Rheumatoid Arthritis is a big, serious thing, that a lot of people don’t understand very well, and which looks terrifying once you do understand it. The important thing to remember is that it is treatable, and treatment can drastically improve how you feel day to day. I’ve had bad treatments that made me worse, and I’ve had treatments that gave me my life back for a while. I have some days with little pain. This may feel like the end of the word, but it isn’t. That said…
Do what you need to make it work for you. Lots of people will tell you lots of things, and all I know is that the reason so many treatments exist is because not every person gets sick in the same way, and not every treatment works for every person. There are lots of good options, and if one isn’t working, it’s okay to switch to another. In fact, it’s best to switch, because there are dozens of options, and it may take some time to find the right one for you.
Diet may help, but it is an answer, not the answer. Exercise may help, but only if you can do it without increasing your damage. Medications may help, but not if they’re making you sicker. If something is making you worse, it’s time to change.The best thing you can do is form a healthy connection with your caregiver and keep researching to know what your options are.
Any advice I give you is going to come from what works for me, and I know that my situation and your situation may have commonalities but they are not identical. It’s okay for you to find something that works for you that didn’t work for me, or for you to not like something that I do like. The important thing is to keep the damage to a minimum, and make you as comfortable as possible.
Here’s a list of things I’ve tried:
Gluten free: For me, this is essential but mostly because I’m allergic to wheat and get migraines. Worth trying for 6-8 weeks, then adding wheat back in and seeing if things change. Don’t let that process stop you from trying other things.
Low carb: Mostly for me this is a response to steroid-induced diabetes. Some people find it helpful.
NSAIDS: Great if you can take them, but will never be your only option, and many people stop being able to take them after a while. I can’t take them at all.
DMARDS: “Disease modifying anti-rheumatoid drugs”
Steroids: Best done for short periods if possible, frequently used for flares) Medrol has marginally fewer side effects than Prednisone due to less impact on the liver. Prednisone is the default.
Methotrexate: Usually a stepping stone, injections have fewer side effects than pills, can be pretty miserable, works for a few people, insurance may require you start here. Tell doctor immediately if it’s making you worse. If it’s not making you better, they may add a biologic.
Leflunomide (Arava): Better tolerated than methotrexate for many, more expensive, works for some, most often used in conjunction with other meds. Pay attention to your peripheral nerves, this drug can cause tingling and numbness in your feet and hands and nobody talks about it except the package insert.
Plaquenil, hydroquinolone: I couldn’t do these because allergies, but they are common and work well for some people. Can be used with biologics I believe.
Biologics:
There are a lot of them, they are obscenely expensive, most companies will pay your copay for you so don’t let the price stop you at first glance.
Tumor necrosis factor inhibitors (TNF) are the first big group and the one most people start with. There are versions created from non-human sources and versions created from human cell lines. The latter may bet tolerated better if the others fail. Your insurance may require you to move through these in order. You do not have to fail every drug in the category for your doctor to decide to try a drug in a different category.
Some examples I’ve personally dealt with include:
Enbrel: Injectable, helped me 4 days per week, was given once a week, probably would have stuck it out if they’d been able to dose it higher.
Remicade: Infusion in the doctor’s office: It sort of kept things to a dull roar, but wasn’t great.
Simponi Aria: This was terrific while it lasted, but when I went off it for a surgery, I had a bad systemic reaction that was not understood quickly when I went back on. Many biologics are big complex molecules the body will turn on if given a chance. I’m still sad about this one.
So failing 3 TnF inhibitors, my doctor shifted me to a Janus Kinase inhibitor:
Xeljanz was terrific during the 3 weeks it overlapped with my simponi aria, and mediocre for the next year, and made me vulnerable to a lot of infections.
Rinvoq is in the same class and did not help.
Note that Xeljanz and Rinvoq are not as likely to promote the immune reaction that the others are, because they are smaller molecules taken orally. “JAX inhibitors” is what they’re usually called.
I’m now on Orencia, which is another infusion, but it blocks a different pathway. mumble mumble T cells? B cells? I forget. Anyway, it’s a fast infusion, takes a few weeks to work. I’m like ehhh 12 days out and just starting to have more energy and less pain.
My doctor says we have two more major categories to try if I fail this one. If that happens, we may start doing some mix-and-match that wouldn’t normally be recommended (in part because I had terrific responses to being on a TNF inhibitor and a JAX inhibitor at the same time, but that increases cancer and infection risks.)
Herbals and other things
There are herbal medications which can help, but they are generally not sufficient alone.
CBD: Many people report this being effective for pain, but there is a HUGE caution if you are on blood thinners or drugs with a liver pathway for clearance, as CBD interferes strongly with multiple liver pathways. We actually did blood tests to demonstrate this in me personally and it made my anticoagulation levels increase. You need to compare every drug you’re on to CBD if you’re going to use it.
Turmeric
Tart cherry
Ginger
Black pepper
and a wide variety of other fruits, vegetables, spices and herbs can all help lower your inflammation levels. Fish oil (but better to eat salmon, sardines, oysters) can also help. These are no cure–I was literally on them when I got sick, but I’ve had days without these things and days with and I prefer the days with.
I take milk thistle and dandelion to help stabilize my liver and help it cope with everything I throw at it.
I take CoQ10 to help with inflammation, among other things.
I take magnesium to help keep everything more relaxed.
I take vitamin D because I live in Oregon.
I take Alpha GPC and Citicholine because they help make my brain make better neurotransmitters.
You will hear things like “Sugar is the enemy!” and “Plants only!” and other people saying, “You must go paleo!” or “Keto is the only way.”
All I know is that I need food to live, sugar makes me feel bad, sometimes vegetables and meats do too, and there are days when life is not worth living if I can’t have a goddamn sandwich with mayo. I try not to eat foods that taste like future pain. I try to keep my relationship with food civil.
Physical therapy and osteopathic adjustments are the things that save my life right now. Because a lot of times those practitioners can figure out what’s hurting, figure out why it’s hurting, and fix it. Not all pain is the same, and if they can get rid of most of it, the rest of it is easier to cope with.
Get the assistive devices you need to cope with your worst days. For some people that’s a cane or a walker. For me it’s a lightweight power wheelchair I can load in and out of my car myself. It might be a power recliner with a lift function. It might be The Right Electronics (I can do a whole nother talk about this). It might be putting an adjustable bed in the place you spend the most social time. If you’re not leaving your house because it’s too hard, it’s time to look at things that will make it easier.
Always have one more tool in your toolkit, if you can, and try to avoid using that last tool except in emergencies. For some people that tool will be alcohol, or muscle relaxants. For me, it’s oxycodone. I have a bottle with a few pills that I keep locked away and when the pain is bad enough that I can’t sleep, I take just enough to allow me to sleep. Knowing it’s there helps me not reach for it too often. If you’re reaching for your last tool too often, you probably need to talk to your doctor about switching meds or looking at what’s damaged.
When you are on these medications, you need to take infections seriously. You will be in the doctor’s office more. You will need more antibiotics. I have floating prescriptions for as-needed fluconozole for yeast and famicyclovir for shingles/cold sores. We know which antibiotics I tolerate. They give me tamiflu at the drop of a hat, or at least, at the drop of “anyone in my circle tested positive for flu.” Your family needs to take these things seriously and they need to work hard to wash their hands, cover their coughs, get their flu shots, and avoid people with known flu. You’re not likely to just drop dead of an infection without warning, but seemingly trivial toenail infections can get severe quickly, and my doctor thanks me if I come in on the very first day of them. Treated masks are you friend on airplanes and in large public places. Gloves help in flu season. Wash your hands a lot and don’t rely on hand sanitizer.
One thing to be aware of is that things which actually “boost the immune system” may not be your friend. But they may be necessary if you get sick. For example, elderberry syrup seems to boost tumor necrosis factor. This makes it directly very helpful for influenza specifically. Anti-TNF drugs can make us get a lot sicker with the flu. If you’ve just had your 8 week infusion and get sick, you need to be aware that taking something like elderberry acts almost as an antidote for your fancy, expensive drug.
And this can be life saving with influenza. You will learn to prioritize. Not-dying of infection trumps treating RA trumps “being all natural.” So sometimes we use the tamiflu and elderberry syrup because dying of flu would suck, and just know that we may need steroids to cover the flare that’s going to come after.
If this all seems like a crazy balancing act? It is. It’s not easy. But eventually someone’s going to figure out how to turn our immune systems off, reformat the hard drive, reload a clean operating system and cover us with antivirus protection* until the new immune system kicks in, and this will be a whole different ballpark. Give it 10-15 years.
*By which I mean: there is a therapy being devised for MS to “turn off” the immune system, which would then be replaced by naive stem cells which would regrow into a new immune system. Providing human immunoglobulin for a time to help prevent illness while the new immune system gets established would be extremely helpful.
And hey, if they get good enough with CRISPR, those new naive stem cells might have been reprogrammed with the genetic risk factors for RA removed. It could happen.
I keep telling my doctor that this immune system is broken and I want a new one, but the only way to do that with current technology is by bone marrow transplant, and knowing me, I’d get graft vs. host disease because that’s just the kind of unlucky I am.
But theoretically this could not only fix my RA, but sjogren’s syndrome and the majority of my food allergies. With CRISPR, it could even fix my genetic coagulapathies. I’m not desperate enough for a bone marrow transplant. Yet.
Photo credit: Image by Myriam Zilles from Pixabay
On November 15, 2017, I launched the website and Patreon for A Lon Story, my original hard science fiction web series.
