To Rick; Re: Dr. Whitman in NJ - Anyone go to him?

[Guest guest]

Thanks . Like I stated previously, we know that getting off of the

prednisone is probably not likely but we do want to lower the dose. We will have

only dropped from 40 to 30 by the time we see Dr. W. Then we will have someone

who knows what's going on and what to do on our team. Thanks again.

Rick

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> > > > >

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> > > > > I would imagine that Dr. W does what he thinks each patient

> > > > > requires....

> > >

> > > > > He started me on minocin 100 mg, 2x a day and after several months, he

> > >

> > > > > had me do oral clindymyacin every month...for 7 days....

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> > > > >

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> > > > > I have seen Dr W now for over 10 yrs....he and his office will work

> > > > > with

> > >

> > > > > you over the phone, computer and he works well with other DRs....he

> > > > > has

> > >

> > > > > sent me home with a script for labs to be done here at home and has

> > > > > sent

> > >

> > > > > me follow up letters.

> > >

> > > > >

> > >

> > > > > Dr W has not tried to push the standard meds with me...in fact....when

> > >

> > > > > my lungs were attacked via the SD and RA....my lung Dr here was

> > > > > pushing

> > >

> > > > > a standard chemo drug that has not been studied for my lung disease,

> > > > > OB,

> > >

> > > > > but would have been paid for by my insurance. This drug, cytoxin, has

> > >

> > > > > been known to cause, down the road, bladder cancer, liver cancer and

> > >

> > > > > lymphoma...Dr W. told me to fight for another form of chemo,

> > >

> > > > > photopheresis, one that has been tested on my lung disease and one

> > > > > that

> > >

> > > > > works and has ZERO side effects...It also costs about $13,000 a

> > >

> > > > > treatment, consisting of 2 days in a row...it is not considered toxic

> > >

> > > > > because it does not give me anything...it cleans my blood..Dr. Whitman

> > >

> > > > > wrote letters for me in support of this treatment and helped fight my

> > >

> > > > > insurance company so I could get a trial treatment. I received the

> > > > > trial

> > >

> > > > > treatment and my lung disease improved...I then received this

> > > > > treatment

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> > > > > for 3.5 yrs and my lungs are stable. The year and a

> > >

> > > half I spent fighting my insurance company for this form of chemo took a

> > >

> > > toll on my lungs, but Dr Whitman fought right along beside me for this

> > >

> > > treatment for me.

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> > > > >

> > >

> > > > > I see Dr. Whitman once a year and I go very prepared. A list of my

> > >

> > > > > symptoms, current copies of all labs and tests that have been done and

> > > > > a

> > >

> > > > > list of my meds and supplements and a list of questions... We spend an

> > >

> > > > > intense hour going over problems during which time DR. Whitman takes

> > >

> > > > > copious notes and does a physical exam...I leave to head back to

> > >

> > > > > Cincinnati with a plan and lab scripts to take with me and he gives me

> > > > > a

> > >

> > > > > copy of his notes to take back as well. I would love to find a rheumy

> > >

> > > > > here that will work with him.....as Dr. Whitman is certainly willing

> > > > > to

> > >

> > > > > work with all my DRs...but so far, my last rheumys....got " pissy "

> > > > > about

> > >

> > > > > Dr. W calling the shots...all the local rheumys want to do was sit and

> > >

> > > > > take notes and chart my decline...I wanted to find a Dr to work with

> > > > > Dr.

> > >

> > > > > W...and these guys here felt it was somehow demeaning to them...so I

> > >

> > > > > fired all my local rheumies! After almost 10 yrs of this disease, I

> > > > > have

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> > > > > fired most of them here in town...I see a

> > >

> > > new

> > >

> > > one in a week...I will present him with the paperwork regarding my form of

> > >

> > > the disease....and let him know that DR. W is my rheumy, I see him once a

> > >

> > > year...DR W calls the shots...and inquire if this new rheumy is willing to

> > >

> > > work with him...if he is going to get pissy about doing the labs DR W

> > >

> > > wants....then I will be OUTTA there!! Dr. Whitman is the physician that

> > > has

> > >

> > > worked to help me, researched actively what I needed to solve each

> > >

> > > crisis...and I have been stable, thanks to him, for several years...I

> > > should

> > >

> > > also thank the Drs that Dr. Whitman referred me to at Yale as well. Dr.

> > >

> > > Whitman wanted me to see Dr. Mike Girardi at Yale, he runs the

> > > photopheresis

> > >

> > > unit there..Dr. Girardi at Yale and Dr. Rick Edelson (who developed

> > >

> > > photopheresis at Yale ) also got behind me and sent letters and DR.

> > > Girardi

> > >

> > > spoke, via telephone at my insurance hearing in support of my treatment...

> > >

> > > ..Funny, I cannot get most of the local rheumies to even call me back and

> > >

> > > give me

> > >

> > > reports on my lab tests....but my out of town physicians are the

> > > best...they

> > >

> > > return calls, answer questions, send emails, write letters in support of

> > > my

> > >

> > > treatment, etc..etc...

> > >

> > > > >

> > >

> > > > > In short, DR. Whitman is well worth the trip. Come prepared though, he

> > >

> > > > > is very thorough. I would imagine the diseases are different with

> > > > > every

> > >

> > > > > patient, but yes, Dr. Whitman does tweak the protocol as needed. And

> > > > > he

> > >

> > > > > is open....I can ask him about anything and I respect his opinion

> > >

> > > > > enormously, he may be 1 2 hours away but he has not ever failed

> > > > > me....I

> > >

> > > > > always tell people I refer, he is not real touchy, feely....if you

> > > > > want

> > >

> > > > > that...he is not your guy....however, he is to the point, brilliant

> > > > > and

> > >

> > > > > gets it done.

> > >

> > > > >

> > >

> > > > > Hope this helps, Debbie in Cincinnati

> > >

> > > > > rheumatic Dr. Whitman in NJ - Anyone go to him?

> > >

> > > > >

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> > > > >

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> > > > > I am considering switching AP doctors and wanted to get some opinions

> > > > > on

> > >

> > > > > Dr. Whitman.. I have been on AP for about 10 months for RA and I'm

> > > > > doing

> > >

> > > > > good but wondering if I could be doing better..

> > >

> > > > >

> > >

> > > > > I have read that Dr. Whitman is one of the more experienced AP docs

> > > > > out

> > >

> > > > > there.. I am around 6 hours away from him so it wouldn't be an easy

> > > > > trip

> > >

> > > > > but if it was worthwhile I would definitely do it..

> > >

> > > > >

> > >

> > > > > For those that go to him...

> > >

> > > > >

> > >

> > > > > 1. What is his standard AP treatment? Is it Minocin M-W-F Bid?

> > >

> > > > >

> > >

> > > > > 2. Being I am over 6 hours away.. Does he work with you knowing it's

> > > > > far

> > >

> > > > > away? IE: Over the phone appts, tweak protocol w/out seeing you, order

> > >

> > > > > blood tests and review them via fax, etc?

> > >

> > > > >

> > >

> > > > > 3. I understand he is a rheumy as well? Does he try to push the

> > > > > standard

> > >

> > > > > meds?

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> > > > >

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> > > > > 4. Does he introduce other abx if Minocin isn't fully working (ie:

> > > > > tweak

> > >

> > > > > the protocol)?

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> > > > >

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> > > > > Thanks for any info!

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> > > > >

> > >

> > > > > Tom

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