Message for pattyann

[damaged]

Apologies for posting a question in the "My story" thread.
Perhaps a mod can move my post (and PattyAnn can respond) here.
Very sorry......
mike

[pattyann]

I have looked and can't locate your msg. I read it the other day ... From what I remember you asked if there was any impirical data. I don't know of any. My rheumy went to Mayo during residency and later. He does research projects for Mayo and NIH all the time. He was the best one I could find here in Tampa. All I am saying is I think he is up to date with his knowledge. He said statin induced ... not me ... didn't know there was such a thing.
I wrote about statin-induced pmr on this site because I had not seen it referenced here. Nor have I seen it in the 2 books I ordered from Dr Graveline. If I have missed it, sorry.
I thought maybe it might help somebody on this site. I'm still learning and reading and reading this site (then I have problems with my memory ... sigh.
PattyAnn

[damaged]

Thank you.
....
pattyann - from "My Statin Story"

"He said Pat, you have statin induced polymyalgia rheumatica (pmr). On Nov 20 2009 he put me on 15mg predazone. Within hours I was feeling so much better."
......

Yes, I had asked how your doctor had come to his conclusion.
I keep hearing stories of doctors that matter-of-factly state that they've come to the same conclusion that your's did.
And I'm always a little shocked that I'm the only one that has an interest in a specific Doctor's name or published peer reviewed paper.

..
pattyann -
"All I am saying is I think he is up to date with his knowledge. He said statin induced ... not me ... didn't know there was such a thing."
"I thought maybe it might help somebody on this site."
..

It certainly would help me.

I've just recently managed, after 8 years, to find (in Chicago) a doctor that will even consider the *Possibility* of "statin induced" anything.....let alone possess knowledge of how to test for it with any certainty.

The last time that I saw my doctor, he said that he'd stopped taking statins as a result of seeing me. But he also says that he has no idea how one would go about specific testing or treatment.

Perhaps you can ask your doctor for details on exactly how he came to his conclusion next time you see him?

Thanks again,
Mike

[pattyann]

Mike,
I see him in late August and I will ask him if there are papers on this. I would like to know, too. Will let you know what he says.
I hope I get reduced to 2mg pred at that time. By catching this (pmr) early he said I "averted" a major disease.
Do you have pmr? What is your story....
PattyAnn

[damaged]

Do you have pmr? What is your story....

..........

I was a very strong and healthy, working carpenter. A cardiologist put me on statins. A few weeks later, I woke up one morning and could hardly walk.

My joints felt very stiff and my muscles ached. I was alarmed because, as a carpenter, I was used to sore muscles and joints...but this was very pronounced.
I "walked it out" in approximately 45 minutes. I felt normal for the rest of the day.

This happened again a few days later and then started to be a regular thing. Any time that I stayed still for more than 1/2 hour or so, I'd "lock up" and the ability to "walk it out" started to diminish.


At the same time that this was happening, I was also getting profoundly tired with any exertion. Simple movement was difficult. An hour or so into the day I'd feel exactly like I'd been working for 14 hours.


I kept complaining to my GP (and the cardiologist), but they both wrote it off to age.


Over the course of 4 years, I threw all meds away at least 6-7 times, but each time my wife would insist that I re-start the meds because the doctors both told her that I would certainly drop dead due to high triglycerides.
I wasn't convinced that the meds were the cause, because, by now, stopping them didn't have any effect on the pain level.
I could feel my muscles tearing each day, as I continued to work. Some days I was afraid that I wouldn't make it from my truck to the house after sitting (driving home) for an hour.


As I searched for a doctor that could tell me what was wrong, each doctor prescribed a different pain med. Vicodin, etc enabled me to work up to 4 hours before my muscles quit completely and I couldn't take another step.

I got a job working every other day, and would lay in bed most of the day that I was off... in order to work 4 hours the following day.

I finally gave up.

Now my muscles are damaged to a point that walking 100 yards cripples me for 2 or 3 days afterwards.
It leaves me feeling exactly like I was cross-country skiing the previous day.

My leg muscles have begun to atrophy, and I have no idea if light excercise will prevent this or do further damage. And I have no one to ask.
I've yet to find a single doctor that will admit to having ever heard of anything more than moderate muscle/joint pain resulting from statin therapy.


So you might imagine how frustrating it is when I hear of a doctor that is said to use terms like "typical statin damage" in a medical report, etc.


Please don't get me wrong......but each and every time I've contacted individuals that mention a doctor that can tell me, with certainty, exactly what has happened to me - it turns out that the doctor wasn't quite as specific as originally stated.

I don't think it's intentional on the part of those that post....and I've gotten more info here that anywhere else. For that, I'm very thankful.

Everyone takes time to offer what's worked (to any degree) for them. Again....I'm very thankful.

But I asked my doctor what he has written in my records.
He said "myopathy of unknown cause".
And as far as what to do?
He hasn't a clue.

Hope springs eternal.

Well....at least until late August.
m.

[vicki]

prednisone only last for a while. After being off it for awhile everything comes back again. I was put on kenelog taper and kenelog shots for yrs. I still have the side effects after over 8 yrs off statins. Yes prednisone helps for awhile, so does a kenelog shot. Both are not good for you to be on too long or too much.

[vicki]

prednisone taper and kenelog shot.... (I meant to say this instead of a kenelog taper.