A question for the Rheumatoid Arthritis Community

Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?

Answers from the Community

I’ve been on different kinds of treatments. I started years ago, about 13 years ago, methotrexate, and then I went on to Enbrel, and then went on to Xeljanz, which is a pill form, and then Humira. I switched around due to coverage. My husband’s job changed, and I had different coverage, but some of the treatments weren’t working. The Enbrel didn’t work, and the Xeljanz wasn’t working as well as the Enbrel. But the current medication I’m on, Humira, is very helpful.

With my doctor, we decided that I will do a Remicade infusion. They were supposed to be every eight weeks, but I have to do them every four weeks because they’re so severe. The other thing that I do is I take steroids. And that part really sucks, because I have gained a lot of weight. But it does help with the inflammation. And then those two are decisions that I make with my doctor. But I also done my own research and I do like Epsom salt baths, and I have also tried CBD oil to help with the pain. And that one is just me doing my own research. And my doctor does know that I do that. And so that’s what I do to make myself feel better.

Well, I am currently on HUMIRA that I take once a week, and also a methotrexate shot once a week. Those are the main things that I’m doing most of all. Most days that works relatively well. We came upon this from my doctor. My doctor and I over the years have tweaked it, upped it a little bit, try different things. Mostly just the same medicines. I haven’t really done any other biologicals or anything because HUMIRA does seem to really work for me. And right now the HUMIRA and methotrexate work really well. If I have a flare up, I will take prednisone. That will knock it out. And I’m usually very lucky in that in the first, maybe two days, if it’s a really bad one, it might last two days and the prednisone tends to knock it out. But right now the HUMIRA and the methotrexate give me the best, I guess, the best quality of life compared to how I was before. Immensely better, even though there’s obviously many challenges still.

Over the years, I’ve had many different medical treatments, acupuncture, massage, water therapy, physical therapy. I’ve been on a lot of medications, some had side effects. And what we’re doing now is the only medicine left that my doctor could prescribe.

My doctor and I decided to treat the rheumatoid arthritis with Humira along with Arava, Sulfasalazine, and Celebrex, as needed. I am taking Humira every 10 days, which has significantly reduced the pain and swelling and has slowed the progression of the rheumatoid arthritis. And we decided on this treatment because the RA was progressing and my joints were being deformed and damaged. I tried to take methotrexate, but my stomach got too upset and my head hurt. So we decided to change to Arava when methotrexate wasn’t working for me. That is how I’m currently managing my condition.

Well, I came to it myself. I brought myself to the rheumatoid arthritis doctor and told him the pain I was going through. So we started off with going to the physical therapy three to four times a week. But it just got worse and worse so he put me on Hydroxychloroquine, which keeps it pretty much at bay. But I feel it’s starting to get worse again so he’s thinking Methotrexate, which I’m not too fond off because I’ve read about the side effects. So I’m continuing the Hydroxychloroquine until something else better comes along. I don’t see anything else I can take right now, but I do use the Voltaren gel. I rub that on my arms. So pretty much that’s where I’m at right now.

I was diagnosed with RA 11 years ago. I have been on multiple DMARDs and biologics to try to manage my symptoms. It seems that with most medications it lasts a year or so, and then just stops working. So again, I have been on multiple, multiple medications. The current one that I’m on as well as most of the other ones require a daily pill as well as a weekly injection. I do inject into my stomach weekly. There are side effects that I deal with. I do find that it is helping right now, but next month will be about a year that I’ve been on this current medication. So I’m hoping that it’s going to go beyond that but with previous history, I’m hoping that it doesn’t just stop working for me.

I take an Elbrel injection once a week and also take methotrexate once a week. That was my doctor’s suggestion and I have full faith in him so that’s what I do. I also get a massage about every two to three weeks. I feel like I do best if I get two a month, at least.

I have been on a lot of different drugs to try to treat my rheumatoid arthritis. I started out on just methotrexate; that wasn’t enough. I switched over to Enbrel. I failed that; it wasn’t doing enough. I switched over to Actemra; that didn’t work. Then I went to Remicade, which is an fusion; that didn’t work. And then right now I am currently trying Humira. So I give myself a shot every two weeks. And my doctor and I talked a lot about our different options and what is safe, what my options are left to try. And so we had a lot of discussions on how I felt on the other drugs and what we think Humira can do for me. And then that’s how we decided to try Humira. I’ve been on it for a little over a year now. And overall, it’s been definitely managing my pain. Before that, I was definitely in a flare for a few years. And then I do take prednisone when needed, but luckily I’d say for the last six months or so, I haven’t needed any prednisone, which is great.

Over the years, I’ve been on many, many treatments, but I do trust my doctor and she’s very proactive. So I guess I decide on my treatment based on her knowledge since she’s the one that knows the most and I manage it by doing what she tells me to do.

I currently manage my RA with a combination of Celebrex and hydroxychloroquine. I’ve taken Celebrex for approximately the last 10 years. It has been one drug that’s worked very well for me. I’ve taken a lot of different medications in the past, including biologics, such as Enbrel, Orencia, Humira. I’ve taken methotrexate. I’ve taken sulfasalazine. I’ve taken a bunch of different things. I was diagnosed when I was a kid, so I’ve been on all of the medications they had at that point in time for pediatrics and tried and failed virtually all of them. I also follow a gluten-free diet in addition to Celebrex and hydroxychloroquine for treating my RA. I found that taking gluten out of my diet, and I’ve been gluten-free for about seven years at this point. It helps to minimize my flareups and reduce inflammation. My mom supported me a lot growing up with my RA. I had a lot of doctors who didn’t believe that I had RA or believed that it was overblown or psychosomatic, and it was really frustrating because I was in a lot of pain. I was wheelchair-bound, and I had people who were supposed to be helping me, telling me that, “Oh, it’s made up. It’s for attention. It’s in your head.” So, I was really lucky that my mom believed me and was there for me to be my supporter because it was very tough to have people who were supposed to be helping you telling you that you’re wrong and doubting you. So, finding a homeopathic doctor to help me to get started on my gluten-free diet was one of the biggest helps as well as being on medications for my RA.

I take a oral medication, methotrexate. I take ibuprofen to help with the inflammation. I have a topical lidocaine cream, Biofreeze to put directly on the area, the joints and the swollen areas. I use ice packs when it gets bad. I stay off my feet when my knees are hurting so bad.

I manage this condition by going to the doctor regularly, taking my medication, which is Enbrel. And I also take oxycodone, which is a pain killer. I just kind of went with my doctor’s advice. We tried methotrexate and that didn’t work. So now, we’re on the Enbrel, and we’ll see how that goes.

My rare disease only has one authorized treatment, and that is insufficient. So over the last six years, I have tried various experimental drugs, if you will. They’re drugs that are approved for other conditions, but the FDA has not approved for my disease, sarcoidosis, so we have been trying to work our way through that. Most of the treatments are pretty harsh, like chemo, or biologics, and the side effects or after-effects are significant. So we go through each one of these with our healthcare team, and we come to a decision together. I’m fortunate that I have good health care, and I am open and honest with them about things that are working and things that are not working, so it’s kind of a team approach. And when I say we, my primary caregiver is my wife of 30 plus years, so she is involved in every decision that I make regarding health care and anything else.

Yes, I am currently on Enbrel. My current doctor prescribed it after I didn’t feel like Humira had worked for me very well. I manage this disease in a number of ways. I wear compression gloves. I do hot wax. I take my Enbrel weekly through injection, and that’s usually how I manage it. I try to get as much rest as possible.

I’m currently taking methotrexate and finally am on my second NSAID pain med because the first one didn’t work. It’s been really frustrating dealing with the doctor because I have to beg for better pain treatments and also ask for more physical therapy every six weeks because physical and occupational therapy do help, but it seems hard to get them in the first place.