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...
I am sooooo sick of this. Name of the game: hurry up and wait. Then wait some more.
I had really hoped to be feeling better by now, to have some of my life back. I started seeing a rheumatologist in April of 2012. Went through the usual tests & x-rays, started pred right away and MTX a week later. Started Humira about the first of October, quit it mid-November due to side effects. Began Enbrel mid-December.
January of '13, rheumy suggests I go the nearby university hospital for an evaluation, suggested staying on Enbrel while waiting to be seen there. Couldn't do it, as it took until late March to get an appointment and I didn't want to stay on it without medical support. Uni doc was worse than impossible- arrogant, rude, dismissive, and overpriced to boot. Meanwhile, the first one had a medical emergency, closed her practice and skipped town.
New one moves to town. I can see her in August. Re-start Enbrel in October, have to stop six weeks later. Appointment for 12/26 to start Orencia. They called to change that one, next available: January 27. I had to move that one, as I'm getting new insurance 2/1 (thank you, Obamacare) and it didn't make sense to put the cost of the appointment towards a deductible on a policy that would end in a few days, AND starting the approval process for a policy not even in effect yet doesn't work. Appointment date: March 6.
So, the 6-week follow up has stretched to alms four months. Almost eight months lost waiting for appointments after I lost my first do In the last 14 months my only change in treatment was to try Enbrel twice, with no results. What I'm doing isn't working that well and my patience is running thin.
I like my current rheumy, and I think she's quite good. She's the only one in town, though, and between my first one leaving and the other here retiring at the same time, her practice filled- maybe over-filled- immediately. Anyone else is an hour or more away.
Does it really have to be this hard?
I had really hoped to be feeling better by now, to have some of my life back. I started seeing a rheumatologist in April of 2012. Went through the usual tests & x-rays, started pred right away and MTX a week later. Started Humira about the first of October, quit it mid-November due to side effects. Began Enbrel mid-December.
January of '13, rheumy suggests I go the nearby university hospital for an evaluation, suggested staying on Enbrel while waiting to be seen there. Couldn't do it, as it took until late March to get an appointment and I didn't want to stay on it without medical support. Uni doc was worse than impossible- arrogant, rude, dismissive, and overpriced to boot. Meanwhile, the first one had a medical emergency, closed her practice and skipped town.
New one moves to town. I can see her in August. Re-start Enbrel in October, have to stop six weeks later. Appointment for 12/26 to start Orencia. They called to change that one, next available: January 27. I had to move that one, as I'm getting new insurance 2/1 (thank you, Obamacare) and it didn't make sense to put the cost of the appointment towards a deductible on a policy that would end in a few days, AND starting the approval process for a policy not even in effect yet doesn't work. Appointment date: March 6.
So, the 6-week follow up has stretched to alms four months. Almost eight months lost waiting for appointments after I lost my first do In the last 14 months my only change in treatment was to try Enbrel twice, with no results. What I'm doing isn't working that well and my patience is running thin.
I like my current rheumy, and I think she's quite good. She's the only one in town, though, and between my first one leaving and the other here retiring at the same time, her practice filled- maybe over-filled- immediately. Anyone else is an hour or more away.
Does it really have to be this hard?
This is awful!!
I just told my aunt I wushu these doctors had to live in these bodies, then we'd get some where.
Some act like this disease is no biggie. Heck I cried when I my RA doc called with the diagnosis. She wanted to know why I was so upset?
My sister has had RA most of her life, she's now the bionic women with more artificial joints the not. I took care of her there for I know.
Not to mention I already had chronic pain daily.
Your darn right I cried!
Coal that no response from the dr is BS. I would see red!
There's no reason for that. Allowing a person to suffer should go against what these doctors stand for. What does that oath mean that doctors take "Do no harm"?
I don't love my Rheumy but she does not leave me hanging.
Now my PM doctor I'd drive long distance if I could, he's what a doctor should be. God willing he never changes.
I'm sorry for all of you.
What a dilemma Alto, not sure what I'd do.
Can you discuss your concerns with the doctor?
If you like her that much may be worth a shot.
Good luck to you all, I'm going to work on improving my relationship with my doctor. I sure would not want to be in any of your shoes.
Sammy
Because all the patients the receptionist deals with are in pain they often become immune to it - and only "hear" the ones who really SQWAK.
If your treatment plan isn't working and your are suffering then you shouldn't have to wait anymore than a month for an appointment.
Trust me they can find room fit you in. BE YOUR OWN ADVOCATE... no one else will do it, you have to make it happen. All being patient will get you is being last on the list.
THAT being said you do need patience with the MEDS it takes a while to get the right combo.
you'll have an appointment by days end for 2/1
ducking :)
does sound like a huge runaround alto.
explain again why you did not want to remain on the enbrel until your February appointment?
Ros
I'm terribly sorry for your waiting time and disorganized physician situation.
FieryPrincess: your story nearly mirrors mine. My local Rheumy came to the conclusion that I had fibromyalgia as well. I just positively knew this was not my problem. For example, I have zero positive pressure points, responded well to steroids and I didn't respond to any fibromyalgia medications.
And, I did have an RF of almost sixty, swelling, intense pain, and GI problems. My pain doc knew a great fibromyalgia physician at a teaching hospital. After spending about four hours with this doc, his report stated that I more than likely had an "Undifferentiated Connective Tissue Disease."
My local Rheumy tossed this report aside and continued to treat me for fibromyalgia.
So I made an appoint at Mayo and saw a terrible physician there. He received his degree in Argentina and I couldn't find one single word about him on the Internet.
On the appointment day, I entered the exam room and the physician was obviously looking at notes from my local Rheumatologist. He pressed the fibromyalgia pressure points and I was negative for all of them. He then stated, "it looks like you have fibromyalgia." I was flabbergasted. I said, "I drove all the way here to simply have you check pressure points?" What about a physical exam, tests, or labs." He answered, "if you want labs done, we can do them." I was one frustrated Wino.
Mayo was a complete waste of time.
A colleague knows a great Rheumatologist that is a five hour drive from home. The Rheumy didn't accept new patients but made an exception for me after hearing about my situation. Within two minutes of physically assessing me, my new Rheumy stated, "you have been misdiagnosed." I had seventeen X-rays done and he found osteoarthritis in six areas as well as the need for the DMARD.
I'm embarrassed for my local Rheumatologist who couldn't even diagnose osteoarthritis in two years of seeing him besides being wrong about the fibromyalgia.
So, I make Monday appointments with my Rheumy. I drive up Sunday and stay at a hotel that is five minutes from his office. Then, after seeing him, I drive five hours home.
'Twas a long journey getting to this point but my new Rheumy is worth every minute of the drive. (My wife helps with the driving when needed).
My longest post to date!
TheWino
Can anyone hack this website and add an "edit" function?
Wino, I can't imagine a five-hour drive to see a doctor. Do you live in a particularly remote location, or do you drive through several good-sized cities to get where you are going?
I live in a medium sized city with roughly 130,000 people.
I simply got tired of the care I was receiving locally. One magazine ranked my new Rheumatologist as one of the top 100 in the US. When he agreed to see me, I jumped on the opportunity.
His office has been very receptive to my calls and e-mails and my local GP agreed to coordinate with my out of town Rheumy.
I'm lucky to see him after all I've been through. I have been seeing my pain specialist since early 2009. It's been a rough ride.
Take care,
TheWino