stop

the clock " -- limit damage from inflammation and get the disease under

control and they reduce it to a body's normal natural dose as soon as

possible. There are NSAIDs (non-steroid anti-infammatory) drugs they can

use but if you are still having serious symptoms while on one of them it may

mean it simply does not work.

Every flare can cause some damage and using steroids can reduce the number of

flares significantly. So you risk the problems of continued use of steroids

in order to reduce the risk of floppy ears, Bob Hope nose, loss of vision,

heart disease, and loss of the use of limbs, etc. In addition you have to

deal with the pain while taking that risk. You really need to have a heart

to heart discussion with your doc about the pros and cons of both before you

decide you want to avoid steroids at all cost. Ask him exactly why he has the

opinions he has -- what experience he has had to support them. Find out what

percentage of his patients on steroids actually have problems associated with

suppression of bone marrow and what they can do if that happens.

Consider that the cost of avoiding steroids may be a wheelchair and severe

pain along with deafness, blindness or heart failure while you are relatively

young.

The " improper blood flow " in your feet and the blackish rash makes me

suspicious that you have another kind of vasculitis in addition to RP. I

have polyangiitis which creates little beasties that attack the blood vessels

from the inside, causing them to weaken and leak and have aneurysms. A rash

around inflammed soft tissue or tender blood vessels is a symptom. My rash

was reddish, not dark purple although I have some spots on my bod that look

permanently bruised -- one spot on my arm was a large purple bruise that

developed overnight without any known cause. It has been there for over a

year and is only now fading to the point that I hardly notice it. I also got

a big bruise-like mark that covered the top of one foot just before the

neuropathy started. It took several months to go away.

If your purple freckles are a kind of angioma that means the ends of small

blood vessels are rupturing/leaking maybe there is an underlying cause that

is weakening the vessels -- like micro-polyangiitis. (The other kind of

polyangiitis causes worse problems!)

Your doc would do you a favor to have a dematologist at least look at the

rash or biopsy it as a precaution. The rash may be an opportunity to

diagnose something that you cannot diagnose any other way. Don't let it fade

without taking the opportunity to get Dx.

There is a blood test to show if you have polyangiitis -- P-ANCA antibodies

and another factor show up but not always. They had to test me 3-4 times

over three months before the P-ANCA showed up during a flare although the

other factor (something with a 3 on it) was there before that. Other types

of vasculitis like Lupus also have their own blood factors.

My vasculitis can cause pneumonia and rapid kidney failure -- you need urine

test for creatinine, protein, blood and other factors at least monthly and if

you ever cough blood you need immediate attention. It responds best to

cytoxan. I hate to take cytoxan because of its side effects but it was

death from kidney failure within 2 years or take the med. Since I started it

my kidneys have returned to normal. If I have other problems in 2 years

because of the meds, they have still bought me some time during which I live

relatively pain free and able to function normally. Of course, at my age

thoughts of mortality are not so significant as they are for younger people

-- if I live the 8-10 minimum years the meds can give me I will be beyond a

normal life span anyway. I could make it to 20 years if I get remission.

There is no chance of remission without the toxic meds when you have some

forms of vasculitis.

You mention blood work that is " so good " you don't see why you should take

the sterioids. How about urine? How is your breathing -- do you wake up at

night just to take a deep breath? Is your nose runny or stuffy? Does your

throat feel somewhat congested..do you clear your throat a lot? Can you pop

your ears? Do your eyes burn or itch? Just how many symptoms are you living

with besides pain in your feet?

Remember, that pain is a sign that some damage is being done. You should ask

your doc just what " poor circulation " could ultimately lead to in terms of

permanent damage and if steroids and immuno-suppressants would help reduce

the damage and your dependence on pain killers. If your doc doesn't know

what the consequences are because you are his first and only RP or vasculitis

patient it may be up to you to find out for yourself -- but you have to know

if you have another vasculitis first.

My doc is already talking about trying to get me completely off prednisone

before a full year has passed, and changing my cytoxan to immuran for

maintenance if I continue to show progress and the neuropathy can be

controlled. If I had not taken the meds she would not know I would make such

good progress in such a short time. In the meantime, I always have the

option to stop the meds myself if I ever feel the risk versus the benefit is

too great.

I believe knowledge is power because it lets you overcome fear and make

informed choices.

H.

[Guest guest]

Reply to :

<<

Why is boosting the immune system a bad thing?

RP is one of the diseases for which the treatment can be almost as bad as the

disease itself -- side effects cause other problems and depletion of B

vitamins seems to be one of them which further supresses the immune system

and causes damage to liver and nervous sytstem.

Some docs treating auto-immune disease think that by boosting the immune

system you also increase the little beasties that are responsible for your

problems and can invite a flare. It is a catch 22 situation. Damned if you

do and damned if you don't!!

Dr. Trentham appears to be one of the more conservative Rheumys and opposes B

vitamins (maybe he approves them in extreme need) for RP patients per info

other list members have provided (I have never seen Dr. Trentham). My doc is

giving me folic acid to see if it helps the neuropathy and I am willing to

risk a flare in order to find that out. If it does help and other symptoms

remain under control we win. If I have a flare they will first try

increasing prednisone -- something they are very reluctant to do. They may

just watch blood and give B only when it starts to show lack or if I have

other symptoms of deficiency. Don't know if they would take me off the B

vitamins because they are really important for healthy liver and nerves --

severe neuropathy (lack of B vitamins?) can cause demylenization of nerves

and permanent damage per some research I have read.

>>My mother had Peripheral (?) neuropathy because of pernicious anemia. It

prgressed to the point of using a walker most of the time.

My friend in Denver who just had plasmaphersis for neruopathy associated with

auto-immune factors (severe RA and vasculitis) that did not respond to

prednisone and cytoxan (I don't know if they tried B vitamins) was struggling

about using a walker before treatment. She is still using it but is much

stronger, thinks she may be able to put it aside eventually.

If your mom had pernicious anemia (I think that is related to B defficiency)

you should be particularly aware of any lack of B in your system -- it could

be genetic as well as induced by RP meds.

>> I was on Xanax for 6 years. Started at .5mg at bed. Worked wonderfully.

After a few years had to increase to .75mg and then 1.0mg. My new rheummy

wanted to take me off because he said it was only a 3-4 hour drug. He then

put me on Ambien. >>

I was given Alprazolam and Meclazine for extreme dizzyness in hospital and

the Alprazolam did a good job of keeping me asleep then. Otoneurologist says

it is good help for dizzyness and other docs say it is good to use when they

want patients to sleep. I don't take it during the day but sometimes will

take it in the middle of the night when I can't sleep. I take PAMELOR for

sleep and usually wake up sometime between 1:30 and 3:00 a.m. Can go back to

sleep most of the time but if I am awake for an hour I will take the

Alprazolam.

Ambien does not seem to help me sleep very much. It is possible that I am

simply in the habit of waking after XX hours of sleep no matter what I take

and until I find something to break that cycle it will continue. Ambien is

also addictive.

Most docs know how long you will sleep with what med. Some of them really

don't work beyond 4 hours and you have to take another dose of something to

sleep longer. You should ask how long the Ambien is supposed to work and if

you should take a second if you wake up more than 4 hours before you want to

get up.

H.

Colorado Springs

[Guest guest]

In a message dated 03/08/2000 10:40:35 PM Mountain Standard Time,

Rpolychondritisonelist writes:

<< My lower back is killing me .LOL Could be because of my work .

I always thought prednison would take care of the pain .Or at least I was

hoping ,since I do not can take pain medicine .Now today the bottom

of my feet are burning too . Could all this come from the prednison ,this

burning ????????? >>

My doc told me that my ribs and back would get achy from the high dose pred

when I was on 60 mg. Then when the dose went down she said I might get the

achy ribs, etc. again for a few days. She was right both times. But I

don't remember burning feet then. Only now since reducing dose to 12.5.

You can look up the side effects of pred on the Mayo site:

http://www.mayohealth.org/ups/html Just type in the name of the drug and

then scroll down the next page that comes up.

H

H.

[Guest guest]

Dear Angie,

I will be praying for you. I wish there were something else I could do...

I was wondering how you could keep going with your foundation projects when I

knew you must be pretty tired. Please have someone in the family forward any

of the foundation stuff you wanted me to work on. Maybe some of us on the

list can carry that ball while you get some rest.

Hob@...

Hobbs

4803 Constitution Ave.

Colorado Springs, CO 80915-1008

------------------------------------------------------------------------------

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> DOCTOR'S GUIDE E-MAIL EDITION

Metoprolol Improves Survival Rates In Symptomatic

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http://www.pslgroup.com/dg/18c132.htm

A multi-national study has found that the beta-blocker

metoprolol appears to improve survival in some patients

with chronic symptomatic heart failure.

[Guest guest]

Janet,

Thanks for correcting my misspellings of the ear meds.

>>.BTW Pete also has temporal vasculitis(at least they are 95% sure that's

what it is.Don't want to put Pete through a biopsy as the treatment for that

is prednisone and he takes that anyway..Take care Janet >>

That is the " other " polyangiitis -- not micro-poliangiitis. There is a doc

at Duke U. doing research in that -- in the temperal vasculitis in particular

-- and you can find something about her and her Email address on the Duke

internet site or maybe by typing in temporal xxxxxxx or polyangiitis. When

I had shingles the first time I had such pain in my temple that an ENT doc

had me blood-tested for temporal something before the rash appeared. I

looked up the condition while waiting to learn if I had it but don't recall

what I learned except that it was unpleasant. You should try to find out all

you can about it and stay abreast of research in it so you know what symptoms

might develop that would indicate a change in dose of meds.

H.

[Guest guest]

- As far as the steroids go I think H. summed it up

beautifully..every flare can cause permanent damage..it's so important to

keep the flares to a minimum and when they start stop them..Janet

[Guest guest]

From C

Reply to Hob

Thanks for explaining all this stuff to me. I upped my pred 3 weeks ago and

am now starting to decrease. I take folic acid and b complex. I'm with you,

I 'm willing to risk that flare. Can't seem to get rid of tingling in hands

and feet.

Saw Dr. (PCP) are going to try upping Ambien to 10mg ( can go up to 15mg if I

have to) and see if I can get a few hours more sleep. Have been using

samples for 2 weeks, went to fill prescription today and insurance won't pay

for it. Guess we'll see what comes next. They were going to call Rheummy.

Maybe a blessing and another drug will work better. I've never liked taking

even asprin, and now all these are overwhelming.

Feeling much better today. Can' wait til Sunday when I get to take Meth

again lol

Thanks again for helping me through this. This group is wonderful. I love

ya all.

[Guest guest]

Hello ,

This is Auntie BeBe (Bonita) and if there is anything i can do, i am in

a town called , Ca. 95376 in the San Joaquin County, please feel free to

let me help, i truly want to help in anyway, i realize your all pretty

special ladies and gentlemen who cant help what this illness is, or what it

does, me myself i cant find and understand your pain but i want to help, i am

sure you know what i do, run a nonprofit agency and now i am collaborating

with another organization from i think not to sure because we are in the

planning stages and so forth, but it is in the public health institute and i

am going to push with all my strength and prayers and warm wishes from you

all, which i know i already have, to bring this illness out in the open, we

need to let the world we exist and we need support and also the funds so we

can find cures, or just help with expensives.. So please feel free to let me

help you all.

Love and warm wishes and my deepest prayers are with you all

Auntie BeBe.. ) Bonita)

[Guest guest]

Hi Bonita:

This is Donna. I have not been in touch with the group in several months and

it has been a pleasant surprise to know that people in CA have found the

group. I live in Pismo Beach.

I would like to know about your organization and so forth.

Do you have RP or do you have a family member or friend with this disease?

Donna

[Guest guest]

Hello Karyn and Everyone,

I have talked to my contacts here at the hospital about possible sponsorship

for your symposium. Pretty much what I got back that if it was a local

event (Texas) it would be a lot easier. Or if we had more time. The

hospital deals primarily with local account reps and rarely goes to the

corporate level.

But the good news is they might be able to help for next year's symposium.

As soon as you have a date for it Karyn, let me know. And can you please

(privately if you want) email me your contact information? So I can refer

them to you, when I do make finally have some good leads (not going to let

it drop that easily....)

There has been a lot of talk on the posts lately about IBS, and I would like

to throw my 2 cents in on the topic. I was diagnosed with IBS about 2 years

ago - long before any other digestive problems. I never complained to a

doctor about it, based that diagnosis on listening to my stomach then asking

questions. It has gotten a lot worse since the fundo and gall bladder

surgery. I have had constant diarrhea since then - 6 months now.

The doctor gave me Levsin for the times with I get bloated with gas. It

seemed to have absolutely no effect. At least none that I could notice.

Most recently he has me on Lotronex. This has brought the diarrhea down to

1-4 times per day. And some days there is nothing - diarrhea or otherwise.

When this happens, I will skip a couple of doses of the Lotronex until there

is movement again.

I ran into my GI here at the hospital yesterday. It was funny (in a sad

kind of way). Several weeks ago I made myself a promise of NO DOCTORS in

the month of October. It has been more than 2 years since I have not been

to a doc at least once during any given month. And I had an appointment

with the GI in Sept, another one scheduled for Nov and an appointment with

the Gyne in Dec (another major health issue I am facing with this

appointment). So I decided if I am going to do this, Oct is the only month

I can....

Well yesterday morning I was relating this to 2 co-workers.. My NO DOCTORS

resolve.. Then I walked out of the office heading to the cafeteria to get

some water. That's when I ran into the GI. Which would have okay if we

could have just said hello. But he asked several times how I was doing..

Kept changing the subject. Finally on the 4th time I told him. He wants me

to try taking more Lotronex (2 pills) in the morning and one in the evening

for one week - then call him next week. As I am still seeing a lot of fat

in my stools he will be ordering the " 72 hour paint can stool test " . So

much for trying to get through a month with seeing a doctor.... Later in

the day, it dawned on me that it was usless to even try. I am due for a 6

month followup with the surgeon sometime this month. Thought about just

blowing it off... But with all the problems I have had since then, might

just be a good idea to go see him. Afterall, he is the one who finally

listened to me about my gall bladder and had it checked before opening me

for the fundo surgery. Maybe he might have some insight into all my current

problems...

So with my now defunked resolve, I have been trying to maintain a " low

profile " all the way around with my health. And have not posted much here

either. Seems silly now... But hope there is some understanding of my

psychie.. Plus I have also been busy trying to get all my ducks in line for

going back to school. I hope to start on a dual masters in Health Care

Management and Information Systems come January, desperately needing

something to think about other than my health. My way of fighting back

against the depression..........

Well, I hope everyone's day is as pain free as possible. You are all in my

prayers and thoughts.

Lots of Hugs

ReeAnn

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