Hi Mel

Thanks for your reply.  I do know some of the possible effects, but I was
just interested to know some actual cases.  Like I said, I have been on it
for 22 years - but mostly on 10mg or less - and haven't suffered too much
yet, at least not anything serious.  For about 10 years I was on 5mg.  There
have been the boosters of course for various bouts of medical fun.  I
have the bruising, thin skin, etc.  and my  immune system is lowered by
other drugs as well (I have a severe case I am told) and I am aware of the
risks with that.  I have annual bone scans to check my bones and I am doing
ok.  Slight osteopoenia but take Calcitriol to help.

Was your osteoporosis caused by the pred?  What doses were you taking?

Winny

Melly!!!

Please beware!

RE: Chicken Pox vaccine - and any other vaccine that is considered a "live
vaccine".  DO NOT HAVE IT!!!!

Any "live vaccine" used by a person with a weakened immune system (lupus,
etc.) will in fact cause that person to come down with a full blown case of
the disease rather than preventing it, as immunizations are supposed to
work.

Two weeks before my niece got married several years ago, I came in contact
at work with a child with chicken pox whose mother couldn't leave him at
daycare.  I panicked and got the vaccination.  Several days later, when I
was covered with these large itchy red sores, I called my GP and told him I
had chicken pox.  He naturally wanted to see me right away and confirmed my
worst fears.

Since I work in a facility that conducts medical research, and because this
just happened to be a pet topic for one of our senior scientists, I have
since learned that this is a rule of thumb that we should all follow.  If
your not sure, ask if it is a live vaccine.  If it is, don't have it.

To put this in perspective, the "normal" influenza vaccine issued every year
is generally safe for us to take.  However, the "nasal" variety being pushed
this year because of shortages of the injectable variety, was created using
a "live vaccine".  Not only do you need to stay away from this inoculation,
you also need to stay away from anyone that has had it for at least three or
four days.

Sorry about sounding like the harbinger of doom, but although this is now
accepted as common knowledge in scientific circles, I'm not sure that your
Joe Average GP would know this.

Hi Winny, it's me,Candi,

Years ago, I was on 20-40 mg. Pred for several years. I had lupus
pneumonitis, 8 of the other 11 criterion for lupus, which as you probably
know, all kinds of weird things going on in the meantime, but I got real
tired of taking all the meds (bowl of pills; breakfast of Championns,
right?). I stopped them all. Slowly; I knew how to do it. My doc wasn't very
happy, but he wasn't aware for several months because I didn't tell him. I
am in no way shape or form advocating that anyone do this, but I did. Since
becoming a vegetarian seven years ago, I haven't had any major problems.
Sure, my joints hurt, I'm still photosensitive (although that's been
sporadic cross your fingers), have fevers, feel yucky a lot, but I've not
been hospitalized for something weirdly life-threatening. How old are you?
Maybe because I'm nearly 48 has something to do with my lupus getting
'better'. I've read that sometimes when you reach menopause, this can
happen. Don't know. The last time I was in the hospital was 6 yrs ago
because of APS; I had a blood clot in my foot & they were sharpening the
knives to amputate because of cellulitis; VERY painful condition. Thank God
for Prednisone. So - double-edged sword we got going on here. If something
happens to me, I DO take Pred for it (I want to live), but I just don't take
it routinely. That works for some people, others have to take it all the
time. Lupus isn't a predictable thing.

Candi
----------

Hi,
Maybe I am being controversial here but in my opinion the only way anyone
will have to be on prednisolone for life  will be if they have been tested
and found to be not producing enough natural cortisone. Otherwise
prednisolone should be reduced when the patient is not in a flare or
active illness. Most illness goes through a remission period at some
point. It is your body and *you* decide what to do. You get yourself fully
informed and then you make your own choice, to follow advice or to
disregard it. As long as you know what you are doing.

This is just my own personal opinion of course.
I have been on it for 24 years and at last down to 4 mg alternate days.
Hoping to get off it one day, but it has to be reduced very carefully and
slowly. I would not say I am on it permanently, because eventually I hope
to not be on it. I have osteoporosis from being on it so long.
Am also on imuran/azathioprine.
Have joint problems, CNS problems and have had nepritis.