Jump to content
RemedySpot.com

Newbie

Rate this topic


Guest guest

Recommended Posts

Guest guest

Hi, . Welcome to our little group. My name is Dawn and I was just dx'd.

with PM last Dec. I'm sure once they do the EMG and biopsy, you'll have a

better idea where you stand (with the exception of poor Ed.) Like you, I mostly

suffer from pain and not so much weakness, except for a few odd instances. I

was started on 60 mg. of Prednisone and stayed on that for quite awhile and am

now down to 5 mg. and hope to be off all together in Aug. Don't know if that

will happen though. I also take 15 mg. of Methotrexate once weekly and I feel

that's what gave me the most improvement. I don't suffer from any side affects

from the Methotrexate (nauseau, fatigue, etc), so I'm very fortunate. Good luck

to you and we look forward to hearing more from you.

Dawn

wrote:

> Hi all,

>

> My name is and I have been tentatively dx with pm. I live in the

> Bay Area of CA. I just saw a rheumotologist for the first time yesterday.

> He says that I may have pm, but is not really sure. He wants me to see a

> neurologist and have an EMG test done, then possibly a muscle biopsy. He

> says it could also be ibm or some kind of dystrophy. Evidently I don't have

> a classic case of pm in that my muscles do not feel weak in themselves, just

> painful. (just! LOL) And the muscles involved are mainly in my forearms and

> upper arms, but also involve the wrist and shoulder area.

> My cpk has gone from 495 to 356 in the past several months, which is good

> news, but since I don't know what was normal for me, I don't know how just

> how good.

> I was taking Lipitor and Tricor (both statins) for several years, and

> also Mirapex, for a separate neurological condition. All three of which are

> known to cause muscle problems. The combination of the three may have even

> been worse. Somehow I was under the impression that if muscle pain

> occurred, and the medication was stopped, the muscle pain would also stop.

> It hasn't, even though the medication was stopped over 2 months ago.

> Depending on the test results, the rheumotologist thinks that a medication

> called Methotrexate might help. Or pred. I have taken pred before and was

> not real happy with the side effects, and that was just in the short term.

> Is anyone here taking, or have taken, Methotrexate? What other meds are

> used to treat pm or ibm?

>

> Thanks

>

>

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Hi, . Welcome to our little group. My name is Dawn and I was just dx'd.

with PM last Dec. I'm sure once they do the EMG and biopsy, you'll have a

better idea where you stand (with the exception of poor Ed.) Like you, I mostly

suffer from pain and not so much weakness, except for a few odd instances. I

was started on 60 mg. of Prednisone and stayed on that for quite awhile and am

now down to 5 mg. and hope to be off all together in Aug. Don't know if that

will happen though. I also take 15 mg. of Methotrexate once weekly and I feel

that's what gave me the most improvement. I don't suffer from any side affects

from the Methotrexate (nauseau, fatigue, etc), so I'm very fortunate. Good luck

to you and we look forward to hearing more from you.

Dawn

wrote:

> Hi all,

>

> My name is and I have been tentatively dx with pm. I live in the

> Bay Area of CA. I just saw a rheumotologist for the first time yesterday.

> He says that I may have pm, but is not really sure. He wants me to see a

> neurologist and have an EMG test done, then possibly a muscle biopsy. He

> says it could also be ibm or some kind of dystrophy. Evidently I don't have

> a classic case of pm in that my muscles do not feel weak in themselves, just

> painful. (just! LOL) And the muscles involved are mainly in my forearms and

> upper arms, but also involve the wrist and shoulder area.

> My cpk has gone from 495 to 356 in the past several months, which is good

> news, but since I don't know what was normal for me, I don't know how just

> how good.

> I was taking Lipitor and Tricor (both statins) for several years, and

> also Mirapex, for a separate neurological condition. All three of which are

> known to cause muscle problems. The combination of the three may have even

> been worse. Somehow I was under the impression that if muscle pain

> occurred, and the medication was stopped, the muscle pain would also stop.

> It hasn't, even though the medication was stopped over 2 months ago.

> Depending on the test results, the rheumotologist thinks that a medication

> called Methotrexate might help. Or pred. I have taken pred before and was

> not real happy with the side effects, and that was just in the short term.

> Is anyone here taking, or have taken, Methotrexate? What other meds are

> used to treat pm or ibm?

>

> Thanks

>

>

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Hi, . Welcome to our little group. My name is Dawn and I was just dx'd.

with PM last Dec. I'm sure once they do the EMG and biopsy, you'll have a

better idea where you stand (with the exception of poor Ed.) Like you, I mostly

suffer from pain and not so much weakness, except for a few odd instances. I

was started on 60 mg. of Prednisone and stayed on that for quite awhile and am

now down to 5 mg. and hope to be off all together in Aug. Don't know if that

will happen though. I also take 15 mg. of Methotrexate once weekly and I feel

that's what gave me the most improvement. I don't suffer from any side affects

from the Methotrexate (nauseau, fatigue, etc), so I'm very fortunate. Good luck

to you and we look forward to hearing more from you.

Dawn

wrote:

> Hi all,

>

> My name is and I have been tentatively dx with pm. I live in the

> Bay Area of CA. I just saw a rheumotologist for the first time yesterday.

> He says that I may have pm, but is not really sure. He wants me to see a

> neurologist and have an EMG test done, then possibly a muscle biopsy. He

> says it could also be ibm or some kind of dystrophy. Evidently I don't have

> a classic case of pm in that my muscles do not feel weak in themselves, just

> painful. (just! LOL) And the muscles involved are mainly in my forearms and

> upper arms, but also involve the wrist and shoulder area.

> My cpk has gone from 495 to 356 in the past several months, which is good

> news, but since I don't know what was normal for me, I don't know how just

> how good.

> I was taking Lipitor and Tricor (both statins) for several years, and

> also Mirapex, for a separate neurological condition. All three of which are

> known to cause muscle problems. The combination of the three may have even

> been worse. Somehow I was under the impression that if muscle pain

> occurred, and the medication was stopped, the muscle pain would also stop.

> It hasn't, even though the medication was stopped over 2 months ago.

> Depending on the test results, the rheumotologist thinks that a medication

> called Methotrexate might help. Or pred. I have taken pred before and was

> not real happy with the side effects, and that was just in the short term.

> Is anyone here taking, or have taken, Methotrexate? What other meds are

> used to treat pm or ibm?

>

> Thanks

>

>

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Hi !

My name is Lynn and I have DM. I took Lipitor for 3

years, then last august, I woke one morning with such

achy arm muscles and my adventure with myositis began!

My rheumy also felt the DM was caused by the statin.

My CPK was at 3600. I stopped the statin about a week

before all hell broke loose, and from August to

November, my CPK dropped to 777 on its own. That's

why she felt it was related to statins and I would

return to normal. However, in November, I was started

on 60mg of Prednisone and the CPKs continued to drop

until April...I was down to 10 mg of Prednisone and

7.5 of Methotrexate, 400mg of Plaquenil and a

wonderful CPK of 36!!!

Then the spring sun came out. In one month my CPK

jumped to 1922. My rheumy changed her tune. Firmed

up my diagnosis (she was playing with the idea I had

MCTD/UCTD). Now, I have dermatomyositis for sure.

The Lipitor was the trigger.

It's good to have an EMG. If you hear noise when the

needles are stuck into your muscles, that's a bad

sign...at rest, the muscles should be quiet. A biopsy

is great...it's important that the lab knows how to

prepare it, tho...my doc used the Armed Forces

Pathology Institue and they have an excellent

reputation. You might want to push to have an MRI

done prior to the muscle biopsy so a " good " place is

targetted to extract the tissue sample. Mine was

taken from the upper left thigh (no MRI) and it showed

myositis. The sample takes about 1 month to get back.

I'm feeling good on Methotrexate, even tho I'm not

wild about the drug. I hate Prednisone, can't

convince my rheumy to try the antibiotic protocol, but

I keep trying! Plaquenil is a mild immune suppressant

drug, a member of the quinine family. Others here

will share what they're on.

Welcome to our group...you are going to get lots of

information and support here! Honest...I don't know

what I'd do without all the friends I've made

here...they've become my family. It's hard on us,

cause our friends at home have a hard time

comprehending this disease...

Lynn

--- wrote:

> Hi all,

>

> My name is and I have been tentatively dx

> with pm. I live in the

> Bay Area of CA. I just saw a rheumotologist for the

> first time yesterday.

> He says that I may have pm, but is not really sure.

> He wants me to see a

> neurologist and have an EMG test done, then possibly

> a muscle biopsy. He

> says it could also be ibm or some kind of dystrophy.

> Evidently I don't have

> a classic case of pm in that my muscles do not feel

> weak in themselves, just

> painful. (just! LOL) And the muscles involved are

> mainly in my forearms and

> upper arms, but also involve the wrist and shoulder

> area.

> My cpk has gone from 495 to 356 in the past

> several months, which is good

> news, but since I don't know what was normal for me,

> I don't know how just

> how good.

> I was taking Lipitor and Tricor (both statins)

> for several years, and

> also Mirapex, for a separate neurological condition.

> All three of which are

> known to cause muscle problems. The combination of

> the three may have even

> been worse. Somehow I was under the impression that

> if muscle pain

> occurred, and the medication was stopped, the muscle

> pain would also stop.

> It hasn't, even though the medication was stopped

> over 2 months ago.

> Depending on the test results, the rheumotologist

> thinks that a medication

> called Methotrexate might help. Or pred. I have

> taken pred before and was

> not real happy with the side effects, and that was

> just in the short term.

> Is anyone here taking, or have taken,

> Methotrexate? What other meds are

> used to treat pm or ibm?

>

> Thanks

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Hi !

My name is Lynn and I have DM. I took Lipitor for 3

years, then last august, I woke one morning with such

achy arm muscles and my adventure with myositis began!

My rheumy also felt the DM was caused by the statin.

My CPK was at 3600. I stopped the statin about a week

before all hell broke loose, and from August to

November, my CPK dropped to 777 on its own. That's

why she felt it was related to statins and I would

return to normal. However, in November, I was started

on 60mg of Prednisone and the CPKs continued to drop

until April...I was down to 10 mg of Prednisone and

7.5 of Methotrexate, 400mg of Plaquenil and a

wonderful CPK of 36!!!

Then the spring sun came out. In one month my CPK

jumped to 1922. My rheumy changed her tune. Firmed

up my diagnosis (she was playing with the idea I had

MCTD/UCTD). Now, I have dermatomyositis for sure.

The Lipitor was the trigger.

It's good to have an EMG. If you hear noise when the

needles are stuck into your muscles, that's a bad

sign...at rest, the muscles should be quiet. A biopsy

is great...it's important that the lab knows how to

prepare it, tho...my doc used the Armed Forces

Pathology Institue and they have an excellent

reputation. You might want to push to have an MRI

done prior to the muscle biopsy so a " good " place is

targetted to extract the tissue sample. Mine was

taken from the upper left thigh (no MRI) and it showed

myositis. The sample takes about 1 month to get back.

I'm feeling good on Methotrexate, even tho I'm not

wild about the drug. I hate Prednisone, can't

convince my rheumy to try the antibiotic protocol, but

I keep trying! Plaquenil is a mild immune suppressant

drug, a member of the quinine family. Others here

will share what they're on.

Welcome to our group...you are going to get lots of

information and support here! Honest...I don't know

what I'd do without all the friends I've made

here...they've become my family. It's hard on us,

cause our friends at home have a hard time

comprehending this disease...

Lynn

--- wrote:

> Hi all,

>

> My name is and I have been tentatively dx

> with pm. I live in the

> Bay Area of CA. I just saw a rheumotologist for the

> first time yesterday.

> He says that I may have pm, but is not really sure.

> He wants me to see a

> neurologist and have an EMG test done, then possibly

> a muscle biopsy. He

> says it could also be ibm or some kind of dystrophy.

> Evidently I don't have

> a classic case of pm in that my muscles do not feel

> weak in themselves, just

> painful. (just! LOL) And the muscles involved are

> mainly in my forearms and

> upper arms, but also involve the wrist and shoulder

> area.

> My cpk has gone from 495 to 356 in the past

> several months, which is good

> news, but since I don't know what was normal for me,

> I don't know how just

> how good.

> I was taking Lipitor and Tricor (both statins)

> for several years, and

> also Mirapex, for a separate neurological condition.

> All three of which are

> known to cause muscle problems. The combination of

> the three may have even

> been worse. Somehow I was under the impression that

> if muscle pain

> occurred, and the medication was stopped, the muscle

> pain would also stop.

> It hasn't, even though the medication was stopped

> over 2 months ago.

> Depending on the test results, the rheumotologist

> thinks that a medication

> called Methotrexate might help. Or pred. I have

> taken pred before and was

> not real happy with the side effects, and that was

> just in the short term.

> Is anyone here taking, or have taken,

> Methotrexate? What other meds are

> used to treat pm or ibm?

>

> Thanks

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Hi !

My name is Lynn and I have DM. I took Lipitor for 3

years, then last august, I woke one morning with such

achy arm muscles and my adventure with myositis began!

My rheumy also felt the DM was caused by the statin.

My CPK was at 3600. I stopped the statin about a week

before all hell broke loose, and from August to

November, my CPK dropped to 777 on its own. That's

why she felt it was related to statins and I would

return to normal. However, in November, I was started

on 60mg of Prednisone and the CPKs continued to drop

until April...I was down to 10 mg of Prednisone and

7.5 of Methotrexate, 400mg of Plaquenil and a

wonderful CPK of 36!!!

Then the spring sun came out. In one month my CPK

jumped to 1922. My rheumy changed her tune. Firmed

up my diagnosis (she was playing with the idea I had

MCTD/UCTD). Now, I have dermatomyositis for sure.

The Lipitor was the trigger.

It's good to have an EMG. If you hear noise when the

needles are stuck into your muscles, that's a bad

sign...at rest, the muscles should be quiet. A biopsy

is great...it's important that the lab knows how to

prepare it, tho...my doc used the Armed Forces

Pathology Institue and they have an excellent

reputation. You might want to push to have an MRI

done prior to the muscle biopsy so a " good " place is

targetted to extract the tissue sample. Mine was

taken from the upper left thigh (no MRI) and it showed

myositis. The sample takes about 1 month to get back.

I'm feeling good on Methotrexate, even tho I'm not

wild about the drug. I hate Prednisone, can't

convince my rheumy to try the antibiotic protocol, but

I keep trying! Plaquenil is a mild immune suppressant

drug, a member of the quinine family. Others here

will share what they're on.

Welcome to our group...you are going to get lots of

information and support here! Honest...I don't know

what I'd do without all the friends I've made

here...they've become my family. It's hard on us,

cause our friends at home have a hard time

comprehending this disease...

Lynn

--- wrote:

> Hi all,

>

> My name is and I have been tentatively dx

> with pm. I live in the

> Bay Area of CA. I just saw a rheumotologist for the

> first time yesterday.

> He says that I may have pm, but is not really sure.

> He wants me to see a

> neurologist and have an EMG test done, then possibly

> a muscle biopsy. He

> says it could also be ibm or some kind of dystrophy.

> Evidently I don't have

> a classic case of pm in that my muscles do not feel

> weak in themselves, just

> painful. (just! LOL) And the muscles involved are

> mainly in my forearms and

> upper arms, but also involve the wrist and shoulder

> area.

> My cpk has gone from 495 to 356 in the past

> several months, which is good

> news, but since I don't know what was normal for me,

> I don't know how just

> how good.

> I was taking Lipitor and Tricor (both statins)

> for several years, and

> also Mirapex, for a separate neurological condition.

> All three of which are

> known to cause muscle problems. The combination of

> the three may have even

> been worse. Somehow I was under the impression that

> if muscle pain

> occurred, and the medication was stopped, the muscle

> pain would also stop.

> It hasn't, even though the medication was stopped

> over 2 months ago.

> Depending on the test results, the rheumotologist

> thinks that a medication

> called Methotrexate might help. Or pred. I have

> taken pred before and was

> not real happy with the side effects, and that was

> just in the short term.

> Is anyone here taking, or have taken,

> Methotrexate? What other meds are

> used to treat pm or ibm?

>

> Thanks

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

...I'm Annette and I have DM. I have a dear friend who's husband was

on Lipitor for years and he developed severe muscle pain in his arms and

legs. He went on prednisone and was feeling a little better, but he's still

having trouble with his pain. One can't but suspect that some myositis-like

symptoms are caused by statins, I think. Annette

Re: newbie

Hi !

My name is Lynn and I have DM. I took Lipitor for 3

years, then last august, I woke one morning with such

achy arm muscles and my adventure with myositis began!

My rheumy also felt the DM was caused by the statin.

My CPK was at 3600. I stopped the statin about a week

before all hell broke loose, and from August to

November, my CPK dropped to 777 on its own. That's

why she felt it was related to statins and I would

return to normal. However, in November, I was started

on 60mg of Prednisone and the CPKs continued to drop

until April...I was down to 10 mg of Prednisone and

7.5 of Methotrexate, 400mg of Plaquenil and a

wonderful CPK of 36!!!

Then the spring sun came out. In one month my CPK

jumped to 1922. My rheumy changed her tune. Firmed

up my diagnosis (she was playing with the idea I had

MCTD/UCTD). Now, I have dermatomyositis for sure.

The Lipitor was the trigger.

It's good to have an EMG. If you hear noise when the

needles are stuck into your muscles, that's a bad

sign...at rest, the muscles should be quiet. A biopsy

is great...it's important that the lab knows how to

prepare it, tho...my doc used the Armed Forces

Pathology Institue and they have an excellent

reputation. You might want to push to have an MRI

done prior to the muscle biopsy so a " good " place is

targetted to extract the tissue sample. Mine was

taken from the upper left thigh (no MRI) and it showed

myositis. The sample takes about 1 month to get back.

I'm feeling good on Methotrexate, even tho I'm not

wild about the drug. I hate Prednisone, can't

convince my rheumy to try the antibiotic protocol, but

I keep trying! Plaquenil is a mild immune suppressant

drug, a member of the quinine family. Others here

will share what they're on.

Welcome to our group...you are going to get lots of

information and support here! Honest...I don't know

what I'd do without all the friends I've made

here...they've become my family. It's hard on us,

cause our friends at home have a hard time

comprehending this disease...

Lynn

--- wrote:

> Hi all,

>

> My name is and I have been tentatively dx

> with pm. I live in the

> Bay Area of CA. I just saw a rheumotologist for the

> first time yesterday.

> He says that I may have pm, but is not really sure.

> He wants me to see a

> neurologist and have an EMG test done, then possibly

> a muscle biopsy. He

> says it could also be ibm or some kind of dystrophy.

> Evidently I don't have

> a classic case of pm in that my muscles do not feel

> weak in themselves, just

> painful. (just! LOL) And the muscles involved are

> mainly in my forearms and

> upper arms, but also involve the wrist and shoulder

> area.

> My cpk has gone from 495 to 356 in the past

> several months, which is good

> news, but since I don't know what was normal for me,

> I don't know how just

> how good.

> I was taking Lipitor and Tricor (both statins)

> for several years, and

> also Mirapex, for a separate neurological condition.

> All three of which are

> known to cause muscle problems. The combination of

> the three may have even

> been worse. Somehow I was under the impression that

> if muscle pain

> occurred, and the medication was stopped, the muscle

> pain would also stop.

> It hasn't, even though the medication was stopped

> over 2 months ago.

> Depending on the test results, the rheumotologist

> thinks that a medication

> called Methotrexate might help. Or pred. I have

> taken pred before and was

> not real happy with the side effects, and that was

> just in the short term.

> Is anyone here taking, or have taken,

> Methotrexate? What other meds are

> used to treat pm or ibm?

>

> Thanks

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

...I'm Annette and I have DM. I have a dear friend who's husband was

on Lipitor for years and he developed severe muscle pain in his arms and

legs. He went on prednisone and was feeling a little better, but he's still

having trouble with his pain. One can't but suspect that some myositis-like

symptoms are caused by statins, I think. Annette

Re: newbie

Hi !

My name is Lynn and I have DM. I took Lipitor for 3

years, then last august, I woke one morning with such

achy arm muscles and my adventure with myositis began!

My rheumy also felt the DM was caused by the statin.

My CPK was at 3600. I stopped the statin about a week

before all hell broke loose, and from August to

November, my CPK dropped to 777 on its own. That's

why she felt it was related to statins and I would

return to normal. However, in November, I was started

on 60mg of Prednisone and the CPKs continued to drop

until April...I was down to 10 mg of Prednisone and

7.5 of Methotrexate, 400mg of Plaquenil and a

wonderful CPK of 36!!!

Then the spring sun came out. In one month my CPK

jumped to 1922. My rheumy changed her tune. Firmed

up my diagnosis (she was playing with the idea I had

MCTD/UCTD). Now, I have dermatomyositis for sure.

The Lipitor was the trigger.

It's good to have an EMG. If you hear noise when the

needles are stuck into your muscles, that's a bad

sign...at rest, the muscles should be quiet. A biopsy

is great...it's important that the lab knows how to

prepare it, tho...my doc used the Armed Forces

Pathology Institue and they have an excellent

reputation. You might want to push to have an MRI

done prior to the muscle biopsy so a " good " place is

targetted to extract the tissue sample. Mine was

taken from the upper left thigh (no MRI) and it showed

myositis. The sample takes about 1 month to get back.

I'm feeling good on Methotrexate, even tho I'm not

wild about the drug. I hate Prednisone, can't

convince my rheumy to try the antibiotic protocol, but

I keep trying! Plaquenil is a mild immune suppressant

drug, a member of the quinine family. Others here

will share what they're on.

Welcome to our group...you are going to get lots of

information and support here! Honest...I don't know

what I'd do without all the friends I've made

here...they've become my family. It's hard on us,

cause our friends at home have a hard time

comprehending this disease...

Lynn

--- wrote:

> Hi all,

>

> My name is and I have been tentatively dx

> with pm. I live in the

> Bay Area of CA. I just saw a rheumotologist for the

> first time yesterday.

> He says that I may have pm, but is not really sure.

> He wants me to see a

> neurologist and have an EMG test done, then possibly

> a muscle biopsy. He

> says it could also be ibm or some kind of dystrophy.

> Evidently I don't have

> a classic case of pm in that my muscles do not feel

> weak in themselves, just

> painful. (just! LOL) And the muscles involved are

> mainly in my forearms and

> upper arms, but also involve the wrist and shoulder

> area.

> My cpk has gone from 495 to 356 in the past

> several months, which is good

> news, but since I don't know what was normal for me,

> I don't know how just

> how good.

> I was taking Lipitor and Tricor (both statins)

> for several years, and

> also Mirapex, for a separate neurological condition.

> All three of which are

> known to cause muscle problems. The combination of

> the three may have even

> been worse. Somehow I was under the impression that

> if muscle pain

> occurred, and the medication was stopped, the muscle

> pain would also stop.

> It hasn't, even though the medication was stopped

> over 2 months ago.

> Depending on the test results, the rheumotologist

> thinks that a medication

> called Methotrexate might help. Or pred. I have

> taken pred before and was

> not real happy with the side effects, and that was

> just in the short term.

> Is anyone here taking, or have taken,

> Methotrexate? What other meds are

> used to treat pm or ibm?

>

> Thanks

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

...I'm Annette and I have DM. I have a dear friend who's husband was

on Lipitor for years and he developed severe muscle pain in his arms and

legs. He went on prednisone and was feeling a little better, but he's still

having trouble with his pain. One can't but suspect that some myositis-like

symptoms are caused by statins, I think. Annette

Re: newbie

Hi !

My name is Lynn and I have DM. I took Lipitor for 3

years, then last august, I woke one morning with such

achy arm muscles and my adventure with myositis began!

My rheumy also felt the DM was caused by the statin.

My CPK was at 3600. I stopped the statin about a week

before all hell broke loose, and from August to

November, my CPK dropped to 777 on its own. That's

why she felt it was related to statins and I would

return to normal. However, in November, I was started

on 60mg of Prednisone and the CPKs continued to drop

until April...I was down to 10 mg of Prednisone and

7.5 of Methotrexate, 400mg of Plaquenil and a

wonderful CPK of 36!!!

Then the spring sun came out. In one month my CPK

jumped to 1922. My rheumy changed her tune. Firmed

up my diagnosis (she was playing with the idea I had

MCTD/UCTD). Now, I have dermatomyositis for sure.

The Lipitor was the trigger.

It's good to have an EMG. If you hear noise when the

needles are stuck into your muscles, that's a bad

sign...at rest, the muscles should be quiet. A biopsy

is great...it's important that the lab knows how to

prepare it, tho...my doc used the Armed Forces

Pathology Institue and they have an excellent

reputation. You might want to push to have an MRI

done prior to the muscle biopsy so a " good " place is

targetted to extract the tissue sample. Mine was

taken from the upper left thigh (no MRI) and it showed

myositis. The sample takes about 1 month to get back.

I'm feeling good on Methotrexate, even tho I'm not

wild about the drug. I hate Prednisone, can't

convince my rheumy to try the antibiotic protocol, but

I keep trying! Plaquenil is a mild immune suppressant

drug, a member of the quinine family. Others here

will share what they're on.

Welcome to our group...you are going to get lots of

information and support here! Honest...I don't know

what I'd do without all the friends I've made

here...they've become my family. It's hard on us,

cause our friends at home have a hard time

comprehending this disease...

Lynn

--- wrote:

> Hi all,

>

> My name is and I have been tentatively dx

> with pm. I live in the

> Bay Area of CA. I just saw a rheumotologist for the

> first time yesterday.

> He says that I may have pm, but is not really sure.

> He wants me to see a

> neurologist and have an EMG test done, then possibly

> a muscle biopsy. He

> says it could also be ibm or some kind of dystrophy.

> Evidently I don't have

> a classic case of pm in that my muscles do not feel

> weak in themselves, just

> painful. (just! LOL) And the muscles involved are

> mainly in my forearms and

> upper arms, but also involve the wrist and shoulder

> area.

> My cpk has gone from 495 to 356 in the past

> several months, which is good

> news, but since I don't know what was normal for me,

> I don't know how just

> how good.

> I was taking Lipitor and Tricor (both statins)

> for several years, and

> also Mirapex, for a separate neurological condition.

> All three of which are

> known to cause muscle problems. The combination of

> the three may have even

> been worse. Somehow I was under the impression that

> if muscle pain

> occurred, and the medication was stopped, the muscle

> pain would also stop.

> It hasn't, even though the medication was stopped

> over 2 months ago.

> Depending on the test results, the rheumotologist

> thinks that a medication

> called Methotrexate might help. Or pred. I have

> taken pred before and was

> not real happy with the side effects, and that was

> just in the short term.

> Is anyone here taking, or have taken,

> Methotrexate? What other meds are

> used to treat pm or ibm?

>

> Thanks

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

> Hi , I just moved from Palo Alto to Utah. I also have PM.

I'm going on my third year and not much has changed. This is a great

site with input from those who have the disease, so you get first

hand

information. The main thing is not to become discouraged.

Bo

Hi all,

>

> My name is and I have been tentatively dx with pm. I

live

in the

> Bay Area of CA. I just saw a rheumotologist for the first time

yesterday.

> He says that I may have pm, but is not really sure. He wants me to

see a

> neurologist and have an EMG test done, then possibly a muscle

biopsy. He

> says it could also be ibm or some kind of dystrophy. Evidently I

don't have

> a classic case of pm in that my muscles do not feel weak in

themselves, just

> painful. (just! LOL) And the muscles involved are mainly in my

forearms and

> upper arms, but also involve the wrist and shoulder area.

> My cpk has gone from 495 to 356 in the past several months,

which

is good

> news, but since I don't know what was normal for me, I don't know

how just

> how good.

> I was taking Lipitor and Tricor (both statins) for several

years,

and

> also Mirapex, for a separate neurological condition. All three of

which are

> known to cause muscle problems. The combination of the three may

have even

> been worse. Somehow I was under the impression that if muscle pain

> occurred, and the medication was stopped, the muscle pain would

also

stop.

> It hasn't, even though the medication was stopped over 2 months ago.

> Depending on the test results, the rheumotologist thinks that a

medication

> called Methotrexate might help. Or pred. I have taken pred before

and was

> not real happy with the side effects, and that was just in the

short

term.

> Is anyone here taking, or have taken, Methotrexate? What other

meds are

> used to treat pm or ibm?

>

> Thanks

>

>

Link to comment
Share on other sites

Guest guest

> Hi , I just moved from Palo Alto to Utah. I also have PM.

I'm going on my third year and not much has changed. This is a great

site with input from those who have the disease, so you get first

hand

information. The main thing is not to become discouraged.

Bo

Hi all,

>

> My name is and I have been tentatively dx with pm. I

live

in the

> Bay Area of CA. I just saw a rheumotologist for the first time

yesterday.

> He says that I may have pm, but is not really sure. He wants me to

see a

> neurologist and have an EMG test done, then possibly a muscle

biopsy. He

> says it could also be ibm or some kind of dystrophy. Evidently I

don't have

> a classic case of pm in that my muscles do not feel weak in

themselves, just

> painful. (just! LOL) And the muscles involved are mainly in my

forearms and

> upper arms, but also involve the wrist and shoulder area.

> My cpk has gone from 495 to 356 in the past several months,

which

is good

> news, but since I don't know what was normal for me, I don't know

how just

> how good.

> I was taking Lipitor and Tricor (both statins) for several

years,

and

> also Mirapex, for a separate neurological condition. All three of

which are

> known to cause muscle problems. The combination of the three may

have even

> been worse. Somehow I was under the impression that if muscle pain

> occurred, and the medication was stopped, the muscle pain would

also

stop.

> It hasn't, even though the medication was stopped over 2 months ago.

> Depending on the test results, the rheumotologist thinks that a

medication

> called Methotrexate might help. Or pred. I have taken pred before

and was

> not real happy with the side effects, and that was just in the

short

term.

> Is anyone here taking, or have taken, Methotrexate? What other

meds are

> used to treat pm or ibm?

>

> Thanks

>

>

Link to comment
Share on other sites

  • 10 months later...
Guest guest

Hi , and welcome to the most awesome, supportive and

motivational group on the web-lol. So tell us about yourself!!!!

I'm Meaghan, SAHM of three....12, 6, 2 1/2. I started this journey

at 189 and am down to 134. Trying desperately to loose the last 8

pounds through good food choices, watching portions, exercise and

WATER!!!!!!! Great to have you here, Meaghan

> Hi! I'm and I just joined this group. Look forward

> to " meeting " everyone!

>

Link to comment
Share on other sites

Guest guest

Hi , and welcome to the most awesome, supportive and

motivational group on the web-lol. So tell us about yourself!!!!

I'm Meaghan, SAHM of three....12, 6, 2 1/2. I started this journey

at 189 and am down to 134. Trying desperately to loose the last 8

pounds through good food choices, watching portions, exercise and

WATER!!!!!!! Great to have you here, Meaghan

> Hi! I'm and I just joined this group. Look forward

> to " meeting " everyone!

>

Link to comment
Share on other sites

Guest guest

Hi

Welcome to WLB!!!!! This is a great

group for motivation inspiration and

friendship. I'm sure you will enjoy

it as much as we do.`

Tell us a little about yourself and

your goals so we can get to know you

better.

I'm Sue H. 54, married for 35yrs,2

grown kids no longer at home. I

started my weightloss journey at

175, got down to my goal of 130 and

regained some of it back. I am

currently 155 and struggling to get

back on track. I will do it, just

have to get my old determination

back again, lol.

Jump right in and join the fun.

Hugs

Sue H.

> Hi! I'm and I just joined

this group. Look forward

> to " meeting " everyone!

>

Link to comment
Share on other sites

Guest guest

> Welcome ,

I'm Gena, 38, married almost 20 yrs, have 2 girls 19 and 13 and live in

Alaska. can you tell us a bit about yourself?

Gena

> Hi! I'm and I just joined this group. Look forward

> to " meeting " everyone!

>

>

>

>

Link to comment
Share on other sites

Guest guest

In a message dated 6/3/03 4:42:08 PM Eastern Daylight Time, cmilam@...

writes:

> I know that I need

> to take the weight off slowly and CHANGE my habits in order to keep

> it off, so that's the road I'm taking.

,

You've got the right idea there. I think it's the ONLY way to do this after

so many failed attempts at " diets " !!

Lots of luck to you and hope you're really enjoying your little guy...

Sue R

Link to comment
Share on other sites

Guest guest

In a message dated 6/3/03 4:42:08 PM Eastern Daylight Time, cmilam@...

writes:

> I know that I need

> to take the weight off slowly and CHANGE my habits in order to keep

> it off, so that's the road I'm taking.

,

You've got the right idea there. I think it's the ONLY way to do this after

so many failed attempts at " diets " !!

Lots of luck to you and hope you're really enjoying your little guy...

Sue R

Link to comment
Share on other sites

Guest guest

Hi! Thanks to several of you for the nice welcome :) I look forward

to the group support. I'm going to need it! lol

Well, like I said, I'm . I'm 31 and live in WV with my dh and

our 9 month old little boy. I am trying to lose weight using the WW

points program. This seems to be the one for me. I know that I need

to take the weight off slowly and CHANGE my habits in order to keep

it off, so that's the road I'm taking. I have QUITE a bit of weight

to lose so it's going to be a long road...but I've decided that I

need to change some habits, get some new improved ones and be patient

and not look at the big picture...take it in steps.

Glad to be a part of the group!

>

> > Welcome ,

> I'm Gena, 38, married almost 20 yrs, have 2 girls 19 and 13 and

live in

> Alaska. can you tell us a bit about yourself?

>

> Gena

>

> > Hi! I'm and I just joined this group. Look forward

> > to " meeting " everyone!

> >

> >

> >

> >

>

>

>

Link to comment
Share on other sites

Guest guest

Hi! Thanks to several of you for the nice welcome :) I look forward

to the group support. I'm going to need it! lol

Well, like I said, I'm . I'm 31 and live in WV with my dh and

our 9 month old little boy. I am trying to lose weight using the WW

points program. This seems to be the one for me. I know that I need

to take the weight off slowly and CHANGE my habits in order to keep

it off, so that's the road I'm taking. I have QUITE a bit of weight

to lose so it's going to be a long road...but I've decided that I

need to change some habits, get some new improved ones and be patient

and not look at the big picture...take it in steps.

Glad to be a part of the group!

>

> > Welcome ,

> I'm Gena, 38, married almost 20 yrs, have 2 girls 19 and 13 and

live in

> Alaska. can you tell us a bit about yourself?

>

> Gena

>

> > Hi! I'm and I just joined this group. Look forward

> > to " meeting " everyone!

> >

> >

> >

> >

>

>

>

Link to comment
Share on other sites

Guest guest

,

Well again, nice to meet you. :-) It sounds like you have the right

idea. Changing habits and lifestyle is key! Then you don't just lose

weight but it stays off! We'll be here for you.

Gena :-)

> Hi! Thanks to several of you for the nice welcome :) I look forward

> to the group support. I'm going to need it! lol

> Well, like I said, I'm . I'm 31 and live in WV with my dh and

> our 9 month old little boy. I am trying to lose weight using the WW

> points program. This seems to be the one for me. I know that I need

> to take the weight off slowly and CHANGE my habits in order to keep

> it off, so that's the road I'm taking. I have QUITE a bit of weight

> to lose so it's going to be a long road...but I've decided that I

> need to change some habits, get some new improved ones and be patient

> and not look at the big picture...take it in steps.

> Glad to be a part of the group!

>

Link to comment
Share on other sites

Guest guest

,

Well again, nice to meet you. :-) It sounds like you have the right

idea. Changing habits and lifestyle is key! Then you don't just lose

weight but it stays off! We'll be here for you.

Gena :-)

> Hi! Thanks to several of you for the nice welcome :) I look forward

> to the group support. I'm going to need it! lol

> Well, like I said, I'm . I'm 31 and live in WV with my dh and

> our 9 month old little boy. I am trying to lose weight using the WW

> points program. This seems to be the one for me. I know that I need

> to take the weight off slowly and CHANGE my habits in order to keep

> it off, so that's the road I'm taking. I have QUITE a bit of weight

> to lose so it's going to be a long road...but I've decided that I

> need to change some habits, get some new improved ones and be patient

> and not look at the big picture...take it in steps.

> Glad to be a part of the group!

>

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...