Re: AP for Polymyalgia Rheumatica ?

[Guest guest]

Polymyalgia rheumatica usually runs it's course in from 2 to 4 years, and

the toxic drugs you were given are to make you feel comfortable while the

disease runs it's course. Usually the prednisone is adjusted down to the

lowest dose possible to maintain a comfort level. If you've been on 10 mg.

of prednisone all this time, you may have a problem weaning of it. There

are several ways you can try.

There appears to be an infectious component to the disease and some doctors

prescribe antibiotics along with the prednisone. Dr. Gabe Mirkin is one of

them. He has a website so you might find some information there.

Taking an antibiotic could possibly shorten the disease process.

Ethel

> I have had Polymyalgia Rheumatica for 3 years now. I was only 76 when

> it started, but now I feel like ninety plus.

> My treatment has been with Prednisone and Methotrexate, currently

> 10mg daily and 20 mg weekly. I can't seem to get weaned off

> Prednisone. By seaching the net I found out about AP (Antibiotic

> treatment) for RA and joined your group.

> Will some kind member volunteer an opinion or case history of

> TREATING POLYMYAGIA RHEUMATICA WITH AP?

> Syd Love

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Syd,

Let me add my layman's opinion to that of Ethel Snooks. It appears that

Polymyalgia Rheumatica (PMR) is another form of RA, so it should respond to

the AP like RA.

The page http://www.hoslink.com/LabResults/MUSCCONN.HTM#polymyalgia

provides this information:

" Polymyalgia rheumatica is a condition that affects people over the age of

50 and more commonly women. The words mean " rheumatic pain in many

muscles " . It is the name given to a condition that results in severe

stiffness and pain in the muscles of the neck, shoulders, lower back,

buttocks and thighs. The muscles of the forearms, hands, calves of the legs

and the feet are usually not affected. In addition, people affected by

polymyalgia rheumatica may experience weariness and loss of energy, night

sweats and fevers, weight loss and depression. These symptoms are often

worse in the morning hampering early morning functions such as rising from

bed, dressing and washing. Often tasks cannot be undertaken until the

afternoon.

Often the onset is dramatic. A previously fit person can retire to bed in

good health and awake to find themselves " cast " with severe stiffness and

pain. In other cases the onset can be more gradual. It may start with some

stiffness in one group of muscles (eg the shoulders) and spread over the

next few weeks to involve the back, buttocks and thighs. If it is not

treated, the severity and site of the symptoms may vary over several months.

The cause of polymyalgia rheumatica is not known. It does only occur in

older people and it may be triggered by virus which alters the way in which

the body's immune system works. It responds well to treatment although for

some people it may develop into a form of rheumatoid arthritis. "

The following web page should be of interest:

http://www.drmirkin.com/morehealth/G154.htm by Gabe Mirkin. " Some doctors

treat polymyalgia with long-term antibiotics, such as doxycycline, in

addition to the prednisone. "

To add a personal note, my RA started suddenly in August 1999, affecting

both joints and muscles. It has responded well to Minocin, which I started

in June 2001, with the effect that I am now in remission.

Sincerely, Harald

At 02:56 AM 11/30/02 +0000, you wrote:

>I have had Polymyalgia Rheumatica for 3 years now. I was only 76 when it

>started, but now I feel like ninety plus. My treatment has been with

>Prednisone and Methotrexate, currently

>10mg daily and 20 mg weekly. I can't seem to get weaned off Prednisone.

>By seaching the net I found out about AP (Antibiotic treatment) for RA and

>joined your group. Will some kind member volunteer an opinion or case

>history of TREATING POLYMYAGIA RHEUMATICA WITH AP?

>Syd Love

[Guest guest]

> Let me add my layman's opinion to that of Ethel Snooks. It appears

that

> Polymyalgia Rheumatica (PMR) is another form of RA, so it should

respond to

> the AP like RA.

My Dad had polymyalgia rheumatica. As Ethel said, it will run it's

course in due time. However, with older people, there is also

concern that they might end up with Giant Cell Arteritis which can

cause one to go blind, so often if one is having headaches, a biopsy

of the temporal artery is done. My Dad was on 80mg of Prednisone,

along with methotrexate. He was flying in loonyville on that dosage,

but it did save his eyesight and over the next year and a half, he

was able to taper off and slowly get off the prednisone. Is doing

fine now. I've never heard of the antibiotic treatment for that,

but suspect it wouldn't hurt anything. Prednisone is pretty much

the cornerstone, unfortunately, for treatment of that disease. The

nice thing about it, is that it ends, unlike RA, which as Geoff has

said in the past, only goes to sleep periodically. Those " sleeps "

are sure nice though. Mine is snoozing at this time too - it

often goes into remission in the dry winter months.

Mark

From Atomic:

giant cell arteritis

n.

Arterial inflammation that often involves the temporal arteries and

may lead to blindness when the ophthalmic artery and its branches

are affected, is characterized by the formation of giant cells, and

may be accompanied by fever, malaise, fatigue, anorexia, weight

loss, and arthralgia called also temporal arteritis

[Guest guest]

> From Atomic:

>

> giant cell arteritis

> n.

> Arterial inflammation that often involves the temporal arteries

and

> may lead to blindness when the ophthalmic artery and its branches

> are affected, is characterized by the formation of giant cells,

and

> may be accompanied by fever, malaise, fatigue, anorexia, weight

> loss, and arthralgia called also temporal arteritis

Thought I might also add this link from the NIH to a description of

Giant Cell Arteritis. Just something one should know about when one

has these immune disorders.

http://www.nlm.nih.gov/medlineplus/ency/article/000448.htm#treatment

Mark

[Guest guest]

Can someone tell me if they have the same symptoms as I do?

I was always a healthy and vital person, doing lots of work, and exercising

and eating right to keep fit, until last June when the pain and disability

began. I was diagnosed in October with MCTD, but will have more tests this

week to try and narrow down the separate diseases.

I started AP in October, and for awhile was doing pretty well. Then in

mid-December things got bad. I won't list all the different flares. It

started with severe swelling and pain in hands and feet (at different

times), resulting in damage to the tendons of my fingers, interfering with

using them, and numbness in my thumbs. Then in January the muscles and

tendons took center stage. I had, and still have, total body aches, making

sleep difficult without pain medicine. Now I hardly ever go out...except to

see the doctor...can't drive, walk well, or do much around the house because

of stiff hands.

I have gone to bed in fair condition and awakened unable to move except with

great pain in all my body. Some days I can see an improvement, then the

next day some new area of muscle will be hurting. It seems that doing even

the lightest work will " pull " a muscle or tendon. Two weeks ago I had

swelling of my thighs near the knees, accompanied by a sunburn-like rash.

The tendons in the backs of my knees were very painful, and bending my legs

was very hard to do. It has gone, now...but I have had muscle pain in my

shoulders and upper arms since then. Also the muscles on the tops of my

feet are sore.

I did a search on this group site for " aching muscles " and came up with this

post of November 30, 2002. It seems to fit what I have been experiencing

for the past month or two. I am nearly 65, so I fit into the age group for

this condition.

Does anyone else have this type of thing happening? What is the best way to

treat it? I am using only Naproxen, and Tetracycline 500 three times a

week. But when things get tough, I'll take a Darvocet or Percocet so I can

sleep.

Joanne

>

> Syd,

>

> Let me add my layman's opinion to that of Ethel Snooks. It appears

> that

> Polymyalgia Rheumatica (PMR) is another form of RA, so it should

> respond to

> the AP like RA.

>

> The page http://www.hoslink.com/LabResults/MUSCCONN.HTM#polymyalgia

> provides this information:

>

> " Polymyalgia rheumatica is a condition that affects people over the

> age of

> 50 and more commonly women. The words mean " rheumatic pain in many

> muscles " . It is the name given to a condition that results in severe

> stiffness and pain in the muscles of the neck, shoulders, lower

> back,

> buttocks and thighs. The muscles of the forearms, hands, calves of

> the legs

> and the feet are usually not affected. In addition, people affected

> by

> polymyalgia rheumatica may experience weariness and loss of energy,

> night

> sweats and fevers, weight loss and depression. These symptoms are

> often

> worse in the morning hampering early morning functions such as

> rising from

> bed, dressing and washing. Often tasks cannot be undertaken until

> the

> afternoon.......

[Guest guest]

> Can someone tell me if they have the same symptoms as I do?

>

.. It has gone, now...but I have had muscle pain in my

> shoulders and upper arms since then. Also the muscles on the tops of my

> feet are sore.

>

> I did a search on this group site for " aching muscles " and came up

with this

> post of November 30, 2002. It seems to fit what I have been

experiencing

> for the past month or two. I am nearly 65, so I fit into the age

group for

> this condition.

>

> Does anyone else have this type of thing happening? What is the

best way to

> treat it? I am using only Naproxen, and Tetracycline 500 three times a

> week. But when things get tough, I'll take a Darvocet or Percocet

so I can

> sleep.

>

> Joanne

My father had polymyalgia rheumatica. You can tough it out and it will

generally go away in a year or so. However, general therapy is heavy

doses of prednisone. Not a cheery thought, but may be essential for

you to be able to move. My father was on about 80mg for a while - not

pleasant - moon face, the works, but recovered from it and is off of

the prednisone. You definitely want to have a rheumie take a look at

you and offer his opinion. Sometimes giant cell arteritis can go

along with this (have you had any headaches , temple pain, vision

problems?) and that is something you definitely don't want to mess

with. Personally, I find Nsaids like spitting in the wind for most of

these diseases, but perhaps they work better for some than for others.

I have not read anything about the tetracyclines treating polymyalgia

rheumatica but perhaps someone can dig that up.

Mark

[Guest guest]

Hi, Mark...

I am pretty certain that I won't be able to tough it out for a year. I

would be losing a big chunk of my now diminishing span of life. So, if when

I see the Rheumatologist in late March he suggests prednisone, or some other

conventional drug, I will probably take it, as long as it isn't for too

long. I'll also continue taking the antibiotics in the hope that they will

work...they can't hurt, anyway. Since I have a mixed connective tissue

diagnosis there may be other things to consider as well.

I agree that NSAIDS are pretty useless, but I figure that they may keep me

from getting swelling in my hands and feet. I don't have headaches, but

have had jaw joint pain in the temporal area several times. My vision

hasn't been too good for many years, but I think it's not connected with any

disease...just old age.

It's good to hear that this is a limited condition...if that's what it is.

Thanks for your comments.

Joanne

>

> > Can someone tell me if they have the same symptoms as I do?

> My father had polymyalgia rheumatica. You can tough it out and it

> will

> generally go away in a year or so. However, general therapy is

> heavy

> doses of prednisone. Not a cheery thought, but may be essential for

> you to be able to move. My father was on about 80mg for a while -

> not

> pleasant - moon face, the works, but recovered from it and is off of

> the prednisone. You definitely want to have a rheumie take a look at

> you and offer his opinion. Sometimes giant cell arteritis can go

> along with this (have you had any headaches , temple pain, vision

> problems?) and that is something you definitely don't want to mess

> with. Personally, I find Nsaids like spitting in the wind for most

> of

> these diseases, but perhaps they work better for some than for

> others.

>

> I have not read anything about the tetracyclines treating polymyalgia

> rheumatica but perhaps someone can dig that up.

>

> Mark