This is just an observation, but I am struck by how each of us is tested, treated, respond, react, retest, medicated, whatever on an individual basis. I read that there are certain tests and xrays which should be done on regular basis, but I am getting the impression that each of our situations is handled differently by our rheumatologists, especially at our initial appointment to establish base lines.
Wouldn't a standard protocol of testing and xrays and progress endpoints with a plan that rheumatologists have to follow be a way to try to give new RA victims at least the same bottom line that researchers and our rheumatologists can use to work from? This has been formulating in my mind for the past few weeks, as I observe all these new members pouring in here, and noticing how each of us is handled differently from the very first visit. It's like a circus more than a scientifically-based medical system.
I've observed that most of us have had the basic testing, RA markers, xrays, etc. to establish a diagnosis. I very much doubt if anyone walked into the RD's office held out the offending joint and was diagnosed without any testing. I'm sure there's always the exception.
The treatment plans are a hodge podge of treatment because we're all different, with different health issues that are taken into account when a treatment plan is developed. My treatment plan will be much different than someone who is much younger and in perfect health except for their auto immune disease.
There are many factors that are considered before treatment is started, and as far as I'm concerned I'm glad it's not cookie cutter medicine. It sure would make life easier if it were, but the reality is, we don't have cookie cutter auto immune diseases.
My GP was the first to suspect some form of arthritis and I took myself off to a friend who is a consultant physician 2 days after my bloods were done ( I was still awaiting results), I just couldn't go thru another night of that searing pain and begged him to help me. He only had to look at me and said you have rheumatoid arthritis, then he went to download the blood test results and my RF was 486, my ESR 52, don't know what my CRP was but he put me straight onto MTX, 50mg Pred and 400mg Salazopyrin, then referred me to a rheumatologist, thank God for him as I was in intolerable pain and had a new baby to look after. Maybe on this thread we could tell how we were initially treated for the disease and how it was diagnosed. Great idea justsaynoemore , thanks Janie.Janie - I would be banned if I posted my litany, but the first rheumatologist refused to even test me, saying I was making it all up to cage for narcotics (my husband was with me). The second rheumy (whom I am still seeing 14 months later) pulled some blood work, an RA factor of 150 and a couple of others that pointed to RA as top dog, with scleroderma and mixed connective tissue diseases of which I have too many to list. The third and fourth opinions I had gave me two more completely different diagnosis (rhupus, no scleroderma, probably lupus), and all I did was talk with them, giving them my current blood work. They did not exam me or do any blood work. I had no baseline xrays taken and after 14 months, no repeats of the serologics or repeat of RA factor. Every three months its basic blood work and sometimes a urinalysis. No testing for Hep C.
But the two second/third opinion rheumys disputed the medications I was on, and suggested others, with no testing or examination. No pain medication was ever mentioned. So, four different rheumys with four different diagnosis, with four different medication suggestions. That's why I am wondering if there is a standard protocol for rheumatologists to follow for RA.
Like I said earlier there are the exceptions. Yes, there is standard protocols for diagnosis: Labs, xrays, bone denisity, examination. These are the basics. When I changed RDs to my current one I already had the basics done and had been on inadequate therapy prescribed by a very stubborn RD who wasn't going to change therapy or consider adding an additional therapy, hence the change of RDs.
There are good diagnosticians and not so good ones. Some run every test in the book and some dont run enough but the bottom line is yes, there is a standard protocol for diagnosis and I had the proper testing done to confirm the diagnosis, but not the proper treatment by my prior RD. Some RDs are very rigid and others are more cavalier with their treatment. I needed an RD who had a more cavalier attitude, the smarts to deal with my complications from RA (which at this point in time are many) and who was aggressive. I'm fortunate to have found an RD who fit that criteria. He diagnosed PA by looking at my fingers, then sent me for xrays to confirm his diagnosis. I had the typical cupping found only with PA.
Cathy, I really feel that you've been through a medical nightmare but you seem to be emerging. I think that few of us have had your experiences. I can't even begin to imagine what it was like to be undiagnosed or misdiagnosed for such a long period of time. Just remember that not all members of the medical community are like the ones that you've experienced. I feel that my prior RD was a good RD, but not for me. She had a huge practice and seemed to be well liked but she under treated me and wouldn't consider a change.
I think if we did a pol, that we'd find that most of us had the standard testing done, either prior to diagnosis or to confirm a suspected diagnosis. Would be an interesting read. Lindy
I've had nightmare docs - not kidding. I had to bring my hubby so they would listen to me. I approached 10 docs about AP - all but one said it didn't work. All were willing to prescribe Minocin except one - and NONE were willing to learn about it or monitor me on it.
I have to agree with JustSay here - only when I flew out of state for help did I get Xrays. I had to demand certain tests. Some rheumies don't even do the CCP now and that's the 'gold standard'. And we've seen how many docs become mystified if they have a sero-negative person.
The ACR needs some sort of baseline test to be performed on each new patient visit to a rheumy. You'd think they'd push for that - more tests etc. means more $ into the office.
Pip
Pip, as I've mentioned before when I was first diagnosed I was put on AP therapy right away. This was 10 years ago and since then I've had it offered to me by one other RD. I didn't have to fly out of state to receive AP therapy. I was put on AP when I lived in Nevada and then was offered AP therapy when I lived in Az. I have a friend who is a RD in Washington state and she prescribes AP. Maybe it was just the geographic differences and I happened to live in areas where it was accepted and used more frequently. Don't know what the answer is, I can only relate my experiences.
There are certain "baseline" tests for RA. They are the protocol for diagnosis of RA. I don't know why your doctors didn't order the tests. I had them done at the time of diagnosis and then when I changed RD's I had some repeated because the results were over a year old and my current RD wanted to observe any changes.
I hope that we hear from other forum members who have or haven't had testing ordered at their first RD appointment. I can't be the only one who had the baseline testing done.
I don't think you're the only one...I do think you are darn lucky tho. I think in my situation part of the problem is I was too close to a 'teaching hospital'. There's not a lot of experimenting there...totally 'by the book'. The entire area has an aura of 'we're the Great U' and what we says goes! Academia permeates everything in the town.
You may be familiar with it...same hospital that pronounced Michele 'cured'.
Pip
Oh yes, I know which University that you're talking about. I remember well Michele's post. My doctors in Nevada and Arizona are both affliated with Scripps. Not sure what the thoughts at Scripps are re: AP but I do know both these docs have prescribed it.
Totally by the book isn't what I need nor what I want. I want my doctors to think outside the box. My current RD not only treats the arthritic diseases but offers laser therapy for psoriasis plaques. His assistant is certified and does the therapy. I have an appt. on Monday to start laser treatment and it's covered by my insurance. I was afraid they would consider it cosmetic, but the insurance consideres it necessary since my immune system is compromised. There's a chance of infection from the psoriasis. The plaque on my leg is large, red, and raw looking and could easily become infected. All I need now is cellulitis......would really top off my week. When they requested authorization they sent a letter and pictures of the plaque. One more thing to deal with. I'm going to try and talk them into giving me my Remicade infusions and laser treatment at the same time! Lindy
< =text/>_popupControl(); I have had baseline testing done when I was first diagnosed those many years ago...when I moved to AZ...and then when I moved up here to WI. Bloodwork, x-rays, complete physical examination, and more recently a bone density test. Every rheumy is different. It is like if you make the comparison between me and Shelly...her rheumy is not doing the same schedule of infusions as my rheumy is. She has had one infusion and I have had 2 infusions since starting this treatment protocol. I really think it is hard to say how a rheumy is going to treat someone because they all learn differently, comprehend things differently, and also have completely different types of styles and personalities. While it is a shame that there are doctors out there practicing medicine that really should not be, they are given a medical degree whether they graduate top in the class or at the bottom of the class. Maybe careful research into crendentials (like my RD is not only an MD but also has a PhD in immunology so that to me shows a great interest and dedication to his specialty), asking around about the doc (if you happen to wind up in the ER ask the nurses what they think of a doc they will tell you or just plain out ask around to other people), and your gut instinct is what we should think about when choosing any physician. I think it is a colossal waste of our time and our health to have to go thru doctor after doctor until we find the one that is a good fit for us but unfortunately sometimes that is the reality of life.
Here's a question I have been wondering about lately due to an experience in my own life. How many of us feel that depression and frustration can ADD (not CAUSE) to the pain that we have? Can our treatments (when they work) totally take away our pain or do we have to factor in depression and frustration and take care of that also?