20 Tips for Managing Your Rheumatoid Arthritis Treatment
Management of Rheumatoid Arthritis as a partner with a Rheumatoid Arthritis specialist
I’ve answered so many questions from RA’ers who are unsure why their rheumatologist makes certain decisions. Why does she/he prescribe a certain Rheumatoid Arthritis medicine? When do I need that test? Should RA’ers cooperate blindly with the doctor? Or discretely refuse to comply?
Wouldn’t it be better if there could be a productive discussion? I know that communication is not always marvelous between patients and doctors. We have plenty of suggestions for how doctors can improve their part. However, here are a few things that we can do to have the best stab at a productive relationship.
- Get lab work completed promptly. Request your own copies. Keep them in a file with all of your test results.
- Look up information about lab test results online to become familiar with what the terms mean.
- Ask the doctor to explain exactly what any lab test indicates. If you don’t understand test results, ask him to explain them to you.
- Always bring an updated list of your medications and any major changes in health-related factors.
- Ask the doctor to explain exactly what any prescription is intended for and what the benefits are for you.
- Specifically discuss anything that you suspect to be a side effect of RA medicines.
- Bring a list of the top 2 or 3 things that you want the doctor to address during an appointment.
- Bring a notebook to write down instructions from the doctor or details you may want look up later.
- Ask questions about anything you do not understand. Be understanding if he/she needs to schedule another appointment to discuss lengthy questions.
- Bring someone with you to help you to remember any details or provide moral support.
- Clearly explain to the doctor how Rheumatoid Arthritis is affecting your work. Be specific about what you are unable to do due to RA.
- Convey specifically what Rheumatoid Arthritis symptoms prevent you from doing at home.
- Tell the doctor where it hurts.
- Obtain copies of reports for all diagnostic imaging such as x-rays. Keep them in a file. Make sure that you understand the reports. Ask questions if necessary.
- Forward any reports from other doctors that you are seeing if they are at all relevant.
- Politely request copies of doctor’s notes so that you can see his impressions of each visit and your case.
- Ask him /her about any comments in your file that you do not understand or with which you do not agree.
- Always bring any insurance identification and documentation. Communicate with office manager about any outstanding balance so that they know you are being conscientious about your account.
- Follow office rules whenever possible like wearing no cologne or rescheduling appointments in a timely manner.
- Learn as much as possible by reading about Rheumatoid Arthritis in reputable books and websites.
The difficult job of managing Rheumatoid Arthritis treatment
It’s not easy to be an advocate for ourselves. It’s hard to tell others about the Rheumatoid Arthritis pain that we fear makes us sound hypochodriacal. Neither do we want to make requests that may make us appear pushy. It is much easier to advocate for others.
However, we must approach our Rheumatoid Arthritis management in ways which are respectfully assertive. We need to be as clear and specific as possible when we discuss RA symptoms, RA treatment, or other RA-related issues. We also need to be well-informed so that we can make objective decisions which will be best promote our health.
Recommended reading:
21 Things to Know About Finding a New Rheumatologist
Causes of Rheumatoid Arthritis: Are There New Clues?
Medical Records Tip for Rheumatoid Arthritis: Read the Doctors’ notes
What is Remission of Rheumatoid Arthritis? Part 1
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Kelly,
Thanks for the great list! I think 12 and 13 are especially important. And doesn’t using the 1-10 scale of pain help? I think docs respond well when we can be more objective about pain levels.
Thanks,
Barbara
Definitely. An objective pain score goes a long way on the other side of the table. You can always keep your objective pain score ready when you come to the clinic.
Kelly, we need a athlete or some movie star to advocate about RA, I was reading about different dieases that others have and all the support they have out there on research, we need more research done on US…. I really get frustrated that there is not more done…… it does not seem like RA is really studied as it should be, in reality when they say only 2 million people in all of the US have RA, that is not a lot of us, so I sure wish they would do more before there are many more who find they have it as well~
Ves,
There has been a lot of discussion about that. Here is one place I discussed it. You are not alone in your opinion that we need a “star”. We can’t help feeling like it would help. Maybe we haven’t had a really big star come forward in a bold way because of how much “shame” is associated with RA / autoimmune disease. (By the way, I DO NOT PRETEND TO UNDERSTAND why we have to have that; yet I hear it everywhere.)
I am not aware of there being “shame” associated with RA/autoimmune disease. What do you mean? Thank you for the list, this is very helpful.
Maybe I used the wrong word. Look at comments # 34 & 35 on this post, where it was mentioned. Maybe I should write a post about this. Apparently, there was a great deal of this with Lucille Ball, one of the biggest “stars” with RA.
I have heard that Bonnie Hunt’s sister has RA. She has mentioned it on her daytime talk show. This is from her bio on the site:
“Bonnie continues her charitable work, raising funds to sponsor research for treatments and cures for cancer and rheumatoid arthritis, and also gives time to support organizations such as The Make-A-Wish Foundation, The Christopher and Dana Reeve Foundation, American Veterans and The Robert H. Lurie Comprehensive Cancer Center.”
I was diagnosed in Feb. 2009. I have been reading this blog as well as some others. They are a great help. I don’t feel so alone anymore. Thank you for that.
I didn’t know that! I’ve always loved Bonnie Hunt in movies. Wouldn’t she be a great advocate to have.
I had never thought to tell my doctor what I am unable to do. I think that is a wonderful idea and great indication of how the disease process is continuing. Also it can lead to additional resources to help in our every day lives. Like for me not being able to do the laundry, it would be great if someone could teach me how to do it pain free! The bending and lifting is the problem. Thank you for the wonderful tips. I also suggest that people research about their medications so that they are well informed as to what is normal and what is abnormal and requires immediate medical attention. I prefer the website rxlist.com I also enjoy the different associations per each disease and even mayoclinic.com
Best of wishes.
Taming an alligator is a good comparison. You can’t tame an alligator and you can’t tame RA. Both keep being dangerous. But you can do quite a lot, that both of don’t bite you.
Congratulations for your 20 Tips!
I regularely send a copy of the letter to GP to my patients. The university clinics do so, too. But it isn’t usual. Our hospital has been the evaluation center when effects of patient education was studied. So we might have another view. Patients should be managing their disease, with the help of their specialists, of course.
I always advocate sending copies of correspondence to the people, the correspondence is dealing with. Hope this encourages patients to actively ask for a copy.
See you later, alligator
Lothar
Very well put. Thank you.
Just goofing off here, Hey Kelly, being there are so few of us with RA and actually have been this informed on the subject since the introduction of the internet, maybe we are a speical lost tribe …… maybe we are all related and it was our ancestors that had the first case of RA and passed it down to us in their genes….. darn that Eve…she prolly picked the apple that carried the RA genetics in it….. I am just having a silly day and wanted to share it!
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Hi I have a question, is there a way to print from your site like the above article, it would be easier for me to have it printed out so I can look at the things one at a time and do some research. And the one with the suggestions for the new rheumy dr. I believe I will have to be doing this soon. I just want it for my own personal use. Thank you Cathy Wester
Cathy, I think if you use the little printer icon on your computer or type “control p” then it will print whatever page is on the screen. I do not have any special setup for that right now.
It’s fine to use my articles for “for personal use” as you said. I only want people to be sure that my name and copyright statement remain attached to the article.
Thank you, that did the trick. Cat
Hi Kelly, thanks for all the information. It’s really helped!
I got my diagnosis last month and have been suffering since august last year. I think you are an inspiration to us all.
I live in England and don’t know any other RA’ers, so it’s been good reading all your info.
I hope you’re not suffering too much at the moment, take care, Kelly