Re: Trying to decide if I should look for another rheumy

[Guest guest]

I would look for another doctor, . I think you said you were in St.

Louis. Maybe someone in or near St. Louis has a good rheumatologist and

they'll mention who it is. You could send a separate post with the request

in the subject line in case members in your area don't read this discussion.

The American College of Rheumatology also has a geographical listing of

members. Some information about each member is listed, too.

http://www.rheumatology.org/directory/geo.asp?aud=mem

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Trying to decide if I should look for another rheumy

> Hello,

>

> I am learning so much from all of you. I am just really trying to

> figure out what I should do though. I am seeing a rheumatologist who

> dignosed me as having RA and OA but my RA factor is not positive. I

> am taking prednisone 17.5 mg a day, folic acid, methatrexate 20mg a

> week and about 1500 of neurontin a day. X-rays show damage in my knee

> (the other was replaced already), both hips, both wrists, both thumbs

> and index fingers, and my neck and back. I seem to not be able to get

> the prednisone dose any lower. My doctor suggested I drop the dose

> 2.5 mg every 3 weeks. I can get down to 10mg, but then I hurt so much

> that I can't use the computer or drive which are both necessary for

> my job. Anytime I ask my rheumatologist for other medicine for my

> pain she tells the nurse to tell me to up my prednisine. I really

> want to try other medicines and get off the steroids. I have been on

> them for over a year.I have gained 60 pounds and keep swelling so

> much. I am so uncomfortable. I upped the dose back to 17.5 a week ago

> because of pain. Now I am having trouble breathing, just feel like I

> can't get enough air even though I am breathing deeply.

>

> I don't know if I should try to push this doctor or try to find one

> who will communicate with me better. The one I see only talks to me

> through her nurse and sees me every 6 months. I do get blood drawn

> every 6 weeks and all she'll ever say is things look OK. I am just

> not very assertive with doctors. I just hate how I feel.

>

> If I move on, how do I find a good one. I have a lot of options but

> know nothing about any of them. Did you find your doctors by hit and

> miss? I am just getting s frustrated.

>

>

[Guest guest]

,

I'd be concerned that your doctor is relying on prednisone to treat

your pain

instead of trying to adjust your DMARDS or give you pain medication.

Has he suggested adding other meds such as one of the biologicals -

Enbrel,

Humira, etc? I would go to another rheumatologist. You are paying to

see the doctor, NOT his nurse. It's not easy to be assertive with

doctors.

Just remember that you PAY him to take care of you and he's not doing

his job, it's time to move on.

a

On Jun 4, 2006, at 12:19 AM, kuehnlej wrote:

> Hello,

>

> I am learning so much from all of you. I am just really trying to

> figure out what I should do though. I am seeing a rheumatologist who

> dignosed me as having RA and OA but my RA factor is not positive. I

> am taking prednisone 17.5 mg a day, folic acid, methatrexate 20mg a

> week and about 1500 of neurontin a day. X-rays show damage in my knee

> (the other was replaced already), both hips, both wrists, both thumbs

> and index fingers, and my neck and back. I seem to not be able to get

> the prednisone dose any lower. My doctor suggested I drop the dose

> 2.5 mg every 3 weeks. I can get down to 10mg, but then I hurt so much

> that I can't use the computer or drive which are both necessary for

> my job. Anytime I ask my rheumatologist for other medicine for my

> pain she tells the nurse to tell me to up my prednisine. I really

> want to try other medicines and get off the steroids. I have been on

> them for over a year.I have gained 60 pounds and keep swelling so

> much. I am so uncomfortable. I upped the dose back to 17.5 a week ago

> because of pain. Now I am having trouble breathing, just feel like I

> can't get enough air even though I am breathing deeply.

>

> I don't know if I should try to push this doctor or try to find one

> who will communicate with me better. The one I see only talks to me

> through her nurse and sees me every 6 months. I do get blood drawn

> every 6 weeks and all she'll ever say is things look OK. I am just

> not very assertive with doctors. I just hate how I feel.

>

> If I move on, how do I find a good one. I have a lot of options but

> know nothing about any of them. Did you find your doctors by hit and

> miss? I am just getting s frustrated.

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

, I had been trying to get off Prednisone because everybody told me

I needed to. I got down from 10 mg to 6 mg before the pain and other

complications that weren't Prednisone related showed up. I learned that I

can go lower than the dose I'm on, but am not going to lower it until

there's good reason to do so. I've said before that the thing that's

important to me is " Quality " of life, and 10 mg Prednisone per day gives me

that. I'm also taking 25 mg injected MTX per week, 3 mg Folic Acid per day,

500 mg Lodine twice a day, and a few other meds for various reasons.

If you were able to get down to 10 mg, try to stay there and see if your

body adjusts. If it does, that's great! If it doesn't, find what makes it

work for you as long as it's not damaging you. I'm not a medical person, so

I'm not prescribing more than a philosophy that works for me. I'll probably

get an inbox of hate-mail, but the weight gain makes you feel miserable

because your body isn't used to it. That's the way it was for me but I only

gained about 20 pounds and kept it for about 18 months. Now, I'm back to my

normal weight but it's not that good because of all the muscle tone I've

lost and the watermelon I seem to have swallowed whole.

Dennis

[ ] Trying to decide if I should look for another rheumy

> Hello,

>

> I am learning so much from all of you. I am just really trying to

> figure out what I should do though. I am seeing a rheumatologist who

> dignosed me as having RA and OA but my RA factor is not positive. I

> am taking prednisone 17.5 mg a day, folic acid, methatrexate 20mg a

> week and about 1500 of neurontin a day. X-rays show damage in my knee

> (the other was replaced already), both hips, both wrists, both thumbs

> and index fingers, and my neck and back. I seem to not be able to get

> the prednisone dose any lower. My doctor suggested I drop the dose

> 2.5 mg every 3 weeks. I can get down to 10mg, but then I hurt so much

> that I can't use the computer or drive which are both necessary for

> my job. Anytime I ask my rheumatologist for other medicine for my

> pain she tells the nurse to tell me to up my prednisine. I really

> want to try other medicines and get off the steroids. I have been on

> them for over a year.I have gained 60 pounds and keep swelling so

> much. I am so uncomfortable. I upped the dose back to 17.5 a week ago

> because of pain. Now I am having trouble breathing, just feel like I

> can't get enough air even though I am breathing deeply.

>

> I don't know if I should try to push this doctor or try to find one

> who will communicate with me better. The one I see only talks to me

> through her nurse and sees me every 6 months. I do get blood drawn

> every 6 weeks and all she'll ever say is things look OK. I am just

> not very assertive with doctors. I just hate how I feel.

>

> If I move on, how do I find a good one. I have a lot of options but

> know nothing about any of them. Did you find your doctors by hit and

> miss? I am just getting s frustrated.

>

>

[Guest guest]

Hi :

Yes, it does sound like another rheumy is necessary

for you. If your breathing does not get any better,

see a doctor or go to the E.R. - breathing problems

are nothing to play around with, and methotrexate has

been found to cause problems with lungs. Don't

hesitate on that one, okay?

As far as finding a good rheumy, where are you

located? If you let us know where you live, the

largest city near you, then maybe one of us here lives

in an area nearby and can recommend one. Otherwise,

you can try to go to the Arthritis Foundation internet

site, and I believe there are rhuemys listed there

too.

Any doctor who sees you only every six months, and

does not do anything other than prescribe upping your

Prednisone when you have more pain, is not treating

you properly. You might need another DMARD added to

the Mtx or the Mtx changed entirely, and if you want

to get off the Pred then you need to get the disease

process under control so that there is less pain, and

you won't need the Pred. However, some people never

completely get off the Pred as it is the only thing

that works for them.

Good luck with finding a new rheumy - and get that

breathing problem checked out asap!

Kathe in CA

--- kuehnlej <kuehnlej@...> wrote:

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