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Liz -- Energy levels

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In a message dated 08/05/2002 6:22:58 PM Central Daylight Time, Rpolychondritis writes:

13

Date: Mon, 5 Aug 2002 11:05:45 -0700 (PDT)

Subject: Energy Levels

About energy levels, I am pretty sure my relative lack

of energy is due to the rp, not the meds. I was ill

for quite a long time before rp was diagnosed (during

which time I have since found out, a lot of my friends

thought I was not long for this world!) anyway I had

NO energy, I felt tired all the time. Mind you, I was

having breathing problems all the time! However since

I have been on methotrexate I have felt SO much

better. Imuran I found did make me tired. Since I

added plaquenil to the metho/pred mix I can stay

pretty well all week. Metho by itself seems to run

out a couple of days before the day I take the next

dose. High doses of pred do give you higher levels of

energy so when you drop down your body takes time to

adjust.

It does take quite a time to get the meds right, I

think and because we are different there is no exact

combination. Actually, I feel really blessed that

approaching 60 I feel 100 percent better than when

approaching 50!!!

Liz,

See? I KNEW you'd shed some light on this problem. I, too, was tired YEARS before being diagnosed with RP. I kept telling the doctors there was something wrong. Now, I'm on Imuran and STILL really tired. Dr. Buckner suggested Methotrexate, but I've heard it makes you really sick, so I would think that would not be a good thing. I, also, am approaching 60 but I don't think I'm feeling better than when I approached 50.

Can anyone on Imuran answer this for me? I take two tablets daily. Do you ever get to a point where you can start lowering the dosage? Or do you pretty much have to stay at the dosage where you are? Clear as mud?

Thanks for your input.

Love,

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> Liz,

> See? I KNEW you'd shed some light on this problem.

> I, too, was tired YEARS

> before being diagnosed with RP. I kept telling the

> doctors there was

> something wrong. Now, I'm on Imuran and STILL

> really tired. Dr. Buckner

> suggested Methotrexate, but I've heard it makes you

> really sick, so I would

> think that would not be a good thing. I, also, am

> approaching 60 but I don't

> think I'm feeling better than when I approached 50.

>

> Can anyone on Imuran answer this for me? I take two

> tablets daily. Do you

> ever get to a point where you can start lowering the

> dosage? Or do you

> pretty much have to stay at the dosage where you

> are? Clear as mud?

>

> Thanks for your input.

>

> Love,

>

>

Hi ,

I'm on Imuran also and have been for at least a year,

I believe. I take three tablets daily. I can't lower

my dose as long as I am getting Remicade. You have to

be on something like MTX or Imuran or it can cause

problems. My doctor doesn't want to mess with any of

my med's until I can get off prednisone....if thats

even possible. I don't know if Imuran makes me have

less energy. I'm like you about telling doctors for

years that I had no energy (among other things) and

something was not right. Of course, they didn't

listen.

Take care! Love, squeek

=====

__________________________________________________

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