Is RA considered a rare disease? Does anyone have any information on how many RA patients a rheumatologist usually diagnoses and/or treats in relation to the rest of their practice? I am trying to get a feel here for the rarity or commonness of having RA and then, if it is rare and/or uncommon, why isn't it taken more seriously. After reading a slug of posts in here recently about the brushoffs alot of us (and if you don't agree with me because your experience has been wonderful, please don't bash me, thank you) seem to be getting. Are they just frustrated or don't see enough RA to be able to know how to handle and treat it? Or is it just a hopeless situation and they know it and just blow through us as fast as possible because they don't want to deal with RA patients? This is really getting to be a pathetic situation and I am almost convinced its time to contact the Surgeon General and start questioning the AMA and ACR protocols and training to handle RA patients. All I have to do it print about 1,000 pages of posts in here and send it to the SG to prove my point.
It's estimated that between 0.5 and 1% of a developed countries population has RA. It is the 2nd most common mainstream type of arthritis diagnosed, with osteoarthritis being the first, although the gap between 1st and 2nd place is huge. RA is the number 1 inflammatory arthritis diagnosed.
I know that here in the UK we have a huge shortage of Rheumatologists. From what I can remember there are just over 350 rheumatologists in the UK and recent statistics show that there are 400,000 people with RA alone, not counting all the other diseases RD's treat. It gets even worse when looking at pediactiric (sp?) and young adult rheumatology. According to official figures there are about 27,000 children (i.e., under 18) with a form of junvenile arthritis and very few RD's able to treat them.
The big arthritis charities in the USA should have the specific stats to help you or your equivelant to the National Statistics Agency.
Scattered - thank you. CathyI have something that I got from the Arthritis Advocacy Summit this past Feb that has statistics on it...Ill look for it today and post the stats that they gave us. My guess without any stats to back me up that RA is the most common disease treated by a rheumatologist. Most patients with OA are treated by their primary care doctors unless they have really bad OA.
Ok, so for Psoriatic Arthritis...it looks like it affects about 2% of the population with Psoriasis. Psoriasis affects about 3% of the population. Of course you can have Psoriatic Arthritis without ever having Psoriasis, but I could not get a clear picture of what percentage that was.
I have both. Also...Psoriatic Arthritis affects men and women equally! I think that is the only one of the big Arthritis's that do that.
Whoa, Shelley, that is the only AI disease to do that. Again, another 'difference' that needs studying.
Scattered and JSNM - The stat I always see bandied about is 1% of the population. The other I always see is 1 out of every 6 Americans has an AI disease. You might check the info on the Arthritis Foundation.
Pip
I think not a lot of Dr's opt for rheumatology because it's kind of hopelessPay stacks up poorly Rheumatology is one of the lowest reimbursed specialities.
I think that with most rheumatologists that RA and other inflammatory arthritises is taken very seriously. Sometimes its a challenge getting into seeing one in a timely manner, with the shortage of rheumatolgists. And of course, like any other specialty there are doctors that are good and doctors that aren't good. One patient may have a bad experience with a doctor but does that mean that he is a bad overall doctor or just not the right one for that particular patient. I have to admit everytime I hear a bad story about a doctor I am dying to hear the doctors version. Afterall there are 2 sides to every story and we only hear one...and that is only with the details the teller think are important.
Is the problem with the protocals or with individual doctors who fail to follow them? Is the problem with patients that aren't easily diagnosed? I tend to think its with the individuals than with the overall processes.
I remember a study from about 5 or 6 years ago that surveyed patient satisfaction and outcomes. Rheumatologist topped the patient satisfaction survey and patients who saw a rheumatologist for their arthrtis had far better outcomes than those who did not. People who are unhappy are far more likely to post on a bulletin board than those who are happy.
I am glad I went to see a Rhumetologist my GP told me all the tests were fine(CBC, for lupus etc) My only indicator was a positive ANA. I am really glad I went!Buckeye -
I thought it was the rheumatologists (me of the 10 docs scenario) not wanting to try AP. I was surprised when I landed here and found other people had some of the same sequential problems with docs that I did. And it frightens me.
Maybe because they think there is not much they can do to ease the suffering they pull back emotionally or something. It's a lot easier to 'blame the victim' than 'blame the system' that continually fails them.
Pip
Pip, I think you are right. I looked at the RD's eyes when he was seeing the continued swelling and such. He literally scratched his head(thought that only happened to teachers!) He knows that we have not won, and it made me feel sad for him...I can't imagine treating someone like me...who has never gotten relief in nine months of treatment. I also learned the he is not getting much reimbursement for the Remicade, and the clinic is losing huge amounts of money on that particular drug. They are going to change pharmacies and hope the losses get better.
I also feel bad for my poor hubby, to listen to the doctor say...this is the hardest strain of arthritis to treat, and I wish she had been here sooner.
I know for me the RD in town only wanted to look at two kinds of autoimmunes...Lupus and RA. I guess those have the most success in remission of any sort.
I guess it is a sad profession. I am thankful that anyone is willing to do this for a living.
My rheumy said that the new doctors and med students aren't going into the field to study rheumatology. Until then, our situations with doctors will only get worse. The older rheumy's are retireing and no one is there to take their place. One of the reasons why we have to wait so long to get in to see them. We can only hope that more med students go into our field so we have more help. I've even considered going into medicine just so RA paitients will have a doctor with experience with this disease. I'm not sure I'd be able to hack it and manage this disease at the same time though. Here's hoping our situations change and for the better!!Pip
You disagree obviously but failure to prescribe minocycline, a treatment many rheumatologists feel is less effective than other meds is not necessarily a sign of a bad doctor. You had already decided the only treatment you would accept, you didnt want the services of a doctor you wanted a prescription
Personally I have seen 8 different rheumatologists in 4 different states and have yet to find one who wasn't willing to partner with me. But that is my experience
"It's a lot easier to 'blame the victim' than 'blame the system' that continually fails them."
I also think it was really interesting that you used this line. Every single person that has come on the board and has said that they have failed AP have been told that they didn't do it right, didn't wait long enough, or weren't strong or patient enough to deal with a herx. Isn't that "blaming the victim"?
My rheumy and I had a long conversation about the inability of rheumatologist to cure their patients.
They're one of the few specialist that don't have a cure at their fingertips. How would you like to see fifteen patients a day and know that you can't cure any of them, you can only offer pallative care, pain meds, drugs that may work for 55% of their patients.
How would you feel if your patient who is 62 years old, been in a flare for 3 years, no meds have worked for longer than 2-3 months, and now she's sitting in the examining room telling you that the newest drug isn't working. You examination reveals worsening inflammation and an increase in joint damage. How would you feel? What hope do they give their patients.
It's very easy to sit back and condemn situations when you haven't been there. You've heard one side of the stories. Also, you may have had incredible pain for a periof of time but now you're better. Your meds are working, your doctors are happy, you're happy, your family is happy. I wish I were there but I'll get there.
Not every doctor and patient is a good fit. I've been to 4 rheumatologist. I've been on most of the RA/PA drugs, including Minocin. I'm not condeming my prior physicians because we weren't a good team. I recognize the good and the bad in the physician community, remember I was a surgical nurse for 20 years and I've seen incompetent physicians. I don't feel that my prior rheumys were incompetent. They were too busy, frustrated, and and in one case ill.
There aren't enough rheumatologist and not many physicians want a specialty where they can't cure a large portion of their patients. I wish I knew the answer, but I know it isn't condemning the medical community. Try working with them, that's what I've chose to do and it's working. Sometimes our expectations are too great and we forget the human elements in the physician/patient relationship. I'm not better yet but I'm on that road. Lindy
Statistics wise I've most often read it affects about 1% of the population with about 3x as many women as men (...still a lot of men!). I guess I've been lucky with my RD...same doctor for 6 yrs and I feel we've worked well together. I have appts every 3 months with blood tests and x-rays once per year. She's quickly referred me to a neurologist and cardiologists when necessary. I had an appt today and my next appt is in 6 weeks since I'm starting a new med (Arava to add to Humira). I am much better now than I was the first year so don't feel that getting worse is inevitable...but it is a struggle. I have never had to deal directly with insurance to get Humira, etc. approved so I feel I have been well served by the doctor and nurses.
Alan
You are very lucky indeed, Alan.
Buckeye - if you look over my posts, most of the docs I'd seen were willing to write the scrip, none were willing to monitor me. Since I am a 'medical error magnet' I was not willing to do that. I needed a doc to watch me, learn about AP, and help me thru what any amount of research will show - I was going to get worse before I got better. Period. I had no idea I was going to hit the AP lotto and respond as well and as fast as I did. Frankly, I think it's the nature of my disease - but since no other PRA people did AP, how was I to know that was a possibilty?
And I do not think that we APer's 'blame the victim'. How many posts have you seen on AI that people were on AP for 3 months, herxing like hell, and quit when, if they tweaked the protocol there was a good chance the protocol would kick in? How many were not told by their docs that they should be on probiotics to replenish good gut flora? I'm not a doc - but I know when I skipped my probiotics I started to seriously backslide.
If I were alone; I would have failed. My local rheumy and my local docs did not know enough to help me with rudimentary tweakes to help this work. Why not? Where is the 'give and take' when I have made my choice known?
How many people would regret not doing everything they could to get AP to work - if they knew their were things they could have done?
How many people know they can go to the Roadback and get advice from others walking this road back to health?
I've heard of 2 docs that tell their patients where to get support. The rest - those people are on their own.
Pip
it is blaming the victim when you and other AP'ers point out the things someone may or maynot be doing wrong when they say AP failed. You cannot admit that some people don't respond.
And before I get attacked for being anti AP..I'm not, I've suggested it to many newly diagnosed people especially if the seemd to get ill after an infection. I simply do not believe that it is a cure all
I think if you look at your RA drs. with a different light--not that the patients don't get better that they are helping as much as they can to ease the pain and discomfort of their patients. Yes, some patients are having real bad times, but they do help a lot of us. Frankly, my dr is very young--uncomfortable young. The practice does keep loosing RA drs. and I know there are too few. I would imagine someone gets into the field because they know someone who has RA or they have RA. I also know they don't make as much money but then they probably are not pulled out of bed in the middle of the night to treat someone. I do think money does attrack a lot of doctors to go into other fields.I never thought you were anti-AP. I just think that unless people have somebody to hold their hand in the beginning and during herxing...they have a darn good chance of 'failing'. But did they fail, or were their things they could have done? That whole lemon/olive oil drink. I had no idea that it could really work.
I have no idea how long AP can work. I've seen posts and know people that have talked to people on the program for 25 years. I need to make it 40+ years (assuming I don't get my 'cure'.) If somebody gives up and gets on the ladder - what do they do later? It's a lot harder (but still possible) to do AP after but...
Look the average age on AI - we've had a lot of people in their 20's and 30's here lately. They need to make it 40 - 60 years.
It's not 'blaming the victim' because I always thought it was the doctors fault. It's trying to help somebody make it though so they can buy themselves time.
If AP fails around year 5 - 6 - they need to rotate the antibiotics. That will buy them even more time - to live their lives and participate with their families.
That's not blame - that's knowledge - and knowledge is power.
Pip
Well i can tell you where i got my satisfaction. After all my miss treatment. My anti-ccp test came back with a score of 100. So i called the hospital administrator and said i am not hypocodriac. Mayo clinic says i am very sick. Not to mention i had a white count of 16.9 .So i tell everyone if i had a 5 on my anti-ccp i would be considered very sick and i am 20x sicker than that and you better tell your er staff the next time i come in they better treat me and keep there comments to them self. They sure picked the wrong day to decide there was nothing wrong with me. And then now i have an abcessed check bone on exray to back me up. I do get a good responce with 20x sicker than very sick. Because people don't understand RA. Even the electric company is being nice to me.
You go, girl!
Pip
Wow, I didn't know that. I made the assumption that Rhem drs were plentiful or paid well. My dr is great, he really works w/ me, listens to me, wants me to have blood tests every 2 months and is encouraging me, that I WILL get better. The nurses and staff are all very kind, great.
Actually, I have trouble getting rides, thats getting better and my dr will scold a little on that, LOl.. but he really does care. Since Humira didn't work for me, up next is Reflixcan////? something like that
I like hearing about the UK too, and also I do think that being in a big city helps, yes i have noticed there aren't that many Rhems around. My dr works w/ about 8-10 other drs. Big facility. AP treatment, does that mean not taking the major meds like MTX etc? I just want to take whatever will work and my dr gives me any pains meds i want. They are a very very busy practice! My rheumatologist is fantastic, it's the last few primary care doctors I've had who have failed me miserably. After YEARS of describing symptoms to my PC doctor, finally I did research myself and ASKED for an RA test! Sure enough, it was positive and I got referred to this rheumatologist. He's the only one in my area, and sometimes I spend 3 hours in the waiting room before my appointment! My rheumatologist also discovered that I have Antiphospholipid Syndrome (an offshoot of RA), which can be life-theatening, and NOBODY tests for that, since it's pretty rare. Naturally, I switched PC doctors, but my new one is not much better, he knows absolutely NOTHING about RA. I am educating him, but believe me, he's a slow learner! I had to wait FOUR MONTHS to get a hip MRI when I was having severe pain. All I had to do was MENTION the pain to my rheumatoloigist (I hadn't told him before, because I thought it was "referred" pain from a spine injury/surgery) and he immediately diagnosed it as inflammation of the hip bursa, gave me a cortisone shot, and magic pain relief! After four months of agony. I could have slapped my PC doctor, and I did confront him & he apologized. I'm sticking with him for now, because - do I want to break in ANOTHER new doctor? My rheumatologist told me that MOST primary care doctors know little or nothing about RA and constantly misdiagnose or ignore what they consider to be "imaginary" pain. Frustrating! My GP was informed I'd tested positive by the hospital. She immediately referred me to a Rheumy. I didnt want to wait so paid privately. The chap I saw privately is for continuity's sake the chap I see on the NHS. My GP is fantastic. She did some homework on RA (skin things are her speciality) and its been put on my file that if I ring up needing to see her I get to see her that day, and if she's not in I get to see whoever is available. We are working our way through pain meds to find one that suits. If I need a pred shot, I ring up and they get it in (the rheumy has confirmed he's happy for them to do that). My Gp's office are aware that I'm expected in 3 monthly for full blood testing. At the hospital there are 5 Rheumatologists 3 on at any one time. The hospital even has its own RA ward. When I go for an appt. at the hospital the format is always the same, I'm seen by the nurse first for all the general stuff (weight, blood pressure), then I'm seen by the rheumy and then by a different nurse for all the bloods. I didnt like my rheumy at first but after reading a lot of posts and getting myself informed I feel very lucky to be in such good hands. My rheumy prefers me to come with questions and ideas for my long term management, so that we can work together at getting it right for me, because as we discussed the last time I was in, we're going to be together for a long time. Our health care system is very different to yours but the stresses that the majority of you have to go through with your insurance companies/form filling/justification etc would drive me to distraction. I am very lucky that I have a fantastic RD and PCP. Both doctors work with me and actually listen to me and take what I suggest into account and discuss with me since they know I do a lot of research etc. I couldn’t ask for better docs. Another reason that not many of our med school grads are going into rheumatology is the extra internships and fellowships that you have to do. Rheumies need more schooling on average than any other specialty. My rheumy is not only an MD, but also has a Phd in Immunology. Can you just imagine the time he has spent in school? He even did research in I have had the experience of bad doctors when we lived in AZ. I had just the most horrid ortho that did the high tibial osteotomy on my knee. There was one office visit where I thought Can you keep both docs Gimpy? Your regular RD and a doc that does AP? Have you found a doc that does the AP yet? We were considering a move to
of this, though, is that it has made me reluctant to switch to Dr's fluent in
AP---I don't want to lose a crackerjack medical team!
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for an RD I need a referral from my GP. She's willing to do that but talked
me into staying with the one I have. My RD is very well known in these
parts and considered one of the best---I have met many RA people who
have RD envy of me, haha. Also, I would have found an AP RD if my RD
wouldn't put me on AP, but she was surprisingly willing. She doesn't know
much about the treatment but she has a few patients doing it and she
says it's made her more open minded (I'm also starting to suspect she
knows more about it than she lets on).
My other option is to pay out of pocket to see someone not in the Medical
Services Plan System. There's a very famous Marshall protocol doctor in
my city, who's not on MSP. My extended insusrance would pay some of
that, if I needed to go, but not nearly enough to make it economical for
me. However, I'm willing to pay if I feel I'm running into serious problems.
So my plan is to keep doing what I'm doing right now unless I run into
difficult snags in my treatment, at which point I will consider other
options. I feel like I get very good medical care and the one place it
breaks down is no one has clinical experience with my treatment of
choice.Hi there,
My rheumatologist told me that the USA diagnoses upwards of 10,000 a year with RA. Also, she stated that most of them are women and 99% of them hit menopause at the exact same time. She also stated that men over 70 are being diagnosed so rapidly in the last few years. I hope that information helps. I'm seeing my RA doc in a couple of weeks and I'll ask her for updated numbers.
I understand your frustration. I feel the same exact way. I am slowly beginning to accept my diagnoses and meeting more and more people with RA and most of them are younger than I am (I'm 52yo and have had it for 3 years). Hang in there and know that there are so many other people who feel the way you do about this horrible, dibilitating disease.
Best personal regards,
KIMM
I have posted about this before.
I have a wonderful RD (he's young too) (( and cute)) he is an excellent dr, very up to date, has worked with research studies..
my PCP is fabulous. We live in a very rural area and somehow have been blessed with a cluster of docs, and medical facilities that are just fantastic..
Boy am I lucky.
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