Re: A little about me

[Guest guest]

Deneen,

First let me say welcome to the group. I am sorry for the reason that you

are here, but we know what you are going through. Please be thankful that

they were able to diagnose you so early on, that in itself is a blessing. I

am still trying to get confirmation of my diagnosis, which is most likely

dermatomyositis or possibly polymyositis.

As far as the weight gain goes the two things you need to stay away from are

simple sugars/carbs and salt. A great deal of the weight gain is from fluid

retention. Complex carbs like whole grains and rice are okay as long as you

watch your portion sizes.

Did they tell you that playing basketball or exercising vigorously with a

CPK as high as yours is not a good idea? You can do significant muscle

damage because your muscles are already compromised due to the inflammation

from the disease.

I would say don't give in, but don't pretend to be okay when you aren't.

That is where people have a the hardest time understanding what is going on

with us because we " look so good on the outside " so they have a hard time

believing what we are experiencing on the inside. Be honest. You don't

have to whine and have a pitty party, but when you are hurting or exhausted

say so and do what you need to do to take care of yourself. If you don't

take care of you, you will be no good for yourself or your girls.

I too suffer with severe abdominal and chest pain. It affects my breathing

tremendously. I also have trouble walking and trouble holding my arms up to

do any tasks that require any length of time. I used to love to cross

stitch and now that has even become a chore.

Try to remember with the pain that you may not get pain free days, but

expect pain tolerable days. That way you don't set yourself up for failure

from the minute you get out of bed.

The mood swings are probably coming from the prednisone. Talk to your

doctor about this. He may be willing to give you something to help with

this. I take a med called xanax that has worked wonders for the mood swings

and I also take an anti-depressant called Paxil that has also helped with

the depression that comes from hurting all day. I used to be totally

against meds, but I have found that I just cannot function without them.

If you are having severe nausea, I suspect it is coming from the Relafen and

the prednisone. You don't have to take much food with these meds to help

protect your stomach. If you tolerate dairy products, you can eat a piece

of cheese or drink a little milk when taking them. I have found it is not

necessary to take them with an entire meal especially if I don't feel hungry

but I need to take my pills. It may be too much for your stomach to be

taking both at the same time especially if you have had problems with your

stomach and if you are going to be increasing the prednisone, it may get

worse. Please talk to your doctor about this because you could end up with

an ulcer.

How long have you been on the prednisone? It will cause you to have a

drastic increase in energy when you first go on it and after a few weeks

this usually tapers off. Now I am back to having no energy again.

The weather definitely affects my symptoms. Any change in the barometric

pressure causes me pain.

The diabetes risk comes with taking prednisone not from myositis. If your

sister has it, I am afraid that makes you more susceptible even if you

weren't taking prednisone. The key is to eat a very balanced diet and to

avoid the sugars and carbs like I said earlier.

Hang in there and we are here to talk anytime you need us.

Gentle hugs,

Fern

[Guest guest]

Wow, Deneen and Tricia, too!

In case you didn't notice, you're going through a whole lot right now!!

When I first got sick four years ago, I remember thinking....and being

grateful that my kids were relatively 'older'.....12, 15, and 18. I don't

know what I would have done if I had had a two or three year old at that

time. My heart goes out to you and also to our other new member with young

children, Tricia from NY, (who I have failed to WELCOME, please forgive me

:-)

Please let me tell you both about another possible option to treat these

rheumatic diseases.... I thank God that I stumbled upon the antibiotic

treatment. It has made a world of difference for me. As I read about all

of your symptoms I am reminded of all that I don't have anymore. Without

taking prednisone and all of its horrible side effects, without taking

methotrexate, and without a host of others, I have been able to get back to

80-90% of my old self. The antibiotic approach to these diseases is quite

carefully explained at the following websites: www.rheumatic.org and

www.roadback.org (I can say that I was pretty skeptical in the beginning,

but curious.) I have even submitted the story of my experience to the great

folks at the rheumatic.org website. It's listed under Patient Histories (I

think.) To satisfy my curiosity and to relieve my initial doubts, I even

attended a conference a couple of years back that was for people using this

treatment option. There I met (and hugged) many of the people you will see

named and mentioned at the websites.

The antibiotic treatment is becomming a bit more acceptable for rheumatoid

arthritis. Patients have demanded it, and the studies support it's

effectiveness. It works for DM and PM and Lupus, too. The only problem is

that there have not been the clinical studies for these satelite diseases,

so doctors are reluctant, ignorant, stubborn, prejudiced....OK, that's

enough.

Anyway, Deneen.....you are in the right place at the right time. Dr. A.

Franco of Riverside, CA (Arthritis Center of Riverside) is easily one

of the most experienced rheumatologists in the world who treats patients

regularly with the antibiotic protocol. People come from far and wide to

see him and he is one of the few doctors that I know who spends a lot of

time with each patient. (prepare to wait a while in his waiting room,

though)

Tricia, there are doctors in your area who are experienced, as well. If you

are interested, just ask.

Anyway, I will close before I write a book......speaking of, there is one

you should read. It is called The New Arthritis Breakthrough by Henry

Scammell. You might even be able to find it at your local library.

take care everyone, and thank you to the rest of the group for putting up

with my long posts. I can't help it....I know this works and would love for

everyone to get better, too!!

--Connie Hache from Richland, WA

A little about me

>

> Diagnosis: Polymyositis with a Lupus Kicker.

> Diagnosed: 11/10/00

>

> Right now, I take 20mg Prednisone, but I am going up to 50 on Monday. I

also

> take 200 mg of Plaquenil, 800 -1000mg Vicodin, 1000mg Tylenol 3, Ambien

> 10-20mg at bed, 1000mg Calcium, MultiVitamin and 800-1600mg Relafen.

Prevacid

> forget the dose.

> I don't really notice any significant difference with or without. Except

that

> the steroids make me gain weight. (20 lbs in 2 weeks)

>

> I have two kids. I coach and play basketball. I work full time and go to

> school part time. I have a really active life. But now, it seems, all that

> will change. I am scared.

> My husband and I are separated, but live in the house together. He is not

> helpful or supportive over this whole thing. I am not a quitter, I figure

if

> I go about my day like I am not sick I am better off. But I eventually pay

> for it (in pain) later on. So my husband thinks that means I must not be

that

> bad. He just doesn't get it.

> Changing everything is so hard to do. I feel like I am giving up, but

that's

> just the mental game.

>

> Pain: Abdominal (much of it still from the surgery, but this is the most

> infected/affected muscle); left arm and shoulder, hips and lower back.

> Lasts through the day. Pain killers take edge off, but don't make it

better.

>

> The meds make you crazy too. The mood swings are unmanageable. The lack of

> appetite is nauseating, because I have to force myself to eat when taking

the

> meds and I just want to throw up. Not to mention the weight gain making me

> feel horrible too. Not that gaining is so bad, but so much at once is

> overwhelming.

>

> I had a stomach biopsy which was extremely painful. They cut a few inches

> from my rectus abdominus muscle almost two weeks ago and I am still on the

> mend. That's where they found the PM. They say its in my shoulders, back

and

> hips too. Its wierd, I had a few episodes through the year where my legs

> would just give out and I couldn't walk. I went to the dr. and they made

like

> I was nuts. Turns out it was the PM in its earlier stage. Mine is in

proximal

> and dex muscles. But could be worse I understand. My CPK was 5000 last

week.

> I am waiting the results of my latest blood work.

>

> I have heard some people get CPK levels as high as 100,000. I can't even

> imagine.

> The dr. says I have to change my whole life. Some people go on disability

for

> awhile some permanently depending on their weakness. I am not sure that I

> will do either. Its hard to think about.

>

> My muscles will continue to weaken. I am losing tone every day. While

gaining

> weight, which is really weird. I feel like I have quicksand in my veins.

> It is hard to lift things. My arms are very heavy and tired. I can't

sleep.

> Even the sleeping pills don't help. The other stuff amps me up I guess.

>

> I am lonely, scared and depressed. I know I have people who love me and

will

> help me get through this, but at the same time they really don't and can't

> understand what I am going through if they have not gone through it too.

>

> This is my progress report. The doctors think it will help me if I write

it

> down and keep track and talk about it. Then its harder to do what I

normally

> do, pretend I am ok. Which would ultimately cause me to stop taking my

meds

> and make me worse off.

> My stomach biopsy uncovered the PM. I also have stomach reflux, and take

> prevacid to help that. The drugs induce stomach upset too so I am mindful

of

> that. Like I said before, I just got diagnosed. But had been having

strange

> unidentified symptoms for a year.

> I had been complaining sporadically about leg pain, numbness and such. The

> dr. thought that it was just " mental " . Really didn't consider anything

else.

> It only happened occassionally. But one day my stomach bloated up like I

was

> 7 months pregnant, very low in the abdomin, and the pain along with it

made

> it impossible to hold myself up. I never realized how much a person uses

that

> muscle!

> I went to the ER and upon checking my blood they found my CPK was 5000. I

was

> also having chest constriction, which made them believe I was at risk for

> heart attack. (I was 30). (I turned 31 the day after the biopsy).

> They immediately checked me in to the hospital for monitoring and tests. I

> had CT scan and MRI that showed severe inflammation and more blood work.

Then

> they decided to do the biopsy. The results showed moderate/severe PM. They

> can't say how well I will do for now, but I feel pain and have been for

some

> time. From what I understand it may get horribly worse long before it gets

> better.

>

> I live in Los Angeles now. But I am from Chicago.

> My girls are really helpful. My oldest is ten and she is trying to

understand

> what is happening. I used to be so active and now quick as lightening I am

> not.

> There are so many changes occuring. My little one is 3 and she is so

sweet.

> She comes to check on me all the time to make sure I am alright.

> I am going to talk to my boss about telecommuting a couple of days a week.

It

> might make things a little easier. Especially since the majority of my

meds

> make me drowsy. I don't want to quit, I need the benefits now more than

ever.

> I can do alot of work on the net too. I hope he goes for it.

>

> I understand some people get diabetes, I worry about that, my sister has

> diabetes. I don't know if that makes me more susceptible.

> Does the weather play a role in how you feel with PM?

> How does everyone manage with the weight gain? I am really frightened by

it.

> Thanks for taking the time to talk with me. It means a lot.

> I guess that's really it. Where I am, what I know right now. Tomorrow is

> another day. I expect more results from my blood and have some other

doctors

> to see.

> I am glad I found a forum to talk about it. That first day with the news

was

> a little overwhelming, even for a toughie like me.

>

> Deneen

>

>

>

>

>

[Guest guest]

Hi Deneen

First let me say that I live just outside of Temecula, Ca. I'm about

100 miles from you.

Your the first person I've heard of that had a muscle biopsy done on the

stomach...

When you first start out with the meds they do put you on high dosage of

Prednisone. This gives your body the kick start it needs. The bad side

is the weight gain. Once your CPK level reaches the normal level your

doctor will start to taper you down.

I use to take the Vicodin and also Tylenol but both were to much on my

stomach and they didn't control the pain so I was switched to Celebrex,

which I love. Some of the others on this list take Vioxx (spelling) for

the pain.

It will take time for everything to settle down and even then it might

take a little longer to find the right dosage for your meds. It's all

trial and error and you have to work with your doctor to let him know

what is and isn't working for you.

Your going to find that you'll have to trim down your activities. You

have a lot on your plate at the moment and I'm sure your situation with

your husband doesn't help matters either. The most important part of

all of this is rest, rest and more rest. I know this will be hard with

two little ones around and your husband not understanding your

condition. Do you have family close by?

The more you push yourself to try to get things done.....the more pain

you'll have not to mention the sicker you'll get. We've all been there

and it is a life altering disease, especially at first.

I suggest you ask your doctor for a different pain killer. Being in

pain all day long also wears on you and doesn't help matters any.

You mentioned mood swings, this could be coming from the prednisone.

When you start on the higher dosage the mood swings might get worse....I

could only stay on the high dose for 5 weeks then they had to lower me

down. I not only got the mood swings (not to bad) but also Prednisone

myopathy (really bad). In this case, they will put you on the

immunosuppressants. These drugs are used to keep your immune system

lowered so you can lower your prednisone. I take Imuran.

I also had the same leg problems long before I was diagnosed. At the

time I was seeing another doctor, Dr. Quack, who kept telling me it was

in my head among other things. I kept falling down, running into

things, walking like I was drunk, my speech was slurred. I was pitiful.

My CPK when I entered the hospital was 12,000. I was very sick and

could hardly breath. My PM affects all muscles even my eyes. I was

also diagnosed with the Anti-Jo-1 antibody which meant that I had

Interstitial lung disease. That was confirmed by a lung biopsy.

The quicker the disease is found and you get on the right medication,

the quicker the recovery. The problem lies with most doctors who have

never seen this disease. You'll meet Fern on the list who is still

trying to get diagnosed. She has had such a hard time trying to find

the right doctor who knows what there doing.

Your life does change with this disease. One thing for sure is NO

stress. When I first noticed my weakness, it was just slight at first,

I was going through a divorce. Through all of his mind games I tried to

convince myself nothing was wrong with me but I know my body.

I worked for an Aerospace company and I had to give it up. That was

extremely hard at the time. I had worked there for almost 19 yrs. Now,

I don't regret it at all. I went out on medical leave first and

collected state disability. I also was covered with short term

insurance which went into long term insurance.

I would talk to your boss and see if you can stay at home to work for a

couple days a week. This would help you to get as much rest as

possible.

If your still not sleeping at night, which is part of this disease,

you'll need help there.

I take Effexor XR. I like this drug because it was the only one for me

that didn't make me drowsy the next day.

A deep sleep helps to not only repair the muscles but this is the only

way to gain energy and strength.

As long as your CPK is still high rest is the only thing you can do. As

the CPK starts to fall mild exercise can start.

Pool therapy is great... I just wish I had a pool around here I could

use.

I think one of the first things that go through a persons mind when

first diagnosed is " What will happen to me " . Being scared and depressed

is natural. Your body is going through alot right at the moment. I

personally believe in a good cry. Just let it all out. It is however,

very important that your family and friends learn about this disease.

Print out as much information as you can and give it to them. Your

going to have days when you'll be very exhausted and need there

attention.

You asked about the weather... I hate the heat....in fact it makes me so

darn sick that I can't stand our summers. While the cold hurts my

lungs, I'll take the cold over the hot any day.

I gained 60 lbs and have only lost 10 lbs so far. But, I'm also 55 and

that makes a difference. Your still very young and it's my

understanding that the younger you are when you get this disease the

better the outcome.

Take one day at a time, rest as much as possible, have your husband try

to help you as much as possible also.

Hope this helps a little.

Vicki-PM

[Guest guest]

Hi Deneen,

My name is Ev--My last biopsie gave me a dx with IBM. I was told I had PM,

at first 1991, was also on Predisone--different mgs and trying to get the

doses of Pred. down, but every time I go lower than 10 mgs I am so weak, by

Drs orders I stay on that amount. The Pred. does cause stomach problems,

which I take 20 mgs of Prilocec, also take Imuran, Coumadin and Diovan (high

blood pressures). Yes you do gain weight but since I'm only on 10 mgs. I

haven't noticed any so far.

II know I'm forgetting to tell you something, so if you have any more

questions, one of surely will attempt to answer you.

Vicky,

I just called the Medicine Program, and I am approved, but it takes awhile to

get the prescriptions I ask for. So now I have to make an appt. on fri. to

get some samples

to get by on until the medicines come in. I simply can't afford to buy any

more--for example=Prilocec is $3.00 per capsule and I take one a day. You

know what I'm talking about Vicky because of your high drug bill.

I forgot to tell Deneen that I do have lots of pain--I'm under the care of a

pain management Dr. I take Oxycontin every 8 hours and Oxyc.I.R. as a

breakthru pill every 4 hours, if needed. Hope I haven't painted a bad

picture--there are always some one worce off, if you just look around!!

Love,

Ev.

[Guest guest]

Ev, that is wonderful news about getting approved by The Medicine

Program. I sent them an email on Saturday... I thought they would

answer it today but maybe they are behind. I called the clinic and they

are unable to accept my meds there. The clinic is very large and all

mail goes directly to the hospital end first. There afraid it will get

lost. I wanted to find out if I still could get in the program and have

the medicine sent to my home. I'll call tomorrow so I can find out

sooner. If I can't get on this program I don't know what I'll do. Hey,

your Prilosec is cheap. The pharmacy told me it's $185. for 30

pills.... I take 60 a month. Talk about expensive. Tomorrow I'm going

to call the pharmacy in this little town I live in and see what the

difference in cost would be. How long have you been on the Imuran? I

didn't know you were also taking it. As for the Prednisone, I can't go

lower then 3 mg's.... but that is better than on a higher dosage.

Deneen.... how are you doing today? I hope your having a better day

today. When you get the kids to bed, pop your head in so we know your

alright. I know, it's the mother in all of us that makes us worry...LOL

Teddi.... Come on girl, tell us how your doing? Ooooh wait, I bet your

beading your little fingers off for Christmas aren't you? We still need

to hear from you...Hope your ok...

I hope everyone else had a good day today and all the kids are doing

good.

Take care,

Vicki-PM

[Guest guest]

Vicki wrote:

<snip> Teddi...Come on girl, tell us how your doing? Ooooh wait, I bet

your beading your little fingers off for Christmas aren't you? We still

need to hear from you...Hope your ok...

<snip>

I'm doing better......been down the last couple

of weeks with sinus infection.......wasn't back

100% from vacation so that didn't help....

physically I'm better but my mental attitude

needs a real adjustment :-)..Have an appointment with my rheumy Wed so

he

should get me back on track!......Haven't done

a bit of beading.......sit in the recliner and

think about it but.............don't know if my

recliner is a curse or a blessing......lol

Teddi

mailto:teddifromok@...

[Guest guest]

Teddi... I'm so sorry your feeling so down. Your trip really wore you

out. I hope your doctor can do something for you to make you feel

better. I tried to call you earlier tonight but when the line was busy

I remembered that your on the web. I'll try tomorrow ... now I " m going

to bed.

Take care,

Vicki

[Guest guest]

Dear all:

I am sorry I don't write more. I am just very new to this whole process and I

get all these messages everyday and I am trying to get an idea of who

everyone is and what is going on. Its a bit confusing.

I am having trouble sleeping. So, I am feeling worse than I should be. They

have increased my pred to 40. I am seeing spots from it I think, which

worries me. The nosebleeds continue and I can barely eat. I am still gaining

weight though (go figure)!

I have continued to work and go to school. I played basketball Friday but

paid the price for 2 days (although I was proud of my 20 points-I even hit

two 3 pointers!) I don't think I could lift the ball today. My hands are sore

and my shoulders are weak. My head hurts and I get chest pains periodically

throughout the day. I hate complaining, but I don't know who to tell it to.

One member is having such a hard time just getting diagnosed, I feel horrible

for her. I have been struggling for over a year with these symptoms before

someone thought to do a biopsy to find out what the problem is. They are

still waiting to find out if I have MD on top of everything else! I can

understand the frustration and the desire to stop fighting even for a little

while. But really, DON'T GIVE UP! I hope you are writing everything down

every day to show the dr. what is going on. This really helps tremendously.

If you have substantial swelling in one area, a quick biopsy could diagnose

you. that's what happened for me.

I wish everyone a pain free day.

Deneen

[Guest guest]

Vicky,

I have been on Imuran for about a month this time. I was on it in Little

Rock--when I lived in Hot Springs. I was upped to 300 mgs. and after my

neurologist checked my blood level--it was affecting my liver, so was taken

off of it.

I'm on 10 mgs of Pred., which is fairly low--my reumatologist tried to lower

the mgs of it. and I just can't tolorate any lower. I have often wandered if

I could have PM plus IBM? I have never heard of a biopsy taken from the

stomach either!! We are never to old to learn. Thanks to and every one else

on your list, it's really comforting to me to belong and know there are

others out there that understand what we are going thru--especially for those

of us, who live alone.

Love,

Ev.

[Guest guest]

Ev... 300 mgs of Imuran is a lot. I was in bad shape when they put me

on it and my dose was 150 mgs.... he didn't want me on any higher

dosage. It sure does sound like you have PM rather than IBM but if

you've had the biopsy than it must be correct....unless the lab made a

mistake.

Take care,

Vicki-PM

[Guest guest]

Hi Ev

Thought I would let you know there is another

one on the list who lives alone.....well,,,,,,not

exactly......I am firmly kept in my place by my

four fabulous felines.....the furballs rule me

an iron paw

Teddi

mailto:teddifromok@...