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?
waiting for ins authorization? If its scheduling can you call frequently to see if there are cancellations? I've been seeing a rheumy only since November and it seems from posts here and what I've gathered in general this specialty has really long wait times for appts, wondering if its because they spend a good amt of time with each pt.
Sorry about all of your delays, hope you can get in sooner.
Patience, Dear Lady, patience
Peace
Bluedogs2
sherrie
Well, I called in Nov ( I had heard that the other Rheumys that worked with him retired, 2 of them) hoping to get an appointment before the end of the year... my appointment is today. I could have had an appointment with the new guy the next week... but I am not switching docs right now, I like mine and have heard to much bad about doc... I will stick with the one I like!
if i was feeling better i don't think it would bother me so much. but i just keep feeling worse and worse and nothing we've tried is working. everyone keeps telling me to be patient - which i can appreciate to a point - but in the meantime i'm sitting here in pain and tired and angry and omfg just so frustrated.
My Rheumatologist is 2 hours away (4 hour round trip).
Started with Mtx (7 tabs) Jan 2012
Mtx reduced to 4 tabs Aug 2012 - hit a brick wall
Doc wants to start Humira - lost job and insurance
Work on free Humira - finally accepted May 2013
After 4 months Humira starts working - 20% improvement
Finally obtain health insurance Nov 2013 - need pre-authorization for Humira
Humira denied - says Enbrel OK
No response from Dr about Enbrel after 3 phone calls and a letter
Now ran out of Humira 5 weeks ago - started to feel this effect.
I've given up. Absolutely no communication from the Doc or his office after repeated phone calls and a letter directly to him. Slowly but surely the Humira effect is wearing off.
I've lost my patience. It took so long just to get started with the Humira and I was so happy. Now back to square one.
Will be curious to what the Doc's reaction is when I have my next appointment the 3rd week of February.
How in the world did previous generations survive this without dmards & biologics? Did they all just take opium & morphine & take to their beds? This pain is more than a human should have to bear. I'm on day 18 of my flare & the inflammation is affecting my brain. Its just getting to be too much.
I agree with a few of the other posts. If you can't (or don't want to) switch to a Rheumy that is farther away, then I would absolutely call your current Rheumatologist's office EVERY DAY to check for cancelled appointments.
I don't know when this started, but I remember that Dr. offices would call US if we requested an earlier appt. and someone cancelled, now it seems that they don't give a crap and always want US to rearrange their schedule for them!
When I was seeing a different Rheumy and his P.A., I was ALWAYS called the day of my appt to ask if I could come in earlier because she wanted to get out earlier and I was her latest appt. of the day!
Let's just say, that didn't fare well with my bosses who already approved me to leave at a certain time!
I would call every day and hope they have something open soon!
I am happy with the decision.
I started having trouble in 2005 with a knee problem. I went through the whole spiel with an othropedist who finally gave up on me as asked me if I had lupus (I don't.). By 2009 we had never figured it out, it had sort of resolved itself, but then we moved.
When we moved, we had to change insurance, and it was at the end of that year that the bad flares started in. One of the docs decided I had fibromyalgia, but I kept having other issues that all had some sort of inflammation as their defining characteristic. so I started to think this was an incorrect diagnosis. I had changed doctors and she went with what was on the chart and never looked beyond that, no matter what I said. Meanwhile, I had gone through episodes where my arm wouldn't straighten for months, my finger joints and hip joints started to regularly hurt and in a bad flare, my ankles and wrists would join in. Finally in 2012, I took a bad fall and really messed up an ankle. I did everything possible to do to it except break it. In the middle of this, I started to wheeze and have breathing problems. (turns out later that was a mold problem in the rent house). My doctor got to the point where she refused to see me even through I SPECIFICALLY brought up the possibility of seronegative options and requested a referral to rheumatology.
In June 2012, the army moved us again and I got to start over again. I had gotten in the habit of bringing my husband along to visits as a witness. I started off wearily stating that my chart said I had fibro but that I disagreed. This doc surprised me by asking, "Why do you think that?" So I poured out everything I had been reading and researching and I kept coming back to the inflammation issue. His response when I concluded with the statement "It's possible that I have fibro, but I don't think that's the whole story of what is going on here." I about fell out of the chair when he thought for a minute and said "I think you're right. Let's look for something else." He liked the challenge I presented since I was diagnostically difficult. It took nine months of experimenting around with things so that army didn't kick anything back and I got a referral to a rheumatologist.
Once the referral went through in June, I had to wait until earlyu August to see a rheumatologist. It wasn't the one I asked for, but he is in the same office, and I do like him a great deal. He checked me out very thoroughly and started rather aggressive treatment. We haven't hit that magic cocktail yet, but I am WAY better than I was.
So for this next visit, I almost cried when they called and wanted to reschedule, but then they remembered that I fly in and were very nice about just moving the time and not the day. I generally hit a 6:00 flight out and arrive back home at 5:00 I have a nice lunch in "the big city" and enjoy some quiet time looking at the water.
FieryPrincess, NINE months just to get a referral? Wow. Coaltrain, the negligence your doctor's office has shown is mind-boggling. Steph, I know the specialty pharmacy was making you nuts. You people who drive hours for appointments are made out of tougher stuff than me. If I had something other than a 20-year-old car I might feel a little differently, but probably not.
I guess part of the problem is that rheumys are in short supply. Once you weed out the not-going-back-there-in-this-lifetime crew, there are even fewer. As I said, mine is replacing two. She's the only game in a town of 70K. I like her, I respect her her, and I don't want to change, but geez . . .
Best I can tell, there are only three rheumys in our state (granted there's less than a million in the state, but STILL!)
And nine months was such an improvement over three years of another doctor denying there was ever a problem. We still call her "The Woman Trying to Kill Me"