Re: My New Rheumy Appointment

[Guest guest]

Hi ,

I agree with Kathy F. Surgery is usually the last resort, not the first. I

would check out another rheumy if it were me. I've been on methotrexate for

4 years now and that was the first thing my rheumy did in my first visit.

And as far as getting a hip replacement at your age, he was right. My son has

avascular necrosis and at almost 37 years old they say he is too young. He

can hardly walk. Good luck and keep us informed how you are doing. God

Bless.

Janet in Ca

[Guest guest]

Hi ,

Echoing what Kathy wrote below, I don't understand how surgery is THE

treatment for PA. If you have ongoing inflammation from PA, that is

presumably a source of pain and damage. And he's just thinking about pain

meds when he knows you've been in great pain? Doesn't make sense to me.

If you have ongoing PA, how are you going to treat the PA? Why not try

Remicade or Enbrel before surgery, see how cutting inflammation helps with

pain?

I would call him ASAP and if you don't get answers that make sense, switch

rheumy's. And in any case, I would also recommend getting a 2nd opinion

before surgery.

Good luck!

-

> [ ] My New Rheumy Appointment

>

> Hello All,

> I finally had an appointment with a new Rheumy on Wednesday. As I told

> you I've had a bit of a struggle in finding a Rheumy who is aggressive

> enough with my disease.

> Here is basically what he told me. The main areas of pain I have is my

> jaws, neck, right hip and right knee. My knee only hurts because the pain

> is traveling down from my hip, there seems to not be a problem with my

> knee. He told me the problem he has with putting me on big drugs like

> metho and enbrel is that it really will not help the places I have pain

in,

> and the damage they would cause my liver and the side effects are too

> great. All the places I have pain in are permanently damaged, I need

> surgery on my neck and jaws and most definetely a hip replacement. I have

> NO cartilidge left in my right hip joint. But he said that we are going to

> have a hard time finding a surgeon who would do the surgery on me at such

> a young age. And I did give him the argument about baby's and children

> having hip replacements and he said he knows that but it will still be

> rough finding a doctor. He did take more X-rays and he is going to compare

> them to the ones I had a year ago to show

> that I qualify for the surgery. And he is thinking of putting me on pain

> killers since that is really the only thing other than surgery that will

> help me with pain.

> So it was a good visit but a bit disheartening because I know that I

> have a long ways to go before I get any real help.

> Thanks for listening,

>

>

> [Editor's Note: , I'm glad you finally got in to see a rheumy you

> believe is aggressive. It bothers me, however, that he won't put you on

> MTX or Enbrel because while those medications cannot reverse the damage

> you already have, they can help stem the progression of the disease so

> that you don't get PA in places you don't already have it - and that's

> important! In addition, while some people do develop liver problems on

> MTX, the majority of people taking it do NOT. I don't know why he has

> assumed that you will be one of the minority that would. So, for what it

> is worth, I think you would be wise to seek out another rheumy and get a

> second opinion as well as discuss the points I just made with the first

> rheumy. Just my opinion... Kathy F.]

[Guest guest]

Janet,

The doctor does agree with me that I need the surgery and should have it but

he just doesn't know any surgeon that would do it. I have days that I can hardly

walk either, and I have 3 little girls and a job and a house. I can't live like

this, at times I'd rather be dead than keep living in the pain in my hip.

My next option is pain killers, metho won't help my hip. He's not the first

rheumy to tell me that, it's too far gone. I don't want to become dependent on

pain killers, either.

I can't win for losing, and that's the bottom line!

~

cameronparkmom@... wrote:

Hi ,

I agree with Kathy F. Surgery is usually the last resort, not the first. I

would check out another rheumy if it were me. I've been on methotrexate for

4 years now and that was the first thing my rheumy did in my first visit.

And as far as getting a hip replacement at your age, he was right. My son has

avascular necrosis and at almost 37 years old they say he is too young. He

can hardly walk. Good luck and keep us informed how you are doing. God

Bless.

Janet in Ca

[Guest guest]

I disagree . I am 56 I had 3 hip replacements . if you need hip replacement

surgery . do it now . don " t wait and continue to suffer . I have my life back

and best of all --no pain in my hips . I can do whatever I want . My children

were 6 and 8 years old when I got this disease and I was practically

bedridden most of their growing years . I see how hard it was for them now

looking

back . They suffered right along with me . If I knew then whatI know NOw

Iwould have had the replacements . dont wait . life doesn't come around twice .

you know this is not a dress rehearsal and you will be old . live now with your

children . cathy from ma.

[Guest guest]

,

When I was researching my son's disease on line, I read that a doctor at

Duke Univ. in North Carolina is THE expert ( I can't remember his name) in

research for hip replacement. Maybe you could find a web site for this

university

hospital and get some names from a directory. Also, use a search engine and

find a directory for your area Orthopedic doctors and start calling. Give a

list to your rheumy. There has to be a doctor out there somewhere for you.

I'll continue with you in my prayers.

Janet