Rheumatoid Arthritis 101
February 15, 2022 8:10 AM Subscribe
I've recently been diagnosed with rheumatoid arthritis. I'd be interested in learning what sort of information I should be pursuing, both with my rheumatologist and otherwise. My ignorance on the topic is profound and I really need to learn more about this illness.
I was diagnosed with RA in December, after several months of worsening joint pain. I was fortunate to secure an appointment with a rheumatologist, who diagnosed my RA after about a 2-month wait for initial appointment. As far as I can tell he sees a large number of patients and is exceptionally busy, and my ability to secure additional appointments with him (or otherwise connect with him for questions) is limited. I'm on 400 mg of hydroxychloroquine daily and have been since mid-December, with the doctor not expecting much (if any) response before the 3-month mark. The pain in my elbows, wrists, and fingers is constant and generally seems to be getting slightly worse over time. I'm to see him again in April.
My initial formulation of this question was in the vein of, how I can I maximize my interactions with this busy doctor? On reflection, though, I think that's too narrow in scope. I’ve realized that I entered that first appointment in a state of profound ignorance. I’m generally comfortable advocating for my care, but not when I have to do so while knowing so little about my condition.
If you were in my position – with a newly diagnosed case of (ostensibly) mild RA - what sort of information would you think would be helpful for me to pursue, both within and without that doctor-patient relationship? Without trying to narrow the scope of the question too much, here are some thoughts and questions I've had, to give you a sense of just how rudimentary my knowledge is:
• What sort of change in symptoms should I convey to the doctor? For example, I've developed a painful "hitch" in my right thumb in recent weeks that is worst at night and in the early morning. It hurts to straighten the thumb, so much so that it wakes me up at night when I inadvertently straighten it when rolling over in bed at night. I mentioned this to the doctor in a message through his “patient portal” and was told, in essence, to wait to see if the hydroxychloroquine will take effect. I’m fine if that is the best course of action, but I want to be assertive in stating my needs if I shouldn’t simply accept that statement at face value.
• Can RA symptoms actually improve with treatment? I’ve been under the impression that successful treatment means arresting the progression of the disease (or how I subjectively experience that progression), but that my actually feeling better wouldn’t be possible. In other words, new symptoms wouldn’t emerge (or would emerge more slowly) with successful treatment, but I’ll always be stuck with the baseline symptoms I already have as a best case scenario. It’s a discouraging thought and, if true, something that will be hard to come to terms with.
• What other sources of help should I be seeking out? Therapy? Support group discussions? Physical or occupational therapy? Acupuncture? Pain treatment via cannabis? Finger and wrist exercises? Other exercise? Wearing splints? Avoiding texting on my phone, or excessive typing on a keyboard?
• Are there reputable online discussion forums for RA? Or, books or articles I should read?
I’ve seen several of the other prior questions that seem relevant (example 1, example 2, example 3, example 4), but I’m hoping you can help me get up to speed with this baffling illness from my current position of nearly abject ignorance. Thanks in advance.
I was diagnosed with RA in December, after several months of worsening joint pain. I was fortunate to secure an appointment with a rheumatologist, who diagnosed my RA after about a 2-month wait for initial appointment. As far as I can tell he sees a large number of patients and is exceptionally busy, and my ability to secure additional appointments with him (or otherwise connect with him for questions) is limited. I'm on 400 mg of hydroxychloroquine daily and have been since mid-December, with the doctor not expecting much (if any) response before the 3-month mark. The pain in my elbows, wrists, and fingers is constant and generally seems to be getting slightly worse over time. I'm to see him again in April.
My initial formulation of this question was in the vein of, how I can I maximize my interactions with this busy doctor? On reflection, though, I think that's too narrow in scope. I’ve realized that I entered that first appointment in a state of profound ignorance. I’m generally comfortable advocating for my care, but not when I have to do so while knowing so little about my condition.
If you were in my position – with a newly diagnosed case of (ostensibly) mild RA - what sort of information would you think would be helpful for me to pursue, both within and without that doctor-patient relationship? Without trying to narrow the scope of the question too much, here are some thoughts and questions I've had, to give you a sense of just how rudimentary my knowledge is:
• What sort of change in symptoms should I convey to the doctor? For example, I've developed a painful "hitch" in my right thumb in recent weeks that is worst at night and in the early morning. It hurts to straighten the thumb, so much so that it wakes me up at night when I inadvertently straighten it when rolling over in bed at night. I mentioned this to the doctor in a message through his “patient portal” and was told, in essence, to wait to see if the hydroxychloroquine will take effect. I’m fine if that is the best course of action, but I want to be assertive in stating my needs if I shouldn’t simply accept that statement at face value.
• Can RA symptoms actually improve with treatment? I’ve been under the impression that successful treatment means arresting the progression of the disease (or how I subjectively experience that progression), but that my actually feeling better wouldn’t be possible. In other words, new symptoms wouldn’t emerge (or would emerge more slowly) with successful treatment, but I’ll always be stuck with the baseline symptoms I already have as a best case scenario. It’s a discouraging thought and, if true, something that will be hard to come to terms with.
• What other sources of help should I be seeking out? Therapy? Support group discussions? Physical or occupational therapy? Acupuncture? Pain treatment via cannabis? Finger and wrist exercises? Other exercise? Wearing splints? Avoiding texting on my phone, or excessive typing on a keyboard?
• Are there reputable online discussion forums for RA? Or, books or articles I should read?
I’ve seen several of the other prior questions that seem relevant (example 1, example 2, example 3, example 4), but I’m hoping you can help me get up to speed with this baffling illness from my current position of nearly abject ignorance. Thanks in advance.
Best answer: I'm sorry you haven't gotten more answers. Maybe there's a RA specific chatboard that could help?
I know with my (different kind of autoimmune) arthritis my symptoms and pain go away almost completely when I'm on a drug regimen that is working correctly. When it flares up again it's time to try a new drug, and those start working in about 2 months personally. I wouldn't have lasted 8 months waiting for results, wow. Biologics come with a lot of scary small print, but they've been life changing for me.
posted by travertina at 11:45 AM on February 16, 2022
I know with my (different kind of autoimmune) arthritis my symptoms and pain go away almost completely when I'm on a drug regimen that is working correctly. When it flares up again it's time to try a new drug, and those start working in about 2 months personally. I wouldn't have lasted 8 months waiting for results, wow. Biologics come with a lot of scary small print, but they've been life changing for me.
posted by travertina at 11:45 AM on February 16, 2022
Best answer: I had a close relative with RA. She used to subscribe to Arthritis Today magazine, which is no longer running, but it looks like the organization has messageboards at arthritis.org.
Her rheumatologist was her main doctor, who monitored how well the RA treatments were working to suppress the disease, and if they were causing side effects. She periodically needed to switch. She'd tell the rheumatologist (or the PA, the rheumatologist was extremely busy) about specific problem joints, and if it turned out it wasn't just temporary, she'd get referred to another specialist for evaluation and treatment.
Based on her experience: when the RA is under control, you will feel better. What the RA treatments don't do is roll back damage done to the body while the RA is active, and some of that damage is cumulative. (I don't know how much is known about progression/aging with the newer treatments; my relative was already getting joint replacements by the time biologics became available.)
I also don't know what exercises are currently recommended, but strength is helpful and so is range of motion (and knowing what your baseline range of motion is, so you know and can report if something changes). But exercising while in pain is rough.
RA is a frustrating disease - it can come and go on its own, drugs work and then don't, both the disease and the treatments can cause complications, people can't see when you're in pain or exhausted, and you can do everything right and still get bad results. Which is pretty heavy to deal with, so I do think it would be worth talking to a therapist or support group if you are up for that.
posted by mersen at 8:47 PM on February 16, 2022
Her rheumatologist was her main doctor, who monitored how well the RA treatments were working to suppress the disease, and if they were causing side effects. She periodically needed to switch. She'd tell the rheumatologist (or the PA, the rheumatologist was extremely busy) about specific problem joints, and if it turned out it wasn't just temporary, she'd get referred to another specialist for evaluation and treatment.
Based on her experience: when the RA is under control, you will feel better. What the RA treatments don't do is roll back damage done to the body while the RA is active, and some of that damage is cumulative. (I don't know how much is known about progression/aging with the newer treatments; my relative was already getting joint replacements by the time biologics became available.)
I also don't know what exercises are currently recommended, but strength is helpful and so is range of motion (and knowing what your baseline range of motion is, so you know and can report if something changes). But exercising while in pain is rough.
RA is a frustrating disease - it can come and go on its own, drugs work and then don't, both the disease and the treatments can cause complications, people can't see when you're in pain or exhausted, and you can do everything right and still get bad results. Which is pretty heavy to deal with, so I do think it would be worth talking to a therapist or support group if you are up for that.
posted by mersen at 8:47 PM on February 16, 2022
Best answer: I'm sorry you're going through this! I have rheumatoid arthritis, too, and the first little bit is rough. The pain can sometimes flare up so suddenly and so badly.
The good news is that when you find the correct DMARD ("disease-modifying anti-rheumatic drug"), your symptoms should completely abate, as travertina says! The goal of the drugs is to halt the underlying joint inflammation, which is what causes eventual (as in, years later) joint deformation, and what is currently causing your pain. So when the inflammation is under control (which can be measured doing a blood test for C-reactive protein levels), the pain should disappear too. If it doesn't, there may be another chronic pain problem at play, or an incorrect diagnosis. e.g. a musculoskeletal one, like fibromyalgia.
There are a lot of effective RA drugs out there, so in the course of your treatment, your doctor should have you trying different drugs over a period of months to years until your symptoms completely resolve. For me, it took over a year to find the right combination of drugs, but you should definitely push for eventual full resolution of symptoms (i.e. your rheumatologist should not be leaving you to manage your pain long-term with NSAIDS, for instance).
Unfortunately, in the meantime, you may have to accept your current level of pain until the drug kick-in period has passed — only then can you assess if the one you're trialling is working properly. Hydroxychloroquine is one of them. It's usually one of the first offered because its side-effects are very minimal. During the process of establishing your drug regimen, your rheumatologist will "ramp up" from the mildest possible DMARD with fewest side effects to the stronger ones, since ideally you would take the mildest one possible to manage your inflammation.
A side note: biologics (like Enbrel, Humira, and Actemra) can manage very severe cases of RA wonderfully. Biologics stopped my RA in its tracks when various combinations of hydroxycholoroquine, methotrexate, and leflunomide would not. However, biologics suppress the immune system a bit (as does methotrexate, but less than biologics, I believe) — something to think twice about shouldering with covid looking like it's here to stay. It's a trade-off worth making for me personally, since it improves my quality of life hugely, but definitely something to consider! If I would make sure my rheumatologist had tried all of the milder DMARDs before I started taking a biologic these days, even if that meant a few extra months of pain.
In the "waiting periods" for trialling drugs, your rheumatologist might not be interested in the details of your symptoms — basically it's, "you're going to have varying symptoms until you've hit the point where the drugs kick in, and if you still have them at that point, the drugs aren't working and we switch to a new one." But your rheumatologist should definitely be responsive to you asking for pain management (which might end up being something like NSAIDs or a short course of prednisone) if your symptoms become too severe for you to manage daily living/work!
For now, the most useful thing you can be doing to halt the progression of your disease is range-of-motion exercises. I was sent a rheumatology support group program at my local university to learn these. There might be something like that available in your area, or there may be occupational or physical therapists affiliated with your rheumatologist who can instruct you in these. Range-of-motion exercises are very gentle and don't really need to be kept up once your drug regimen works, but during a period of active inflammation (such as now) doing them daily can prevent you from permanently losing range of motion in your joints. Many people find that they have the most active inflammation in their hands and smaller joints, so it's most important to keep up daily range-of-motion for hands, but YMMV.
Aerobic exercise can be helpful for symptom management via endorphin release/keeping the rest of your body strong and functioning, and it won't harm you. Exercise as much as makes you feel better, and don't push past the limit of your pain! For me, walking and swimming were good (swimming has the added bonus of suspending you in the water and taking the pressure of gravity off your joints). With active joint inflammation, it's not always safe to do heavy weight-bearing type exercises, as that can put pressure on unstable joints — check with a physical therapist first.
In the meantime, any sort of therapy or pain control you can do to make your life easier is definitely valid and a good idea. I use intramuscular stimulation (a form of acupuncture) to relieve the stress that the inflammation puts on the muscles that support the joints; though it won't help the underlying inflammation, massage or Western acupuncture can help with pain relief. In theory a skilled Chinese acupuncturist might be able to help with the inflammation and the disease itself, though it didn't work for me (and of course Western doctors will tell you it doesn't work at all). Cannabis can be good. If you're taking pain medication, you'll have to take breaks at some point to check in and see if your DMARDs are working yet.
Sorry for the information dump. I hope that some of that has answered your questions. If you have any more, feel free to Memail me. And fingers crossed that your symptoms resolve and you feel much, much better soon.
posted by fire, water, earth, air at 10:53 PM on February 18, 2022 [3 favorites]
The good news is that when you find the correct DMARD ("disease-modifying anti-rheumatic drug"), your symptoms should completely abate, as travertina says! The goal of the drugs is to halt the underlying joint inflammation, which is what causes eventual (as in, years later) joint deformation, and what is currently causing your pain. So when the inflammation is under control (which can be measured doing a blood test for C-reactive protein levels), the pain should disappear too. If it doesn't, there may be another chronic pain problem at play, or an incorrect diagnosis. e.g. a musculoskeletal one, like fibromyalgia.
There are a lot of effective RA drugs out there, so in the course of your treatment, your doctor should have you trying different drugs over a period of months to years until your symptoms completely resolve. For me, it took over a year to find the right combination of drugs, but you should definitely push for eventual full resolution of symptoms (i.e. your rheumatologist should not be leaving you to manage your pain long-term with NSAIDS, for instance).
Unfortunately, in the meantime, you may have to accept your current level of pain until the drug kick-in period has passed — only then can you assess if the one you're trialling is working properly. Hydroxychloroquine is one of them. It's usually one of the first offered because its side-effects are very minimal. During the process of establishing your drug regimen, your rheumatologist will "ramp up" from the mildest possible DMARD with fewest side effects to the stronger ones, since ideally you would take the mildest one possible to manage your inflammation.
A side note: biologics (like Enbrel, Humira, and Actemra) can manage very severe cases of RA wonderfully. Biologics stopped my RA in its tracks when various combinations of hydroxycholoroquine, methotrexate, and leflunomide would not. However, biologics suppress the immune system a bit (as does methotrexate, but less than biologics, I believe) — something to think twice about shouldering with covid looking like it's here to stay. It's a trade-off worth making for me personally, since it improves my quality of life hugely, but definitely something to consider! If I would make sure my rheumatologist had tried all of the milder DMARDs before I started taking a biologic these days, even if that meant a few extra months of pain.
In the "waiting periods" for trialling drugs, your rheumatologist might not be interested in the details of your symptoms — basically it's, "you're going to have varying symptoms until you've hit the point where the drugs kick in, and if you still have them at that point, the drugs aren't working and we switch to a new one." But your rheumatologist should definitely be responsive to you asking for pain management (which might end up being something like NSAIDs or a short course of prednisone) if your symptoms become too severe for you to manage daily living/work!
For now, the most useful thing you can be doing to halt the progression of your disease is range-of-motion exercises. I was sent a rheumatology support group program at my local university to learn these. There might be something like that available in your area, or there may be occupational or physical therapists affiliated with your rheumatologist who can instruct you in these. Range-of-motion exercises are very gentle and don't really need to be kept up once your drug regimen works, but during a period of active inflammation (such as now) doing them daily can prevent you from permanently losing range of motion in your joints. Many people find that they have the most active inflammation in their hands and smaller joints, so it's most important to keep up daily range-of-motion for hands, but YMMV.
Aerobic exercise can be helpful for symptom management via endorphin release/keeping the rest of your body strong and functioning, and it won't harm you. Exercise as much as makes you feel better, and don't push past the limit of your pain! For me, walking and swimming were good (swimming has the added bonus of suspending you in the water and taking the pressure of gravity off your joints). With active joint inflammation, it's not always safe to do heavy weight-bearing type exercises, as that can put pressure on unstable joints — check with a physical therapist first.
In the meantime, any sort of therapy or pain control you can do to make your life easier is definitely valid and a good idea. I use intramuscular stimulation (a form of acupuncture) to relieve the stress that the inflammation puts on the muscles that support the joints; though it won't help the underlying inflammation, massage or Western acupuncture can help with pain relief. In theory a skilled Chinese acupuncturist might be able to help with the inflammation and the disease itself, though it didn't work for me (and of course Western doctors will tell you it doesn't work at all). Cannabis can be good. If you're taking pain medication, you'll have to take breaks at some point to check in and see if your DMARDs are working yet.
Sorry for the information dump. I hope that some of that has answered your questions. If you have any more, feel free to Memail me. And fingers crossed that your symptoms resolve and you feel much, much better soon.
posted by fire, water, earth, air at 10:53 PM on February 18, 2022 [3 favorites]
Response by poster: Thank you for these helpful answers. I appreciate it.
posted by cheapskatebay at 5:54 PM on February 20, 2022
posted by cheapskatebay at 5:54 PM on February 20, 2022
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Hydroxychloroquine took a while, like 8 months, to work but it's been freaking magic for me overall. I also have celebrex to treat the joint pain, which seems like it would be a reasonable thing for you to ask for.
My rheum is super in person but less responsive over the patient portal. I'm keeping a notebook with a list of things to show/talk about at the next appt, and where I can take notes. But I'm kind of new at this too.
posted by Dashy at 8:44 AM on February 15, 2022