Mayo Statin intolerance clinic

[cjbrooksjc]

Mayo Clinic has established a Statin Intolerance Clinic as part of the Cardiovascular Health Clinic to better diagnose, risk stratify, and treat patients with statin-associated adverse effects.

In addition to evaluating muscle symptoms with a validated questionnaire, standard work-up includes levels of creatine kinase and vitamin D, along with renal and thyroid function testing. When appropriate, genetic testing for statin efficacy and potential toxicity, proximal muscle strength evaluation, and percutaneous outpatient muscle biopsy are important assessment tools.

"Treatment depends on the individual patient and the patient's history of statin intolerance symptoms and may include either changing the dose or type of statin or switching to a nonstatin agent to treat hyperlipidemia," according to Stephen L. Kopecky, M.D., director of the new Statin Intolerance Clinic.

Other treatment options include supplements to reduce the myotoxicity symptoms attributable to impairment of fatty acid oxidation or mitochondrial dysfunction that result from the statin therapy. Patients who are either on statin therapy or have a family history of severe reactions to these agents but have never actually taken a statin drug can be referred to the Statin Intolerance Clinic by calling 507-538-6857.

[pattyann]

Wow! That is great to know. Thanks!
PattyAnn

[damaged]

Thanks Brooks!!
I'll call them tomorrow.

mike

[pattyann]

Damaged (Mike)
Did you call Mayo and what did you find out? Are they any help at all. I haven't called them yet but plan to. Was kind of waiting to hear what you found out.
Thanks
PattyAnn

[pattyann]

Brooks,
Are you looking into this clinic? Where are you in this info?
PattyAnn

[cjbrooksjc]

Sorry, but I am NOT looking into this. I think healing methods are an individual choice, and I choose to pursue my resolution in other ways. I KNOW I have residual damage from statin use, and I am attempting, thru natural methods, to reduce the symptoms on my own. I posted this item so that others who wish to investigate it may do so. If you are interested I suggest you call them; that's where your answers lie.

Best,

Brooks

[damaged]

Damaged (Mike)
Did you call Mayo and what did you find out? Are they any help at all. I haven't called them yet but plan to. Was kind of waiting to hear what you found out.
Thanks
PattyAnn

////////////////



I called Mayo (the Statin Intolerance Clinic) on 6/22 and talked to a girl there (I
suspect she was just a receptionist).
I explained my condition and she said that she'd talk to someone about
helping me, and then call me back.

I asked if they're seeing a lot of people with "statin damage".
Her reply - “Oooh yeeaaah!â€Â

[Jlgoode]

I went to the mayo statin intolerance clinic. They did not offer much. A sheet of paper with a low fat, high carb diet and take Coq10-200 mg three times a day

[David Staup]

a low fat - high carb diet???? boggles the mind

there is absolutely no way convental medicine is going to stop this madness until they are forced legally... sounds to me like they are just setting themselves to cash in on the damage they do

[damaged]

[quote="Jlgoode"]I went to the mayo statin intolerance clinic. They did not offer much. A sheet of paper with a low fat, high carb diet and take Coq10-200 mg three times a day[/quote]

wow....
Thanks for taking the time to register and post.
Not good news...but valuable info.
I sure would like to talk to you about the experience.

mike

[damaged]

I was surprised to get a response today from the Dr. running the clinic.
It appears that they're still in the research stage. At least that's how I interpret it.

........
Dear Sir
Thank you for your note. We have seen patients that take just a few
doses of statin that have developed lifelong muscle damage. There is no
known universally effective treatment. We are looking into various
options of treatment, however, but these are primarily through research
studies.

Have you had a muscle biopsy done? If so, can you send it for our
review? If not it may be helpful to do one to look at the muscle under
the microscope and see what kind of effects have been caused. I would
suggest that you come for an evaluation at some point in the future
since every patient is different - we are doing some genetic studies to
determine if there are patients with genetic predispositions to
statin-induced muscle damage.

We would be glad to set up a time to see you whenever convenient. I am
not keen on phone consultations since this does not allow us to examine
you firsthand, do a muscle biopsy, blood testing, etc, as may be
necessary.

Please let us know what you would like us to do.
Thanks
Stephen L. Kopecky, M.D.

[cjbrooksjc]

The response from Dr. Kopecky seemed encouraging, but the lo fat /high carb diet recommendation is anathema to anyone in our condition, and I am astounded they would offer it as part of a solution! I had hoped this opportunity would be beneficial in providing answers to some of the forum members; now, I'm not sure, even with Dr. Kopecky's note considered, I would make the trek to the clinic at all. Sorry if I misdirected anyone's efforts.

Brooks

[pops]

That's excellent news. That means the medical community is finally paying attention and not ridiculing people who have serious side effects from statins.

That's a huge step in the right direction.

pops

[quote="cjbrooksjc"]Mayo Clinic has established a Statin Intolerance Clinic as part of the Cardiovascular Health Clinic to better diagnose, risk stratify, and treat patients with statin-associated adverse effects.

In addition to evaluating muscle symptoms with a validated questionnaire, standard work-up includes levels of creatine kinase and vitamin D, along with renal and thyroid function testing. When appropriate, genetic testing for statin efficacy and potential toxicity, proximal muscle strength evaluation, and percutaneous outpatient muscle biopsy are important assessment tools.

"Treatment depends on the individual patient and the patient's history of statin intolerance symptoms and may include either changing the dose or type of statin or switching to a nonstatin agent to treat hyperlipidemia," according to Stephen L. Kopecky, M.D., director of the new Statin Intolerance Clinic.

Other treatment options include supplements to reduce the myotoxicity symptoms attributable to impairment of fatty acid oxidation or mitochondrial dysfunction that result from the statin therapy. Patients who are either on statin therapy or have a family history of severe reactions to these agents but have never actually taken a statin drug can be referred to the Statin Intolerance Clinic by calling 507-538-6857.[/quote]