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What is my rheumatologist supposed to be doing?
#265839 04/24/14 01:29 AM
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I'm currently working with my second rheumatologist and so far I can see they have done little besides refill my prescription. They appear as if they want to monitor my pain levels (I'm 37 and on my 9th year with AS and the pain seems to be gradually moving up my back and I get more peripheral pain each year). But when I tell them they always have a non AS reason for why I'm in so much pain (tendonitis, myofascial pain, worn cartilage, blah, blah, blah) and insist that Enbrel should be eliminating all of the inflammation. I'm wondering if my expectations are just too high. My thought was that they would teach me about my disease, help me pick medications that work for me, and send me to people who can help me cope with chronic pain. But I feel like I know more than they do about AS, I'm concerned that my drugs are not working very well, and I'm learning how to cope with pain on my own. I'm wondering if I should keep searching for a better Dr or is this what they typically do. So my quesion is: How does YOUR rheumatologist help you manage your disease?


AS since 2005 -finally diagnosed in 2011. Gastroparesis since the 90's -finally diagnosed on 2011.
Re: What is my rheumatologist supposed to be doing?
Cyclesfemme #265841 04/24/14 02:25 AM
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If you are not getting what you need from your rheumy then I would be looking else where. I was blessed to find an amazing doc,. he isn't always the most personable man, slightly narcissistic but it is well deserved.

I would be using this doc to get everything you'll need for a "second opinion" Getting new lab work MRI of your problem areas ect that way you'll have new results to show a new doctor and it can be getting done while your finding that doc. KWIM?

Hope this helped a little. I am very new to not just this message board but to AS

Sara


Sara 37 y/o married 12 years to Danny, mother of 3. Shawn 19 Joey 11 and Erin 9.
Dx Chronic Epstein Barr, BiPolar since age 14
Seronegative Ankilolsing Spondyloarthropathy 2014
tendonitis bone spurs Costochondritis
Remacaid suspended for prolonged fever and kidney infection
MTX and folic acid
Re: What is my rheumatologist supposed to be doing?
Cyclesfemme #265849 04/24/14 01:32 PM
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Any person is more anxious without information. It sounds that in your case you have specific goals in mind. Can you tell us what those are and perhaps get some sound advice on how to handle those issues. Each of the Dx you listed on their own can cause discomfort and pain. Perhaps people here will have some helpful thoughts.

About your Rheum how does a typical visit go? How long have you been taking Enbrel without success? Was it ever helpful? What medications do you use now or other non med treatments? Are you near a major city up there in the wilds of winter?


Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: What is my rheumatologist supposed to be doing?
Cyclesfemme #265898 04/24/14 11:53 PM
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I am feeling the exact same way! I feel like they should be educating me on what's going on with my body as far as this disease is concerned? For example, I had to ask after 8 years "At what point do we do another xray or MRI of the SI joints to see if the disease has progressed, and if so, how far?" He just answered "Uh, yeah. I can order that. And when the xray came back, it had progressed. Not fused, but then I want to know more! I didn't go to school for this! I'm not the one getting paid for this, HE is! And it isn't that simple to switch specialists like that. Especially these days.

I completely get where you are coming from, Cyclesfemme. I'm sorry I couldn't answer your question, though.


Shammy
Re: What is my rheumatologist supposed to be doing?
Cyclesfemme #265905 04/25/14 01:56 AM
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For any of it's incumbent to learn. At first we are overwhelmed and along the way new information and medications come forward. We must learn along with our doctors how best to treat us. That said, if we get ourselves to good doctors we are halfway there in forming trust. Still then, we should develop questions with family friends which reflect our concerns.

"Hi doc these are my questions". We will ask questions which he/she has already thought about and sometimes give a better understanding to them of when we hurt what we do for it and where our journey has led us.

If you feel dismissed, brushed off don't allow it. If it still goes on move to another doctor. If the office staff is rude, let them know that is unacceptable. " I'm sorry I felt dismissed and unimportant, did you mean for me to feel that way"

An assertive philosophy of taking care of ourselves means being informed and making choices based upon our current knowledge. Ask questions, e.g. why is this biologic better than the others for me. "I think it's best" is ok but ask why is it best for MY circumstances? Insist politely on getting answers. WE are responsible for creating a workable relationship with an engaging smart doctor.

In the years ahead this strategy will be very important as MD's are being discouraged from selecting expensive treatment modalities. Insurance companies are aggressively encouraging MD's not to order tests which are costly (CT MRI). You have the right to insist that you want the test done. It does make a difference. Don't fear the authority, respect it and politely ask questions.

Be informed and carry your pen and paper. That list of questions will lead to more questions which you can ask at another appointment. Empowered you will feel better and your doctor will respect your questions. If he/she does not respect them then you are in the wrong doctor's office.

Be polite and bold. It is up to US.

Last edited by WhiteCell; 04/25/14 01:59 AM.

Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: What is my rheumatologist supposed to be doing?
Cyclesfemme #265946 04/26/14 02:55 AM
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Thanks for the helpful responses so far.

I guess I'm just looking for what a "typical" appointment is like and what your doc does for disease and pain management. I have an advanced degree, I read medical journals, and I'm extremely aggressive in the dr's office (so much that I aggravate my drs). But I want to set my expectations accurately. If a "typical" appointment is "where does it hurt?" and "do you needs more/different meds?" then ok, I can set my expectations low and I don't need to find a new doctor.

Is there anyone out there that gets educational information from their doc about their disease (like what to expect at 10, 20, 30 years) -or do you educate yourself?

Or are sent to a pain clinic or something to help with pain management? -or do you learn how to cope on your own?

Or, at your appointment, do you just get a look over and some drugs?


AS since 2005 -finally diagnosed in 2011. Gastroparesis since the 90's -finally diagnosed on 2011.
Re: What is my rheumatologist supposed to be doing?
Cyclesfemme #265947 04/26/14 03:22 AM
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Mind you I haven't had the best luck with rheumys, but at a typical appointment he gives me a chance to discuss current issues/concerns and discusses how meds are doing. Seems to be a lot of watch and see what's going on. He will answer if I ask questions, but rarely offers too much information. I think due to time constraints they often do not get into enough detail. I also think that they approach it like you would a child; don't give more information than they are ready for. That is perhaps why they answer questions but don't always go into to much detail otherwise. If you come prepared with questions(even if it's a general question of "How do I learn more about my condition"?) and you dr doesn't address your questions, it may be time to consider a new dr. Best Wishes


Age 61. AS dx'd at age 57
HLA-B27+,iritis/uveitis periodically since 1970, diabetic
Meds. naproxen and muscle relaxer(as needed)
Re: What is my rheumatologist supposed to be doing?
Cyclesfemme #265950 04/26/14 02:01 PM
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Not to sound sarcastic, but if you have a doc who can tell you what is going on beyond next week, let alone 10 20 30 years please pass his name on.

To be blunt the only thing a rheumatologist has to sell is his time. Very few have procedures to sell. Consequently their incomes are among the lowest of the sub specialties. His time is sold in 15 minute increments and coded appropriatly. He would spend all day with you if you paid for it. They are like lawyers. Small talk costs the same as hard information.

A typical appointment is a 15 minute follow up. You symtoms are generally filled out in your pre appointment paper work. These days a scored questionaire is generally used now last time yoy may have had a sore wrist and this time a sore knee. Its a weighted score. If its not higher than last time, he isn't going to worry much. If its lower he will celebrate. If there is problems he is going to assume you reported them to his nurse during the check in and interview as she opened your chart. He will do a quick physical exam. Depending on your disease course this may be as simple as as spot on one knee, ankle or by that bump on your wrist. How those spots palpatate will give him as much information as an MRI. He will often check the same spot at the same time on both sides of your body giving him more information. From this, your nurse interview, your survey score, he will then ask you appropriate questions or make a bit of smalltalk. He will the order any labs necessary.

There will be time for questions, but very little so be organized. If you want an extended discussion now is the time to SCHEDULE IT.

Don't assume he will do pain management etc. This is a long term disease. Few rheumys will treat anything more than the diect symptoms of the disease ie inflammation. They as a whole do not often prescribe pain medication except for a very acute situation or for that matter believe in pain management at least until they have followed you for a year or more. You will have to ask.

I will tell you now, the most important person to connect with is his assistant.. We have a few who save it for the doctor. That is a huge mistake. Fill the paper work out completley. In this age of evidence based medicine, the doc can't hardly do anything unless there is "evidence."

Re: What is my rheumatologist supposed to be doing?
Cyclesfemme #265954 04/26/14 04:29 PM
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My rheumy spent more time at my first appointment to explain about my condition, and she gave me several pamphlets, one on AS, one on DMARDs, etc. At subsequent visits she (or the nurse practitioner) generally asks where I'm hurting, do I think the meds are helping, do I have any questions or concerns, etc. When the subject of biologics first came up, she gave me a pamphlet on Humira. My visits alternate-rheumy one time, NP the next, etc. I have never felt rushed by either of them. They ask if I have questions, and don't mind followup questions. But at the same time, they don't throw a lot of information at me if I don't ask. My sense is that a lot of patients get overwhelmed if too much info is offered, so they don't offer more than basic info unless the patient asks.

I second tntlamb's advice to develop a relationship with the rheumy's nurse/assistant. When she does her workup at an appointment she asks questions and makes notes on my chart for the rheumy to see. The NP has an assistant too, but the rheumy's assistant is the one I always call if I have questions between appointments. I usually get her voicemail, leave my question, and usually get a call back within a couple of hours.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: What is my rheumatologist supposed to be doing?
Cyclesfemme #265963 04/27/14 12:56 AM
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I have never felt rushed by my rheumatologist or her nurse but after my initial visit and diagnosis I feel that she doesn't take me seriously. If I tell her that I don't feel that my NSAID is working she tells me to keep taking it. The only med she has prescribed for me is Cymbalta for pain modification, everything else was prescribed by my pcp before my rheumatologist referral.


Poppa John:
Symptomatic since 1988, diagnosed with Spondylitis, Fibromyalgia, probable IBD March 2013. HLA B27 neg. Sacroillitis, Osteitis, Fibromyalgia
Fused T 2-12, Fused C 5-7, HNP L4-5 with laminectomy/discectomy 2014.
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