OTP: Galveston beaches, before and after

[Lew]

http://coastal.er.usgs.gov/hurricane...galveston.html

Just registered with news.motzarella.org. This is sort of a test posting.

[Harvey R. Stone]

"Lew" <[email protected]> wrote in message
news:gc6bf1$i0b$[email protected]..
> http://coastal.er.usgs.gov/hurricane...galveston.html
>
> Just registered with news.motzarella.org. This is sort of a test posting.


Wow,,, that was interesting in a clinical kind of way. I have post
pictures here too about the hurricane. No pictures I have seen show the
personal anguish that the people feel for the great losses to their way of
life.
I am glad you found a way to take part in this newsgroup and do you
have to deal with arthritis?

Harv

[Lew]

I lurk a lot, mainly to catch the jokes and to see questions about
prednisone. Had Polymyalgia Rheumatica and have been on prednisone since
2001. Can't quit it without stiffness and pain returning. 5mg enough most of
the time.

Lew

"Harvey R. Stone" <[email protected]> wrote in message
news:YsBFk.2511$[email protected]..
>
> "Lew" <[email protected]> wrote in message
> news:gc6bf1$i0b$[email protected]..
>> http://coastal.er.usgs.gov/hurricane...galveston.html
>>
>> Just registered with news.motzarella.org. This is sort of a test posting.
>
>
> Wow,,, that was interesting in a clinical kind of way. I have post
> pictures here too about the hurricane. No pictures I have seen show the
> personal anguish that the people feel for the great losses to their way of
> life.
> I am glad you found a way to take part in this newsgroup and do you
> have to deal with arthritis?
>
> Harv
>

[Harvey R. Stone]

Hi Lew,,, Well, I have taken prednisone off and on for about 25 years and
I have been able to do pretty well off it completely. For my RA it is a
tool to be used when it gets bad enough or in a flare. I have been under
the care of a Rheumatologist all of that time while taking prednisone. I
hope you are under that care also. As you probably know, pred. can eat
holes in a persons insides and thin their bones. Let me ask you a
question, Does Polymyalgia Rheumatica call for a drug or drugs to control
or modify the disease??? A DMARD ??
Harv

"Lew" <[email protected]> wrote in message
news:gc998q$aqm$[email protected]..
>I lurk a lot, mainly to catch the jokes and to see questions about
>prednisone. Had Polymyalgia Rheumatica and have been on prednisone since
>2001. Can't quit it without stiffness and pain returning. 5mg enough most
>of the time.
>
> Lew
>
> "Harvey R. Stone" <[email protected]> wrote in message
> news:YsBFk.2511$[email protected]..
>>
>> "Lew" <[email protected]> wrote in message
>> news:gc6bf1$i0b$[email protected]..
>>> http://coastal.er.usgs.gov/hurricane...galveston.html
>>>
>>> Just registered with news.motzarella.org. This is sort of a test
>>> posting.
>>
>>
>> Wow,,, that was interesting in a clinical kind of way. I have post
>> pictures here too about the hurricane. No pictures I have seen show the
>> personal anguish that the people feel for the great losses to their way
>> of life.
>> I am glad you found a way to take part in this newsgroup and do you
>> have to deal with arthritis?
>>
>> Harv
>>

[Kelly]

Lew,
Just so you know (before you read Harvey's email) prednisone is the med of
choice for polymyalgia Rheumatica and you are taking a very low dose. That
said it is a good idea to make sure you are getting bone density tests and
are taking calcium and vitamin D (1000 iu a day of that). There are no
dmards (disease modifying anti rheumatic drugs) used for Polymyalgia.

Are you going down in the med really really slowly. You might be able to go
down a bit more that way. My rd (rheumatologist) has me go down 1/2 mg one
day a week. For example this week you might take 4.5 mg on Monday and 5 mg
the rest of the week. If that doesn't bother you too much then the next
week you would take 4.5 on Monday and Wednesday and 5 mg the rest of the
week. Etc. Sometimes if it bothers you only go down .5 mg every 2nd week
giving your body a chance to adjust even further. There may be a time that
you can't go any further. With that dose some rd's are happy to stay there
(depending on age and health too. The body produces more than that
normally - what you are trying to do is jumpstart your body into producing
again.) Check again with your doctor.

I will say make sure also that your daily routine includes a stretching and
exercising routine - even if it is a very very small one to start. That
will do wonders for your joints etc.

http://www.arthritis.ca/types%20of%2...efault.asp?s=1

Here is a copy of what the Arthritis Society in Canada says about
Polymyalgia. As they say you could be on prednisone for years but the idea
is to be on the lowest dose possible with the lowest amount of symptoms of
your disease. It is crucial that you don't go down too far. Apparently
(and this is borne out by statements of people I know who have had it) it
does eventually go away in most people. Learning skills such as time
management, heat/cold etc does help but I am sure you are already doing that
already.

I have RA and have fought the prednisone for the last 12 years. The idea is
to keep it as low as you can without symptoms of your disease. In my case
the prednisone is a damned if you do and damned if you don't. I would be in
bed without it. My doctor is thrilled to have me below 7.5 mg. He would be
content if I were at 5 mg forever.

Take care and stick around! Usually we are a great group (little crankiness
going around at the moment so if you have a question and it isn't answered
try again on another thread. Eventually someone who isn't sick (it is flu
and bronchial stuff season it appears) will be around.

Kelly in BC


"Lew" <[email protected]> wrote in message
news:gc998q$aqm$[email protected]..
>I lurk a lot, mainly to catch the jokes and to see questions about
>prednisone. Had Polymyalgia Rheumatica and have been on prednisone since
>2001. Can't quit it without stiffness and pain returning. 5mg enough most
>of the time.
>
> Lew
>
> "Harvey R. Stone" <[email protected]> wrote in message
> news:YsBFk.2511$[email protected]..
>>
>> "Lew" <[email protected]> wrote in message
>> news:gc6bf1$i0b$[email protected]..
>>> http://coastal.er.usgs.gov/hurricane...galveston.html
>>>
>>> Just registered with news.motzarella.org. This is sort of a test
>>> posting.
>>
>>
>> Wow,,, that was interesting in a clinical kind of way. I have post
>> pictures here too about the hurricane. No pictures I have seen show the
>> personal anguish that the people feel for the great losses to their way
>> of life.
>> I am glad you found a way to take part in this newsgroup and do you
>> have to deal with arthritis?
>>
>> Harv
>>

[DeeTee]

Lew - glad you came out of the bushes. I am currently on 4 on my way back to
3. It is becoming apparent that I may have to stay at 5, too, until the
Rituxan kicks in. I was on 3 before I got cancer and had chemo, then several
operations related to that, etc. My RD gave me several refills for
prednisone bursts (25 mg for 1 wk, then 20, 15, etc.) back to my usual 3.
When I go below 5, my body screams. I'm trying 4 this week, but I can
already feel the pain and stiffness growing.

I agree with Kelly - the biggest problem with prednisone is bone density.
Fortunately, mine is fine according to my last bone scan. Get them
regularly - whatever schedule your RD requires - and you should be okay.

DeeTee

"Lew" <[email protected]> wrote in message
news:gc998q$aqm$[email protected]..
>I lurk a lot, mainly to catch the jokes and to see questions about
>prednisone. Had Polymyalgia Rheumatica and have been on prednisone since
>2001. Can't quit it without stiffness and pain returning. 5mg enough most
>of the time.
>
> Lew
>
> "Harvey R. Stone" <[email protected]> wrote in message
> news:YsBFk.2511$[email protected]..
>>
>> "Lew" <[email protected]> wrote in message
>> news:gc6bf1$i0b$[email protected]..
>>> http://coastal.er.usgs.gov/hurricane...galveston.html
>>>
>>> Just registered with news.motzarella.org. This is sort of a test
>>> posting.
>>
>>
>> Wow,,, that was interesting in a clinical kind of way. I have post
>> pictures here too about the hurricane. No pictures I have seen show the
>> personal anguish that the people feel for the great losses to their way
>> of life.
>> I am glad you found a way to take part in this newsgroup and do you
>> have to deal with arthritis?
>>
>> Harv
>>

[d'huit]

welcome, lew! i have no tips nor advice, just a welcome.<smile>

kate
"Lew" <[email protected]> wrote in message
news:gc998q$aqm$[email protected]..
I lurk a lot, mainly to catch the jokes and to see questions about
prednisone. Had Polymyalgia Rheumatica and have been on prednisone since
2001. Can't quit it without stiffness and pain returning. 5mg enough most of
the time.

Lew

"Harvey R. Stone" <[email protected]> wrote in message
news:YsBFk.2511$[email protected]..
>
> "Lew" <[email protected]> wrote in message
> news:gc6bf1$i0b$[email protected]..
>> http://coastal.er.usgs.gov/hurricane...galveston.html
>>
>> Just registered with news.motzarella.org. This is sort of a test posting.
>
>
> Wow,,, that was interesting in a clinical kind of way. I have post
> pictures here too about the hurricane. No pictures I have seen show the
> personal anguish that the people feel for the great losses to their way of
> life.
> I am glad you found a way to take part in this newsgroup and do you
> have to deal with arthritis?
>
> Harv
>

[Lew]

I have tried tapering prednisone several times, and do well until I get down
to two or three mg. Symptoms, mainly upper arm early morning pain and
stiffness, becomes a problem. Symptoms remain until I go back to 5 or more.
My rheumatologist thinks that my body has pretty well stopped producing
cortisol, or whatever it is that prednisone replaces. He tells me that a
dosage of less than 10mg is probably just providing what my body no longer
produces. I have had bone scans every other year with normal results. I take
1400mg calcium and 1000mg vitamin D daily. The first year, when I was on
larger doses of prednisone, I was in a Fosamax weekly study for prednisone
users. Four full body bone density scans were part of that study. All mine
were normal, but I don't know if I received Fosamax or a placebo. My only
side effect seems to be thin skin. I bleed very easily, often under the
skin. Looks bad but doesn't hurt. I do now carry band-aids for the times
that my skin is broken and I bleed.

By the way. I get my prednisone from a local Sam's Club for just over $5 for
a bottle of 100. I had to get a prescription for 30 filled at a chain
drugstore back in June when my wife was stuck in a Houston hospital for 10
days and I had only carried enough pills for four days for an expected three
day trip. The 30 5mg pills were $11! I did find out later that Walmart would
have charged only $4, or $10 for 90. For some reason getting 100 is cheaper
than 90.

As for DMARDS, or something, only prednisone to treat the symptoms of PMR is
available. NSAIDs do nothing. Most people are able to get off prednisone
after about two or three years with PMR. But not everyone. My PMR symptoms
when first diagnosed were severe. I could not turn over in bed, and trying
to do so was very painful. My wife had to help me get out of bed and dress
me. My shoulders were frozen, and hips almost, early in the morning. By
noontime, most of my symptoms would be gone. I would go to bed with no
problem, and then wake-up wanting to but unable to turn over. After three
days of 20mg prednisone I had no symptoms. It is a miracle drug.

Lew

"Harvey R. Stone" <[email protected]> wrote in message
news:LZVFk.2101$[email protected]..
> Hi Lew,,, Well, I have taken prednisone off and on for about 25 years
> and I have been able to do pretty well off it completely. For my RA it
> is a tool to be used when it gets bad enough or in a flare. I have been
> under the care of a Rheumatologist all of that time while taking
> prednisone. I hope you are under that care also. As you probably know,
> pred. can eat holes in a persons insides and thin their bones. Let me
> ask you a question, Does Polymyalgia Rheumatica call for a drug or drugs
> to control or modify the disease??? A DMARD ??
> Harv
>
> "Lew" <[email protected]> wrote in message
> news:gc998q$aqm$[email protected]..
>>I lurk a lot, mainly to catch the jokes and to see questions about
>>prednisone. Had Polymyalgia Rheumatica and have been on prednisone since
>>2001. Can't quit it without stiffness and pain returning. 5mg enough most
>>of the time.
>>
>> Lew
>>
>> "Harvey R. Stone" <[email protected]> wrote in message
>> news:YsBFk.2511$[email protected]..
>>>
>>> "Lew" <[email protected]> wrote in message
>>> news:gc6bf1$i0b$[email protected]..
>>>> http://coastal.er.usgs.gov/hurricane...galveston.html
>>>>
>>>> Just registered with news.motzarella.org. This is sort of a test
>>>> posting.
>>>
>>>
>>> Wow,,, that was interesting in a clinical kind of way. I have post
>>> pictures here too about the hurricane. No pictures I have seen show
>>> the personal anguish that the people feel for the great losses to their
>>> way of life.
>>> I am glad you found a way to take part in this newsgroup and do you
>>> have to deal with arthritis?
>>>
>>> Harv
>>>
>
>

[Nann Bell]

My mother's PMR wasn't as severe as yours, but as it affected her legs it
severely limited her mobility - not helped by her concurrent serious need for
a TKR! (That leg was actually bowed at that point due to uneven wearing of
her original knee.) but where I was going is that she has had to remain on a
higher dose of pred than you 10 mg, IIRC. You aren't alone in having to
stay on it and in her case it is beyond a replacement level. Mother was down
to 5 for a several months, but so was so miserable she talked her doc into
increasing it again.

--
Nann
remove the Gator cheer to email me
Change everything. Love & forgive.


On Sun, 5 Oct 2008 17:03:10 -0400, Lew wrote
(in message <gcb9t1$nuq$[email protected]>):

> I have tried tapering prednisone several times, and do well until I get down
> to two or three mg. Symptoms, mainly upper arm early morning pain and
> stiffness, becomes a problem. Symptoms remain until I go back to 5 or more.
> My rheumatologist thinks that my body has pretty well stopped producing
> cortisol, or whatever it is that prednisone replaces. He tells me that a
> dosage of less than 10mg is probably just providing what my body no longer
> produces. I have had bone scans every other year with normal results. I take
> 1400mg calcium and 1000mg vitamin D daily. The first year, when I was on
> larger doses of prednisone, I was in a Fosamax weekly study for prednisone
> users. Four full body bone density scans were part of that study. All mine
> were normal, but I don't know if I received Fosamax or a placebo. My only
> side effect seems to be thin skin. I bleed very easily, often under the
> skin. Looks bad but doesn't hurt. I do now carry band-aids for the times
> that my skin is broken and I bleed.
>
> By the way. I get my prednisone from a local Sam's Club for just over $5 for
> a bottle of 100. I had to get a prescription for 30 filled at a chain
> drugstore back in June when my wife was stuck in a Houston hospital for 10
> days and I had only carried enough pills for four days for an expected three
> day trip. The 30 5mg pills were $11! I did find out later that Walmart would
> have charged only $4, or $10 for 90. For some reason getting 100 is cheaper
> than 90.
>
> As for DMARDS, or something, only prednisone to treat the symptoms of PMR is
> available. NSAIDs do nothing. Most people are able to get off prednisone
> after about two or three years with PMR. But not everyone. My PMR symptoms
> when first diagnosed were severe. I could not turn over in bed, and trying
> to do so was very painful. My wife had to help me get out of bed and dress
> me. My shoulders were frozen, and hips almost, early in the morning. By
> noontime, most of my symptoms would be gone. I would go to bed with no
> problem, and then wake-up wanting to but unable to turn over. After three
> days of 20mg prednisone I had no symptoms. It is a miracle drug.

[Harvey R. Stone]

"Lew" <[email protected]> wrote in message
news:gcb9t1$nuq$[email protected]..
>I have tried tapering prednisone several times, and do well until I get
>down to two or three mg. Symptoms, mainly upper arm early morning pain and
>stiffness, becomes a problem. Symptoms remain until I go back to 5 or more.
>My rheumatologist thinks that my body has pretty well stopped producing
>cortisol, or whatever it is that prednisone replaces. He tells me that a
>dosage of less than 10mg is probably just providing what my body no longer
>produces. I have had bone scans every other year with normal results. I
>take 1400mg calcium and 1000mg vitamin D daily. The first year, when I was
>on larger doses of prednisone, I was in a Fosamax weekly study for
>prednisone users. Four full body bone density scans were part of that
>study. All mine were normal, but I don't know if I received Fosamax or a
>placebo. My only side effect seems to be thin skin. I bleed very easily,
>often under the skin. Looks bad but doesn't hurt. I do now carry band-aids
>for the times that my skin is broken and I bleed.
>
> By the way. I get my prednisone from a local Sam's Club for just over $5
> for a bottle of 100. I had to get a prescription for 30 filled at a chain
> drugstore back in June when my wife was stuck in a Houston hospital for 10
> days and I had only carried enough pills for four days for an expected
> three day trip. The 30 5mg pills were $11! I did find out later that
> Walmart would have charged only $4, or $10 for 90. For some reason getting
> 100 is cheaper than 90.
>
> As for DMARDS, or something, only prednisone to treat the symptoms of PMR
> is available. NSAIDs do nothing. Most people are able to get off
> prednisone after about two or three years with PMR. But not everyone. My
> PMR symptoms when first diagnosed were severe. I could not turn over in
> bed, and trying to do so was very painful. My wife had to help me get out
> of bed and dress me. My shoulders were frozen, and hips almost, early in
> the morning. By noontime, most of my symptoms would be gone. I would go to
> bed with no problem, and then wake-up wanting to but unable to turn over.
> After three days of 20mg prednisone I had no symptoms. It is a miracle
> drug.
>
> Lew

If you RD is correct and your body has stopped producing its own steroid,,,
5 mg of prednisone or even a little more than that is nothing to worry
about. You take your calcium and vit D. It is a real shame that you can
not take a DMARD to stop or slow down the frozen shoulders, hips, ect but
that is what makes the difference between PMR and RA..... The price of
Anti-TNF's and other new medicines to control what we have makes you come
out OK in that department with only needing prednisone.
I know what you mean about thin skin. It is just another side effect
of pred. I started taking 40 mg a day to control my fibrosis of the lung
and am down to 25 mg a day with the doctor telling me that he can hear air
going all the way down to the bottom of my lungs now and the amount of pred
is going to keep going down as long as I do not have a turn for the worse
with my breathing. Pred. works for us and we pretty well know the side
effects and we sure know what life is like without it. With food my
friend,,,, take with food.
Harv