Fw: Relapsing Polychondritis

[Guest guest]

Dear Group, I also wanted to forward this response I just received from a

doctor I do not know that I emailed which you will see. It's just good to

know you can get a response from a pro like this. Her website is very good.

Please read on.

Re: Relapsing Polychondritis

> Hello,

> This is a rare disease and I don't have experience with it - it is not

> usually considered a metabolic bone disease, as far as I know without

> doing more reading about it. I also do not know Dr. Buckner personally.

> I hope you and your physicians will find a way to stablize the disease.

>

> ----------

> M. Ott, MD

> Associate Professor, Medicine

> http://faculty.washington.edu/smott

> Osteoporosis web site: http://courses.washington.edu/bonephys

>

>

>

> > Dear Dr. Ott,

> >

> > I am a newly diagnosed Relapsing Polychondritis (RP) patient who is

working with a team of doctors in Cincinnati, OH to control this disease and

hopefully put it into remission. Since this is a relatively rare disease, I

am coming to find that each doctor is having various amounts of knowledge,

and/or opinions regarding the many different topics that have already come

up in the 3 months since I've been diagnosed.

> >

> > The primary reason the I am writing to you is, in my own search for

information, I came across your web page by looking for a description of the

components of bone. I have been having increasing pain in areas of facial

bones that are not near joints, for example, around eye sockets, along

cheekbones and jawbones.I have already had nasal cartilage damage with

associated pain, but this doesn't seem to be near areas of significant

cartilage, such as that.I have one doctor (my Rheumatologist) who says there

is no cartilage in those areas, so RP could not be the cause of that pain.

But I have another doctor (my GP) who says there is cartilage in all bone. I

am hoping you can help me settle this debate.

> >

> > Relapsing Polychondritis is a complex disease involving an autoimmune

response directed against cartilage, of which I don't know if you are even

familiar yourself. But any insight you can give me would be so much

appreciated. I even found out that my own family orthopedic doctor had never

even heard of this disease! I understand that Dr. Jean Buckner at the

Virginia Mason Research Center in Seattle is conducting a study on RP. I

also thought that since you are affiliated with the Univ. of WA, you may

have heard about this, or know of Dr. Buckner. I have not yet contacted her

personally.

> >

> > Thank you for taking the time to read this, and any response would be

greatly appreciated. Thanks also for your web site. Since I am also facing

the real possibility of steroid-induced osteoporosis, along with that of HRT

after surgical menopause, your information is proving to help me in many

ways. I wish you all the best in your endeavors.

> >

> > Sincerely,

> >

> > Carol Giordano

> > email: mgiordano@...

> >

> >

>