To prepare for the appointment the first thing I did to find information was to ask fellow members in an online RA group about treatments they had used successfully. I got this answer "My primary care physician prescribed a paste called triamcinolone .. that seems to work overnight for me. I think it came in a 0.1% paste. It really helped me. I put it on right before bed because it is pasty and gritty...but did the trick."
Next I checked Dr. Irwin Lim's blog called BJC Health's Connected Care. He's an Australian rheumatologist who practices in a team setting in Sydney, Australia. I knew that one of his most popular posts ever was about methotrexate, so after reading it again I asked him about mouth ulcers and MTX in the comments section. He said he uses folinic acid and sometimes lowers the dosage in his patients.
At the doctor
That meant that when I walked into my doctor's office I already knew a lot about the issues and possible solutions. These prior interactions gave me an understanding that seemed to be well founded. When the doctor suggested trying an alcohol free mouthwash I was confident enough of my information to request what my friend suggested and others validated.
That meant that when I walked into my doctor's office I already knew a lot about the issues and possible solutions. These prior interactions gave me an understanding that seemed to be well founded. When the doctor suggested trying an alcohol free mouthwash I was confident enough of my information to request what my friend suggested and others validated.
Thank goodness I did not have to try to convince a friend who is in healthcare that it was a good treatment. She's a skeptic who said "The sores were probably getting better already" when I told her how well it had worked.
Thinking back to my past history of doctor visits I used to be ready to accept the first solution or idea presented. In some cases that led to more visits. Being a meek and uninformed patient seldom helped me.
Being an active participant in your own care may come naturally, but it was a skill I had to learn. Reading online journals, articles and about the experiences of other patients in forums and blogs helped me to gain confidence in myself. Now even when I'm not asked I join the discussion and ask questions as well.
Strong and active patient
With this collaborative approach I see my doctor less often. It took me until now to notice how much of a change there has been from the early days. This week it seemed so clear that things were different.
Here is what Stephen Wilkins says about two different ways of looking at what is popularly called patient engagement (which means the active involvement of the patient), and who benefits from these approaches. His ideas about two outlooks he has observed in health care ring true to me. Are we engaged as patients "to advance our activation, quality of care, clinical outcomes and the patient experience" or is the intention to make us a source of cheap labor?
We'll keep our eyes on that issue.
Here is what Stephen Wilkins says about two different ways of looking at what is popularly called patient engagement (which means the active involvement of the patient), and who benefits from these approaches. His ideas about two outlooks he has observed in health care ring true to me. Are we engaged as patients "to advance our activation, quality of care, clinical outcomes and the patient experience" or is the intention to make us a source of cheap labor?
We'll keep our eyes on that issue.
Human centered is another way to look at part of the patient and physician interaction. Not patient centered, not doctor centered, not payment centered, but human centered. As we act like neighborly humans in our interactions, we will migrate through several roles during the engagements (learner, teacher, consumer, consumer coach, steward of scarce resources, citizen, dog owner, patient, physician, life coach, etc.). I look for the human element in the patient and in me (I'm a Family Physician) so we start human and finish human to the extent possible in each encounter. Equals who care like neighbors should.
ReplyDeleteHuman centered makes sense to me, but it is hard to reach that point with some doctors until you have seen them a few times. Another way that things have changed is that as my experience widens I am able to add value to the conversations myself. That's part of what you are saying when you say human to human I think.
ReplyDeleteDo you find your role as steward of scarce resources difficult? In Canada doctors are often gatekeepers and are being urged to help to conserve resources by the payor, which here is the government/taxpayer.
Thanks for the meaningful comment.
Hi Anet
ReplyDeleteI use folic acid as standard. Folinic acid is more expensive and usually not needed, so I only use it sparingly.
With the "less serious" side effects to Methotrexate, I do try to increase folic acid supplementation, or swap to folinic acid, or reduce the dose of Methotrexate or actually stop the Methotrexate and try a different strategy.
Thanks for the adding more information about using folic and folinic acid. I have used 1 mg folic with methotrexate all along. If I continue to have sores I will talk to my rheumatologist next time about Folinic acid. That's a prescription drug here in Canada.
ReplyDeleteI told my Australian friend about your blog and she was delighted to read it.
It's great to get the depth and background on treatments and choices that you put in your blog. It seems to be what we might hear from our own doctors if they ever had enough time. Having facts written down also makes them much less "slippery",that is they are easier to remember and digest in print.