Carla

[Guest guest]

Hi !

I just happened to be checking my messages so I thought I would write

back. I walk with a walker now. As a matter of fact I am going back to

the PT next week to have it modified because I can't use my hands very

well so they are going to add hardware so all I have to do is lift it

with my forearms...does that make sense to you? I don't have any

strength in my hands or wrists. I am getting a raised toilet seat and

have something in my walk-in shower to sit on. My hips are deforming

from the arthritis and the pain is pretty bad. The RA is in all of my

joints including my neck and jaws. The meds I am on right now are:

Prednisone - 5mg twice a day

Imuran - 100mg twice a day

Plaquenil - 200mg twice a day

Vioxx - 25mg a day

Methotrexate - 7.5mg one time a week

Folic acid - 1 mg a day

Arava - 20mg a day

Remicade - 5-7 vials in the IV every 8 weeks

Percocet - 1 every 6 hours for pain

Ambien - 10mg at bedtime for sleep

I am seeing a 2nd Rheumatologist at the end of the month for a second

opinion sense I a have had little success and seem to be getting worse.

Thank you for the prayers!! I must go...it hurts really bad to sit here.

Take care!

Peace!

Carla

-----Original Message-----

From: imkatietoo [mailto:imkatietoo@...]

Sent: Thursday, January 10, 2002 2:25 AM

Rheumatoid Arthritis

Subject: Carla

Hi Carla- I'm sorry to hear that you are having problems enough with

your hips that you may have to have them replaced. I'll give you a

rundown on my experiences but I don't know if they are typical or

not. Because of the high doses of pred. I now have osteoporosis

which is probably why I had to have the first hip replaced. I fx my

hip and I don't know how it happened. It just started huring soooo

bad and I couldn't walk. Went to er & they found fracture, didn't

fall or anything-the thing just broke. This replacement was a

breeze. The post op pain was not as bad as the pain I had been having

in it and I was so glad to have that pain gone. A few months later

my other hip started hurting and I just kept taking more pain pills

until the pain pills were not helping at all ( I was taking 80mg of

oxycontin twice a day and Vicadin extra strength 2 every 4 - 6

hours. I don't know why I waited so long since the first one was

such a success. I think the thought of having 2 artificial hips kind

of frightened me and I was wondering how I would know how to walk on

2 artificial joints. Anyway, the pain got the best of me and I had

it done. Please don't let how this one went scare you off, just talk

to your surgeon before hand about controlling the pain. Since I had

been on such high doses of pain meds before this surgery, the pain

meds after the surgery did nothing to help me with the post op pain.

They have these little buttons you push when you need pain relief and

it delivers what has been programed to give you. I made the nurses

mad because I kept pushing the button every few minutes and finally

they called my surgeon and he added I think it was torodol to

whatever he had been giving me and that helped a lot. I don't know

how much pain meds you are on now but check with your surgeon and

tell him/her if you are on high doses so they can do something

different. Anyway, I didn't get the same results from this surgery

as I did the first and I think its because I waited so long to get it

done. It's been about 8 months since the last one and its a lot

better now and I'm glad I went ahead and had it done now but when I

first had it done I wish that I hadn't had it done. Does this make

sense to you? (lol) The surgeon said the 2nd hip wasn't as stable as

the first one which is why I had a few problems which didn't make a

lot of sense to me because the first was done due to a fx and I would

have thought that one would have been the one to give me more

trouble. I guess that's why he's the dr and I'm not. I'm telling you

this not to frighten you but to inform you so you can maybe take care

of it before. You will be on a walker for awhile and it's not hard

to get use to it. You will need a raised toilet seat which I still

use and something you can use to pick things up off the floor ( I

have what they call a golden retriever. My husband bought it at

Walgreens and it was about $30). The raised toilet seat I think was

only about $15 and I have the one that sits on top of your toilet and

can be removed when others need to use it. I also had to use a device

to help put my socks on because you have to keep your hip straight,

no bending. Make sure you have pillows to sit on if your furniture

sits too low. If you don't have grab bars for the shower, and its a

tub shower you will need help getting in and out of the shower. I

have a shower seat that my mother-in-law gave me that has handles on

it and I was eventually able to start using that to assist me in and

out of the tub shower. A therapist will work with you before you come

home ( I was in the hosp. about 3 or 4 days) and then a therapist

came to my home and worked with me on my exercises and make sure

things were set up properly. I was supposed to have someone home with

me at least the first week but we just couldn't afford my husband

taking off work anymore and he just made sure I could heat my lunch

up in the microwave and attached a basket to the front of my walker

so I could carry things in the basket. I didn't tell the dr or

therapist I was going to be alone because I was afraid they would

make me stay in the hosp longer and I wanted to get back home. I made

sure I could do things for myself and I carried the phone in my

housecoat pocket in case I needed to call someone for help. I had

people calling during the day to check on me. I hope I've helped

answer your questions and not confused you or frightened you. It's

my own fault for waiting too long on the last one. I think I was

waiting for a miracle not realizing that the surgery itself was the

miracle. Let me know what kind of medicines you are taking and I'll

list mine the next time I write. I'll say a special prayer for you

tonight and please keep me informed of your condition. I really am

interested and care. God Bless -

[Guest guest]

I'm so sorry you are having such a rough time. Reading your email

takes me back to the beginning of my RA in 1997. I have come such a

long way since then. I do credit the remicade I've been on since Oct

2000 for how I'm doing now. I guess since the improvements were so

slow I didn't realize how much I have improved. I do know how much

you are suffering and I can't believe you are on all the drugs at

once that is supposed to help us. I was on the Arava before the

remicade & my dr stopped the Arava before starting Remicade. I'm

still limited in a lot of things and I do depend on pain meds to get

me thru the day. I tried without and suffered so much and got tired

of living in bed so now I'm a strong supporter of pain meds if you

need them. Life is so much better for me and people around me since

I started taking them. I got to the point that I didn't care if I

got addicted to them or not JUST TAKE THIS PAIN AWAY, I'M GOING

INSANE. I respect those who don't want to take them but at the same

time I want to tell them to at least try and see how much more you

can do and how much better you feel which in the long run keeps me

active enough that I don't dwindle away to nothing. If your pain

meds are not helping you, please talk to your doctor or even another

doctor until you can get some relief. I can't remember if you told

me how long you have had RA. I think you do need a 2nd opinion. It

seems like you are on too many of the modifying drugs. Beiing on so

many of them does it make you even more suseptable to infections? I

wish I could send you some of my relief and improvements. I remember

when I had it I think in every joint and even my jaws like you. I

sure lost a lot of weight not being able to eat. Once on the

prednisone tho, 20mg for almost 3 years, it didn't take long to pork

out and I do mean pork out. I went from 110 to 165 in about a year.

I'm 5'2 " and my face looked like it belonged on a person that weighed

twice what I did. I've lost some of the weight now that I've got the

prednisone down to 5mg a day. Hoping I'll keep losing on the lower

doses. But at this point, my weight is the least of my worries. The

meds I'm on are: Prednisone 5mg, Paxil 20mg at night, amitriptiline

25mg at night, Oxycontin 40mg 3x a day, Norco 10-325 2 twice a day,

Methotrexate 25mg injection once weekly, Fosomax 70mg weekly( for the

osteoporosis from prednisone) Vioxx daily when pain is super super

bad, multivitamin,mineral daily, 1,000mg Vitamin C daily, 1500mg of

calcium daily, Previcid (for the bleeding ulcer I got from meds)

Hydrea 500 mg every 3 days (for blood disorder) and iron supplement

if anemia gets too bad. A couple of months ago I started taking

Royal Jelly, a supplement from bees and it really helped my fatigue.

At first I didn't think it did that much, but when I didn't take it I

could tell the difference. My husband also takes it and he can tell

a difference if he doesn't remember to take it. I completely

understand if you can't do emails very often. When I have too much

pain I do my emails a little at a time (that's why they are so long I

guess). The only advice I can give you is to try & hang in there.

It took me almost 5 years to get to where I am now (in some people's

eyes that's not very far but it's a long way from living in bed). I

went thru all kinds of meds, the ones you are on even until the

Remicade which I do every 8 weeks. In fact I go in for one this

week. And of course, prayer. I would have never survived without

prayer and I know I had a lot of friends praying for me too. I

remember you in my prayers every night so I hope you feel a little

benefit from them. Please, plese keep me informed when you feel like

it and remember to talk to someone about more pain relief. Once you

find something that works for you (that took a lot of experimenting

too) you'll at least be able to enjoy life again. I hope your 2nd

opinion doctor will know just what to do for you. God Bless-

[Guest guest]

Have your Dr run the tests again. You can have ANA negative disease. When your disease changes, it can become negative or give a false positive. It sounds like RA and Lupus. Dont worry about your ANA- Just your RA factor and or SED rate which is indicative of active disease.

[Guest guest]

another question ? ( how about when your RA factor is always negitive and your SED rate is normal ) and you are still in pain and still getting joint damage ? ??? was informed last visit to my rhumy that I should see a foot surgion for my feet and toes hurting badly now ? dxed ( hammer toe ) ummm why dr when noone will fix my knees ??

later john dbargad@... wrote:

Have your Dr run the tests again. You can have ANA negative disease. When your disease changes, it can become negative or give a false positive. It sounds like RA and Lupus. Dont worry about your ANA- Just your RA factor and or SED rate which is indicative of active disease. __________________________________________________

[Guest guest]

Don't be too concerned about blood work because no test can either prove you have RA or prove you don't have it. There are 7 criteria for diagnosing RA established by the American College of Rheumatology and only one is blood work, another is x-rays, and the other 5 are from patient history and doctor's examination. Any four will alllow a definite diagnosis of RA so there are lots of ways to have RA without it showing up in the blood. God bless.

----- Original Message -----

From: dbargad@...

Rheumatoid Arthritis

Sent: Sunday, May 22, 2005 1:29 AM

Subject: Re: Carla

Have your Dr run the tests again. You can have ANA negative disease. When your disease changes, it can become negative or give a false positive. It sounds like RA and Lupus. Dont worry about your ANA- Just your RA factor and or SED rate which is indicative of active disease.