HealthBoards

HealthBoards (http://www.healthboards.com/boards/)
-   Arthritis (http://www.healthboards.com/boards/arthritis/)
-   -   Old Pro with RA (http://www.healthboards.com/boards/arthritis/149479-old-pro-ra.html)

meghurtz 02-12-2004 09:24 AM

Old Pro with RA
 
Hey everyone! I just wanted to let you all know that Im an "ols pro" at Arthritis. Ive had Rheumatoid Arthritis for a few years and was diagnosed when I was 27. Ive been on Celebrex, Vioxx, Bextra, Prednisone, Methotrexate, and now on Enbrel. Ive been to every kind of doctor imaginable and would be more than happy to answer questions for you about RA. I'll try to check the boards on a regular basis,

~Meghurtz

KenK 02-12-2004 05:57 PM

Re: Old Pro with RA
 
Howdy Megahurtz, (I like that one) I too am an old pro in some respects but my RA took me down a different road. I was 20 when it hit me like a freight train and now at 42 I have quite a bit of damage as I wasn't properly diagnosed for the first 10 years of the disease. To compound the matter, I allowed myself to get hooked on narcotic pain killers and now I must find some non-narcotic alternatives. Any suggestions? Thanks

Ladywolfe 02-12-2004 06:42 PM

Re: Old Pro with RA
 
Hi there - glad there are a couple of boardies here that are so knowledgeable on RA. :wave:

This is gonna be long...so I'm apologizing in advance.

I was diagnosed 2 1/2 years ago with RA. At the time, I was in the process of moving from one city to another one 2 1/2 hours away. My GP at the time told me to take Ibuprofen for inflammation, and to send for my records when I got settled in.

Six months after the move, I told my new (then ) GP about the DX of RA. She said, "well, you seem to be in remission - if it flares back up, we'll address it then." Oooookay...I was as dumb as a stick at the time - I thought, what with her being a 'dr' and all, she knew what she was talking about.
I ended up leaving her a year later and going to another GP. I thought this guy had his stuff together. My RA did stay in remission for almost 2 years. However, during the past 4 months, I have been in total agony. I can harldy walk, every joint (except my shoulders) in my body is hurting, I am tired all of the time - I just feel like I'm 100 years old.

I told my new Dr this. He did reflex and movement tests on my joints, made the comment that the left side of my body seems more 'out of whack' than my right (it IS giving me more pain than the right side right now) and ordered blood tests.
What he ordered was an ESRand a CRP screen. The ESR test came back normal, but the CRP came back positive. Like I need a peice of paper to tell me I have inflammation in my body? sheesh.

I got these tests done on Monday. I called his office on Tuesday - he was out -they assured me he would call Wed -he didn't. Wed -they said he would call today - he didn't. I had left the message with his nurse, that I wanted to talk to him about further testing and treatment options - she said she would let him know.
tonite -around 6:00 - I get a call from his nurse (not him) telling me "dr has called you in a prescription for Methotrexate - and he wants to see you again in 2 months.

I was [COLOR=DarkRed]FURIOUS [/COLOR] :o

I said to her "I do NOT want to just be put on meds without talking to the doctor - I want to know the extent of damage done to my knees (they pop, crack, ache - as do my ankles) -and I want to discuss going on a newer med than the metho...I've lost enough hair without going on something that could cause it to fall out more."
She replied "I'll have dr call you Monday -he's off tomorrow"

:::banging head against wall::: ouchie

I then called the only rheumatologist here in town - luckily they had hours till 8:00 tonite. I spoke with a receptionist, who transferred me to a nurse. She asked me if my GP had repeated my RA factor tests,ANA tests , or ordered any xrays of my joints. I wanted to cry - finally someone listneing to me. I told her no he had not. She suggested I not go on the metho until I had saw the rheumatologist.

The earliest they could get me in was on the 25th of this month, but I"ve been in pain for so long - I can wait another couple of weeks.

Is it common for a GP to try to treat something as serious as RA, especially not ordering any other tests than the SED rate and CRP screen?

I have been doing so much reading in the past 4 months on this disease - and it makes me mad to realize that I should have been getting treatment long ago and have not.

My GP will probably get upset that I went to the Rheumatologist instead of letting him treat me - but this is my health we are talking about.

Thanks for letting me sound off. Everyone have a safe and warm weekend.

HUGS

KenK 02-13-2004 09:38 AM

Re: Old Pro with RA
 
[QUOTE=Ladywolfe]Hi there - glad there are a couple of boardies here that are so knowledgeable on RA. :wave:

This is gonna be long...so I'm apologizing in advance.

I was diagnosed 2 1/2 years ago with RA. At the time, I was in the process of moving from one city to another one 2 1/2 hours away. My GP at the time told me to take Ibuprofen for inflammation, and to send for my records when I got settled in.

Six months after the move, I told my new (then ) GP about the DX of RA. She said, "well, you seem to be in remission - if it flares back up, we'll address it then." Oooookay...I was as dumb as a stick at the time - I thought, what with her being a 'dr' and all, she knew what she was talking about.
I ended up leaving her a year later and going to another GP. I thought this guy had his stuff together. My RA did stay in remission for almost 2 years. However, during the past 4 months, I have been in total agony. I can harldy walk, every joint (except my shoulders) in my body is hurting, I am tired all of the time - I just feel like I'm 100 years old.

I told my new Dr this. He did reflex and movement tests on my joints, made the comment that the left side of my body seems more 'out of whack' than my right (it IS giving me more pain than the right side right now) and ordered blood tests.
What he ordered was an ESRand a CRP screen. The ESR test came back normal, but the CRP came back positive. Like I need a peice of paper to tell me I have inflammation in my body? sheesh.

I got these tests done on Monday. I called his office on Tuesday - he was out -they assured me he would call Wed -he didn't. Wed -they said he would call today - he didn't. I had left the message with his nurse, that I wanted to talk to him about further testing and treatment options - she said she would let him know.
tonite -around 6:00 - I get a call from his nurse (not him) telling me "dr has called you in a prescription for Methotrexate - and he wants to see you again in 2 months.

I was [COLOR=DarkRed]FURIOUS [/COLOR] :o

I said to her "I do NOT want to just be put on meds without talking to the doctor - I want to know the extent of damage done to my knees (they pop, crack, ache - as do my ankles) -and I want to discuss going on a newer med than the metho...I've lost enough hair without going on something that could cause it to fall out more."
She replied "I'll have dr call you Monday -he's off tomorrow"

:::banging head against wall::: ouchie

I then called the only rheumatologist here in town - luckily they had hours till 8:00 tonite. I spoke with a receptionist, who transferred me to a nurse. She asked me if my GP had repeated my RA factor tests,ANA tests , or ordered any xrays of my joints. I wanted to cry - finally someone listneing to me. I told her no he had not. She suggested I not go on the metho until I had saw the rheumatologist.

The earliest they could get me in was on the 25th of this month, but I"ve been in pain for so long - I can wait another couple of weeks.

Is it common for a GP to try to treat something as serious as RA, especially not ordering any other tests than the SED rate and CRP screen?

I have been doing so much reading in the past 4 months on this disease - and it makes me mad to realize that I should have been getting treatment long ago and have not.

My GP will probably get upset that I went to the Rheumatologist instead of letting him treat me - but this is my health we are talking about.

Thanks for letting me sound off. Everyone have a safe and warm weekend.

HUGS[/QUOTE]
Ladywolfe, As I stated in my post above, I was only twenty years old when I got RA and I was working as a fitness instructor at a local health club. Fit as a fiddle with aspirations of becoming a body builder, you know, like Arnold (a'll be backkk) Swartzza... however you spell it.
Well anyway, I went to my family GP and he looked at my muscular build and considered my profession and simply said, "You're over training. Slow down and rest and take some aspirin for the pain. (aspirin couldn't touch this pain) but I did as he suggested, also thinking that surely a trained Dr would know best. Well 2 years later and 40 pounds of muscle mass lighter, my RA was eating me alive. The trouble was, I DIDN'T LOOK SICK, so every Dr I saw just blew me off. I didn't even get a sed rate blood test for nearly 10 years and finally saw a Rhumatologist who got me on some proper meds (methotrexate, NSAID and some pain killers that actually worked.) Now here is the moral to the story. See the correct type of DR for the type of disease you have and do as much research as you can to speek intelligently with your Dr. If you can communicate at his/her level and use the same lingo as they do, your ability to accurately treat your disease go up 100%. Do your best to distinguise between muscle pain and joint pain. Muscle pain can be very similar but caused by something completely different. There are several new drugs out there for RA that I haven't tried as mine has gone into remission. And one last thing. If your RA DR perscribes narcotic pain meds for you, use them only as perscribed NO MATTER WHAT. :nono: If you are not getting reasonable relief from the pain then tell the Dr and let them decide whats what. :wave: Best of luck to you and take charge of your own health destiny!

Ladywolfe 02-13-2004 10:35 AM

Re: Old Pro with RA
 
KenK,

Thank you very much for your reply and your advice. I have become a virtual book of knowledge about RA over the past few weeks. I look forward to the appt with the Rhuematologist later this month, so that I can get answers and start some form of treatment.

HUGS :)

meghurtz 02-19-2004 11:37 AM

Re: Old Pro with RA
 
Ken,

Hello! I hope you are feeling well these days. I dont take narcotics either. To arrest pain, I usually have to resort to Prednisone along with an anti-inflammatory like Bextra (its pretty fast-acting). I try not to take steroids unless my pain is really bad and luckily Ive been off of it for 2 months now and am currently taking nothing more than Enbrel. I do take the Bextra on those few days out of the month when I just cant seem to move as easily. But for the most part I think my pain level has gone way donw since starting the Enbrel. Have you tried a "Pred-Pak" for pain? Its a short-term dose of Prednisone but its enough to help knock out a flare before you get stuck. You mentioned you arent having too much pain these days so I hope you are doing okay.

LadyWolfe,
You're right to take action into your own hands. If your GP wont treat you (most dont) then YES! Run to your Rheumatologist. I agree, dont just pick up a prescription called in for you. Your RD should discuss the medications options with you before selecting one for you without discussing what your future looks like. DMARDs are a heavy decision to make. I wouldnt take that lightly. The RD should at least have enough bedside manner to give you the choice of what you want to take. Unfortunately, Methotrexate (MTX) is where to start unless you start with Plaquenil, but thats even more gentle than MTX. Sulfasalzine is another you might start with. Once you "fail" the beginner meds, they'll move you onto the bigger ones. Its not really in the control of the doctors though. The drug companies require you to have tried some meds before you "qualify" for others. A lot of red tape in the medical world.

I hope you both are doing well and resting up. Take care of you!

~Meg

MaggieJ119 03-06-2004 10:30 PM

Re: Old Pro with RA
 
I was diagnosed with Rheumatoid arthritis when i was thirteen years old. I am not nineteen and my doctor is finally have some success with getting my arthritis under control. It has taken years and so many medicines I can't even remember them all.There is hope just be persistant.

muleormari 03-10-2004 06:53 AM

Re: Old Pro with RA
 
[QUOTE=meghurtz]Hey everyone! I just wanted to let you all know that Im an "ols pro" at Arthritis. Ive had Rheumatoid Arthritis for a few years and was diagnosed when I was 27. Ive been on Celebrex, Vioxx, Bextra, Prednisone, Methotrexate, and now on Enbrel. Ive been to every kind of doctor imaginable and would be more than happy to answer questions for you about RA. I'll try to check the boards on a regular basis,

~Meghurtz[/QUOTE]

Hi there
My name is Mariyn.
I am from Sudbury ,Ontario Canada. I am 41 old and I was diagnosed 3 years ago with RA.I am very frustrated with this, Have ever you heard about anyone talking of having some pain in the center of the chest bone area or around the left side of the breast area.It's like an ache comes and goes and it's just sometimes a strange feeling. I'm tired of being in pain:( I've been given alot of different meds boy!!!! Like Methotrexate 8tabs a week, Plaguenil ,Ketoprofen,folic acid ,prevacid, Endocet,tylenol,prednisone only twice,because when i was on Avara for 8 weeks i got belly's Palsey.so the doctor took me off the avara and put me on prednisone for 10 days in Oct 2003.Thank god the Bells Palsey went away.Then in Feb 2004 I went to Walk In Clinic because my hands were in terrible pain.I couldn't do anything with my hands.The doctor there again put me on prednisone.I my imflammation and pain was gone in about 3 hours.I couldn't believe how the predinsone helped me so much .It felt so good not to feel pain for aleast 8 days.I was able to go for walks and drink a cup of coffee and get dress without feeling pain.Today i am going for an EMG on my hands.I am just wondering if there could be another problem in there that's causes so my pain.Oh yes !!! My doctor is trying to get me approved to use Remicade.Have you tried Remicade?
Sorry for going on so long.Thanks for taking the time to read this.Have a great day:) Marilyn

EMG 04-09-2004 02:10 PM

Re: Old Pro with RA
 
Good advice...take charge of your own health destiny!!! learn the names of specific joints, bones etc, names of meds & what they do & progression of strength. this is very impressive to a dr. they know they cant just blow you off w/take 2 asprin. old school was the dr knows best, reality is they are just guessing most of the time.

Ladywolfe 04-10-2004 10:11 AM

Re: Old Pro with RA
 
Hi again :)

I was put on relafin (2x a day) and asulphazine (2tabs, 2x a day). I am now also on ultram for pain.
At my 2nd rheumatologist visit, the Dr told me that he would like to try me on Plaquinel. He gave me a brochure on it, told me to go home and think about it, and he would see me in 6 weeks.

I don't know about the rest of you, but I don't think I want to go on that medicine. The anti-inflammatories did seem to help for a month or so, now it feels like I did in the beginning - really rotten joint pain.

I'm going to keep trying until I find some combination of drugs that work for me. I do not want to be put on methotrexate - but he is also talking about possibly putting me on that down the road - yikes.

Take care and thanks for reading,

Mary Anne


All times are GMT -7. The time now is 12:30 AM.