Re: Polymyalgia

hi nel,

i know i've come in in the middle of the converstation, but what is causing
your leg weakness issues? your spine?

and did i read this clearly that you are being prescribed pred by a regular
doctor an not a specialist? i'm concerned, because it sounds like you need
a specialist.

kate


"Nel" <yanelgal@xxxxxxxxxxx> wrote in message
news:p9sJg.21910$gY6.5663@xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
I can't understand why I don't have much pain at all. It's just my legs are
weak just like they are going to give out on me and have trouble climb
stairs. I have 5 steps to get in my home and I have to hold on to the
railing. I'm worse in the morning when I first get up, I have to touch the
walls or something to get around, but it's not pain except for a bit in the
knees, never the shoulder or neck. After I've been on my feet for a couple
of hours I can barely walk..I don't know what to do about dropping back to
10. I'm not much good at 15. I started with 40 mg and weakness went away but
slowly decreasing the dosage, I'm not to good..I'm really worried about the
eyes. My eye Dr. has me come in once a month to check the pressure and
everything. All this weight loss is not good either. I have a friend of a
friend that says she lost weight too. Did you have red spots all over your
hands and arms?and did your cheek puff up, seems my are a bit fatter. I
also have a bad time sleeping.

Another problem is I have Atrial Fib. I take Amiodarone for that (a bad
med.)and I thought at first I thought it was that causing all my problems.
Did you have red spots all over your hands and arms?and did your cheek
puff up, seems my are a bit fatter. I also have a bad time sleeping.
Now my cardiologist says not to have my teeth cleaned or any dental work
while on pred. except for emergencies. It's been 8 months since I've had
them cleaned and I can't stand it. and what if I don't get off pred for a
year or two..I can't go that long without my teeth being checked and cleaned
and maybe drill or what ever..I'm between a rock and a hard place. My MD
never mentioned it.. I guess it has something to do with the 4 antibiotics I
take an hour before cleaning and etc.
Thanks for answering my mail. Keep in touch.....Nel



I was on 5mg last year with just a little shoulder pain. Attempts to go
lower increased shoulder pain and stiffness. RD increased pred to 7.5mg
and
pain went away. I am now trying 6mg. I had a little pain at 6mg for a few
mornings, but none now.

When I started pred in November '01, relief with 20mg took one day for
change that allowed me to get out of bed without help. Three days for all
pain and stiffness to be gone. Before prednisone, I had to have help to
get
out of bed and to dress. Stiffness prevented me from turning over in bed;
I
could not move my shoulders at all until I had been out of bed for a
while.
I could only walk with slow, small steps. I could not taper down the pred
dose as fast as most others with PMR. If I tapered too fast, I had to
increase to greater that the last no-pain dose to lose the pain, and then
taper again slower. Most are able to get off within about two years. Some
I
have communicated with have had to stay on one or two mg for longer
periods.

When on the higher doses, I had a lot of trouble sleeping, had a lot of
energy, was cranky (wife said that was normal). Also hungry ALL the time.
As
for exercise, I did and do whatever I wish, which is not much exercise. I
have lost strength, but that is expected for my age, 70, and no exercise
program. At 6mg or less, I seem to have no side effects from the pred.
Excessive hunger is gone and I can diet when I want to. I lost 30 pounds
year before last, about twice what I gained on higher pred doses. I have
gained half of that back, a large part of it during two 2-week cruises
this
year.

I have had cataract surgery since I started pred, and pred may have caused
it to grow faster; no way to know. My pollen allergies are probably
reduced
because of the pred, a good side effect. My family doctor said he would
never prescribe prednisone to reduce allergies, but I got it as a useful
side effect.

One lady that I communicated with when I was first diagnosed was possibly
similar to you in pred side effects. She lost weight, had a lot of nervous
energy, and was bothered a lot mentally because of prednisone. She also
developed high blood pressure and high blood sugar levels. A bone scan
showed she had lost some density, but she did not have one for comparison
before she was on the pred for 6 months. She was younger than most PMR
patients, in her 40's. She was able to get completely off the pred after
about two years and felt great.

There are several long term pred users in this group. I think about 5mg is
usual, with an occasional temporary increase to reduce symptoms that get
bad
with their type of arthritis from time to time. Called a "flare". With
PMR,
a flare would be unusual. If you reduce the pred dosage slowly, you will
probably be able to keep reducing until it is gone. I think I am the
non-typical PMR pred user. Other PMR patients of my RD did not have to up
the dosage as I did when tapering too fast.

I was able to sleep much better when I got to 10mg pred. You should be
there
soon. Tapering below 10mg is slow because the higher doses causes the body
to stop the natural production of Cortisol. When the body does not start
back up, the long-term prednisone becomes necessary. My RD said that
physical stress is the only known thing to cause a natural increase in
cortisol.

Good luck. Stay in touch. I usually monitor this group daily, but only
step
in when some one with PMR shows up. The OTP jokes here are usually great.



"Nel" <yanelgal@xxxxxxxxxxx> wrote in message
news:WBnJg.13326$1f6.6241@xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
5 year??? egads!!! Is that what I've got to look forward to. I'm down to
15mg a day, but I'm still off balance and weak legs. Afraid for my eyes
too.
How much Pred. are you taking? Did you exercise when you had PMR? How
long did it take you to feel good again?

I'm to active for all this sitting around, and the Pred. makes me shaky
sometime, furry mouth and I can't taste much. Don't know why I've lost so
much weight. Sure didn't need to.

Thanks for your answer..Nel


Weight gain is normal, from water retention and increased appetite.
Biggest
worry is bone density loss and immune suppression. Some also experience
high
blood pressure and blood sugar problems. My PMR seems to be gone, but I
can't get off pred! Almost 5 years now.


"Nel" <yanelgal@xxxxxxxxxxx> wrote in message
news:4iMIg.4440$q63.4156@xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi,

Does anyone have Polymyalgia? and are you on prednisone?
How does it affect you? Have you lost weight?
Thank you for any answers......Nel











.

Relevant Pages

  • Re: Polymyalgia
    ... I can't understand why I don't have much pain at all. ... friend that says she lost weight too. ... about twice what I gained on higher pred doses. ... She was younger than most PMR ...
    (alt.support.arthritis)
  • Re: Polymyalgia
    ... I'm worse in the morning when I first get up, I have to touch the walls or something to get around, but it's not pain except for a bit in the knees, never the shoulder or neck. ... I have a friend of a friend that says she lost weight too. ... about twice what I gained on higher pred doses. ... She was younger than most PMR ...
    (alt.support.arthritis)
  • Re: Polymyalgia
    ... I have a friend of a friend that says she lost weight too. ... lower increased shoulder pain and stiffness. ... about twice what I gained on higher pred doses. ... She was younger than most PMR ...
    (alt.support.arthritis)
  • Re: Polymyalgia
    ... I was on 5mg last year with just a little shoulder pain. ... I lost 30 pounds ... about twice what I gained on higher pred doses. ... She was younger than most PMR ...
    (alt.support.arthritis)
  • Re: Polymyalgia
    ... I can't understand why I don't have much pain at all. ... friend that says she lost weight too. ... about twice what I gained on higher pred doses. ... She was younger than most PMR ...
    (alt.support.arthritis)