Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Just wanted to say hello and provide a bit of an introduction. I just joined.
In June, I started having trouble with stiffness/range of motion in my neck. Went to the chiro, no joy. Got a massage, no joy. Also started having stiffness in my fingers. I called to make an appt with our town's only rheumy -- I was scheduled to see him in August.
I am a very active, 51 year old female. We hike, mountain bike, etc. I work full-time and do fused glass "on the side". In July, I did a backpacking trip in the Grand Tetons -- carried a pack over an 11,000 ft pass. At the time, I was still having neck and hand issues, but nothing too major.
Two weeks later, my right quad started swelling. Hands and neck got worse. By the time I saw the doc, I was up to 10 ibuprofen a day (without much relief). Doc tells me it's osteo, and "it's only going to get worse" (nice). Puts me on meloxicam. At that point, I'm thinking, I really don't want to see what "worse" is. XRays, showed mild OA in neck and both knees. Wow, this is mild? Meloxicam did very little.
Three weeks later, knee still swelling with any activity, I requested an MRI. That came back as yes, OA, and also a cluster of cysts in the knee cavity. So.. appt with a knee doc for a little buffing and cleaning.
7 days before surgery I had to go off NSAIDS. That was a very unpleasant week, where I traveled to Denver over the weekend and tried to enjoy myself. Got back, had an appt with the RA doc, and said, "Look. This is not normal. My knee continues to swell. I have tendonitis in my wrist. My hands are swollen; my neck hardly moves. My body is over-reacting to EVERYTHING. This is NOT normal. You have run no tests. I want tests for RA, TH4, and anything else you can think of!" Oh, yeah, and I want Celebrex.
Next day was surgery and I felt wonderful (later found out I received a big steroid dose during surgery). Started celebrex the day after, and was pain-free for at least three weeks. In the meantime, tests came back -- RF = 51, and anti-ccp ">200".
So.. had my first treatment consult with the doc Tuesday. He walked in and said, "I was wrong. You were right". Like I told him, this is one case where I would rather have been wrong. I will be starting MTX tomorrow (he suggested since I work to wait until Friday, in case I experience side effects). I thought I would have to stop the Celebrex, and I wasn't looking forward to that, but the doc says I can stay on it. The MTX dose is 4 pills, but he said he will probably increase the dose over time.
During this time I have had my ups and downs. As I mentioned, I am very active. Outdoor activity is what we "do" -- what my husband and I do as a couple and what we do with friends. When I learned it was OA, was emotional for a while, and then came to terms. Then I learned it was RA, emotional, but got a grip. Then I read too much on the 'net about what my markers mean, and got emotional again. I'm still in the "trying to come to terms" phase with the fact that the RA is potentially more aggressive than it would be if my anti-ccp were normal.
Right now, I am experiencing only mild stiffness in my neck and wrist. It seems somewhat cyclical, so I've started tracking it more closely. I am trying to be hopeful that we have caught it early, and, even though the odds aren't good because of the a-ccp, that I can get to remission (a girl can dream, right?)
I have always been so healthy. My only surgeries in my life were a tonsilectomy at 5 YO and bunion surgery 5 years ago. I am rarely sick and I've always been "proud" of my immune system. So much for that!
On the home front, my husband has psoriatic arthritis. He took MTX, and had no side effects (he claims hair loss -- I claim it was age!). He is now on Enbrel only, but I'm thinking he needs to get back on the MTX. Surprisingly, I have suddenly become more empathic about his PA ;). He, however, mostly dealt with hands and fatigue, so he's never had anyone look at him and say "you know, you may need to change your lifestyle" like I have. Not that I am "worse" (we all have our own experience), but so far, it has affected his abilities less than I have been affected. I do wonder who will care for us in "old age" :). The family pet, Snoopy cat, is 20.5 and probably has less aches and pains than either of us ;).
Well, sorry for the missive. My goal is to stay active, keep working, and keep "doing my glass". I am hoping with proper meds and management, I can achieve that goal.
Dana W.
In June, I started having trouble with stiffness/range of motion in my neck. Went to the chiro, no joy. Got a massage, no joy. Also started having stiffness in my fingers. I called to make an appt with our town's only rheumy -- I was scheduled to see him in August.
I am a very active, 51 year old female. We hike, mountain bike, etc. I work full-time and do fused glass "on the side". In July, I did a backpacking trip in the Grand Tetons -- carried a pack over an 11,000 ft pass. At the time, I was still having neck and hand issues, but nothing too major.
Two weeks later, my right quad started swelling. Hands and neck got worse. By the time I saw the doc, I was up to 10 ibuprofen a day (without much relief). Doc tells me it's osteo, and "it's only going to get worse" (nice). Puts me on meloxicam. At that point, I'm thinking, I really don't want to see what "worse" is. XRays, showed mild OA in neck and both knees. Wow, this is mild? Meloxicam did very little.
Three weeks later, knee still swelling with any activity, I requested an MRI. That came back as yes, OA, and also a cluster of cysts in the knee cavity. So.. appt with a knee doc for a little buffing and cleaning.
7 days before surgery I had to go off NSAIDS. That was a very unpleasant week, where I traveled to Denver over the weekend and tried to enjoy myself. Got back, had an appt with the RA doc, and said, "Look. This is not normal. My knee continues to swell. I have tendonitis in my wrist. My hands are swollen; my neck hardly moves. My body is over-reacting to EVERYTHING. This is NOT normal. You have run no tests. I want tests for RA, TH4, and anything else you can think of!" Oh, yeah, and I want Celebrex.
Next day was surgery and I felt wonderful (later found out I received a big steroid dose during surgery). Started celebrex the day after, and was pain-free for at least three weeks. In the meantime, tests came back -- RF = 51, and anti-ccp ">200".
So.. had my first treatment consult with the doc Tuesday. He walked in and said, "I was wrong. You were right". Like I told him, this is one case where I would rather have been wrong. I will be starting MTX tomorrow (he suggested since I work to wait until Friday, in case I experience side effects). I thought I would have to stop the Celebrex, and I wasn't looking forward to that, but the doc says I can stay on it. The MTX dose is 4 pills, but he said he will probably increase the dose over time.
During this time I have had my ups and downs. As I mentioned, I am very active. Outdoor activity is what we "do" -- what my husband and I do as a couple and what we do with friends. When I learned it was OA, was emotional for a while, and then came to terms. Then I learned it was RA, emotional, but got a grip. Then I read too much on the 'net about what my markers mean, and got emotional again. I'm still in the "trying to come to terms" phase with the fact that the RA is potentially more aggressive than it would be if my anti-ccp were normal.
Right now, I am experiencing only mild stiffness in my neck and wrist. It seems somewhat cyclical, so I've started tracking it more closely. I am trying to be hopeful that we have caught it early, and, even though the odds aren't good because of the a-ccp, that I can get to remission (a girl can dream, right?)
I have always been so healthy. My only surgeries in my life were a tonsilectomy at 5 YO and bunion surgery 5 years ago. I am rarely sick and I've always been "proud" of my immune system. So much for that!
On the home front, my husband has psoriatic arthritis. He took MTX, and had no side effects (he claims hair loss -- I claim it was age!). He is now on Enbrel only, but I'm thinking he needs to get back on the MTX. Surprisingly, I have suddenly become more empathic about his PA ;). He, however, mostly dealt with hands and fatigue, so he's never had anyone look at him and say "you know, you may need to change your lifestyle" like I have. Not that I am "worse" (we all have our own experience), but so far, it has affected his abilities less than I have been affected. I do wonder who will care for us in "old age" :). The family pet, Snoopy cat, is 20.5 and probably has less aches and pains than either of us ;).
Well, sorry for the missive. My goal is to stay active, keep working, and keep "doing my glass". I am hoping with proper meds and management, I can achieve that goal.
Dana W.
hang in there , stay strong !!
As of now, I am ok. I have minor aches and pains and fatigue, but there has been improvement in the last 2 weeks. Started MTX 7 weeks ago. My rheum just upped the dose from 4 to 6 pills a week.
Compared to many others with RA, I feel lucky. I have only had two instances in the last year where RA seriously affected my everyday activites. Once when my shoulder flared and I had llimited range of motion for most of the day, and the other affected my right hand all the way up to my shoulder. Was terrible in the morning and kept me up most of the night with pain, but by the ned of the day it was minor pain. It was this instance that prompted me to go to the Dr. who did the blookd work and referred me to the Rheum. I have never had visible swelling, just what my Rheum calls "thickness" "fullness" in hand and some fingers. That never goes away.
I guess I'm hoping the positive CCP indicating more aggresive disease is not true for everybody....or maybe I am still in denial. I plan to enjoy the health I have right now.
I am glad you got the right diagnoses and you are starting treatment. Try not to worry about the lab numbers too much and take it one day at a time. As I'm told, RA affects each person differently.
My doc said most athletic patients get on a biologic quickly, if it is an option for you. I couldn't walk the dogs last winter, within 2 weeks of being on Cimzia my feet were better. Then MTX after a few months when the flares didn't end.
Best of luck.
I'm crossing my fingers that things go well with the MTX. I have an in-house training class to give tomorrow at work, and I'd hate to throw up in the middle ;)
Dana
That was a wonderful introduction. I sure hope you like it here as we have a very supportive group.
Welcome to the forum!!
Regards,
TheWino
Peggy
www.puppyjackpot.com
My mother would tell me how active she had been in sports etc and then ended up with a lot of physical issues-weird isn't it. BUt I would say to try to keep moving,because not moving will make things worse I know.