20 Tips for Managing Your Rheumatoid Arthritis Treatment
Managing your Rheumatoid Arthritis as a partner with your doctors
I’ve answered so many questions from people with rheumatoid arthritis (RA) /rheumatoid disease (RD) who are unsure why their rheumatologist makes certain decisions. Why does she or he prescribe a certain medicine? When do I need that test? Should patients cooperate blindly with the doctor? Or discretely refuse to comply? Wouldn’t it be best if you were managing your rheumatoid arthritis together with your doctors? In truth, patients are the ones actually are managing their disease day to day.
Wouldn’t it be better if there could be a productive discussion? I know that communication is not always perfect between patients and doctors. We have plenty of suggestions for how doctors can improve their part. However, here are some things that we can do to to promote a productive relationship while managing your rheumatoid arthritis.
- 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 your rheumatoid arthritis is affecting your work at a job. Be specific about what you are unable to do due to RA.
- Convey specifically what rheumatoid arthritis symptoms prevent you from doing at home, too. This should include self-care and daily chores.
- Tell the doctor where it hurts. (Mine don’t ask, but they should know).
- Obtain copies of reports for all diagnostic imaging such as x-rays. Bring copies to relevant appointments. 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 your 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 like a crazy hypochondriac. Neither do we want to make requests that may make us appear pushy. It is much easier to advocate for others.
However, you should approach managing your rheumatoid arthritis in ways which are respectfully assertive. We should all be as clear and specific as possible when we discuss RA symptoms, RA treatment, or other RA-related problems. 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
Edit: Updated image 3/30/17.
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.
Much has been written here on the blog by me and other patients about this issue of the “privacy” of pain with RA since this post was made. It is related to the stoicism that surfaces in many patients not long after diagnosis. There is a good new comment related to this below by Jennifer. Readers should see below: https://www.rawarrior.com/20-tips-for-managing-your-rheumatoid-arthritis-treatment/?show=comments#comment-118417
What? Lucy had RA? For some silly reason that makes me feel better. Thanks for that little nugget of trivia.
lol. yea, she was one of several stars who hid RA. I always had such a love for her & I never knew about it.
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. :chic:
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
Hi Kelly,
Do you have any thoughts on Focal inFection Theory?
Thanks
Paul
Honestly, that is a new one to me. I’ll look at it. Is this something that you support?
I cant find proper research on it so I am a bit sceptical ie there arent any double-blind randomised trials whose results have been published in leading reviewed academic journals…(!) However my RA started right after having a very nasty root canal so I am interested in trying to establish whether this theory might have any validity.
16-year remission of rheumatoid arthritis after unusually vigorous treatment of closed dental foci: link
Paul
Paul, there are several theories about possible triggers for RA. You are right, this is not one being given much attention – possibly because they do not see merit. I don’t know. Also, a single case that is strange can sometimes be due to a misdiagnosis. And spontaneous remissions of RA are possible too, although rare.
Awesome. The 20 tips are just great as a newbee to this website. I am so glad I found it and learning so much about RA, how to document and handle at this time. Thank you for putting your time and energy into this website.
Thanks Darlene. I hope it helps you. 🙂
I wish docs would give you instructions like this when you are diagnosed! What about a little fact sheet of items that make life easier?
This is probably silly since I bet everyone here knows this but, if you haven’t yet gotten yourself a memory foam topper for your bed just do it! They are wonderful. I know the full mattresses that are memory foam are very, very expensive but, you can buy just a topper even online Go for the thickest one. Mine is four inches thick. I could not sleep through the night without it. Docs need to include in any info when you are diagnosed a little list of helpful items. I carry a memory foam pillow when I have to travel. Getting stuck in an airport doesn’t mean I have to sit for hours on a hard seat anymore.
These days I ask for the wheel chair when I have to travel too. Getting stuck walking five miles between gates or up and down stairs…it gets down right dangerous at times.
RA docs, could have a little sheet of items their other patients have found useful. Tips like these are invaluable. Love the alligator! It’s useful and means something to others when you describe your RA.
Love this, especially the “tell the Doctor what hurts.” I’m from Maine. We’re kind of a stoic kind of folk. We don’t talk about what hurts. We take pride in being able to do for ourselves. Just recently, I was talking to my boyfriend and telling him that I am not 100% honest with my doc. He looked me in the eye and said, and how do you expect her to do her job?
Oh yeah. That.
I made a list. I made it in red ink. She came in and said, uh oh, you have a list. I told her about my stoicism problem. She listened, and then really listened to what I have to say. I talked about what I cannot do anymore. What I can do sometimes.
It seems like a simple thing, to say, tell your Doctor what is going on. It’s not always an easy thing to do. You know what though? RA doesn’t fight fair; it has the help of a whole host of crap (fatigue, swelling, pain in myriad forms) and if it’s going to bring an army against me, well alright then. I’ll get a bigger one.
This is right on target Jennifer. I was saying something similar to someone on the phone yesterday. Great points to bring up here.
This is so right on target. I have such a history of 1) not speaking up when something is wrong and 2) not being proactive enough to speak up when I know the health care provider is headed in the wrong direction.
From now on I am making a pledge to myself to be an empowered patient. It’s silly, I work in health IT and know that the doctors can’t do their job if you don’t tell them what’s going on. However I think we develop a high pain threshold and I get so tired of talking about what’s wrong. Thanks to all of you who share your thoughts, you’re an inspiration.
yes, I’ve been there too. A high pain threshold with RA is commmon & thats what we do… we just tire of it and try to ignore as much as we can so we end up not being as proactive as we should. We all have times like that – but we need to kick ourselves in the behind & take care of ourselves as much as possible.
I’ve had rheumatoid since I was 17 and am 47 now. I do most of the things on your list – especially getting copies of everything! One thing thats really helped me lately is to carry a small notebook, one that can fit in my purse, at all times, and keep logs on what happens. I bring the book to my appt and write down notes on what the dr says and what I and/or the office needs to do in the future. It really helps.I bring the notebook to the next visit and I have a clear list of what was supposed to have been done or what was discussed. My Dr actually complimented me on my organizational strategy!
great tip! thanks 🙂
All great ideas Kelly. I also suggest looking for an online personal healthrecord.I work with one that uses my community resources and also links to Microsoft Health Vault. I’m able to get and store my labs and immunizations, and enter my meds among other things. It also links to a knowledge base.
very timely suggestion! discussion of the Blue Button on today’s new post! 🙂
Have you heard or have you any experience with the LDN low dose Naltrexone? A family member heard a radio show with Julie Shlipock I think her name is and if you gooogle just LDN it comes up as effective for RA and FM. Just curious and thanks for all the info
I have not read anything positive about it from the scientific community Norma, but I have heard a small number of patients say they thought it helped them.
The hardest thing about treating rheumatoid disease is that we are not all the same – someday we might even discover different types of what we now think of as one disease – or perhaps the genetic differences between our immune systems will always require different treatments.https://www.rawarrior.com/the-immune-fingerprint-and-rheumatoid-disease/
Also, FMS is not considered an immune system disease, but a pain disorder – there is a lot of confusion there too, and a lot of misdiagnosis.
So often, after I read the comments, I feel better. I must start my LIST today. I have just had spine surgery this week and wil be slowly getting back on my RA meds…. Thank you as always for keeping us informed.