The Reality of Rheumatoid Arthritis: Behind the Scenes of Golnesa “GG” Gharachedaghi’s RA Journey
Shahs of Sunset reality show star Golnesa “GG” Gharachedaghi sheds light on her experience with a misunderstood disease.
By Cathy Garrard
In This Series
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Medically Reviewed by Alexa Meara, MD
Everyday Health Exclusive, as told to Cathy Garrard
My symptoms started when I was around 27. I noticed that my hands went numb in my sleep, like when you sleep on them the wrong way. Then it started to happen before I drifted off, and I would bang them into walls to try to get some feeling back into them.
Swollen, Blue Hands and Other Symptoms
About one month later, when my hands started to swell and turn blue, I got a little scared. I went to a hand specialist and was told I had tendinitis. That diagnosis made sense to me, since I was a serious gymnast as a kid, and had even trained for the Olympics. I figured the problem was just wear and tear. I started getting corticosteroid injections and they made me feel better for a few months. But then I couldn’t raise my arms completely, and after that I couldn’t bend my knees.
Seeking Out a Diagnosis
I went to see specialists for each joint, and no one asked me if I’d been to a rheumatologist. It was my general practitioner — I’ve seen him since I was a teenager — who suggested it. When I told him I’d visited all these other doctors he was concerned and made the recommendation. The rheumatologist tested me, and at age 29 I found out I had rheumatoid arthritis (RA). At the time I was diagnosed, which was seven years ago, I had only 20 joints affected, but now it’s more than 30 joints.
A Quest for Effective RA Treatment
I’ve seen a bunch of different rheumatologists over the years, and I still haven’t found a treatment plan that completely works for me. I feel like I'm a test tube in a lab. When I was first diagnosed, I took an alternative approach because my mother is such a health freak and she’s against Western medicine. I tried Chinese medicine, herbalists, and nutritionists. But I was in such agonizing pain, I was afraid those treatments wouldn’t work fast enough.
Treatment Trial and Error
I convinced my mother that I needed to be treated by a rheumatologist, and he told me about one drug that was also used as a chemotherapy treatment. It was as if someone slapped me, and my mom started crying. They started me on weekly etanercept (Enbrel) injections — a biologic drug — and for about two and a half years I had about a 30 to 45 percent decrease in pain and inflammation, but then the treatment stopped working altogether.
Trying, Trying — and Trying — New Treatments
After that, I tried Actemra (tocilizumab), which didn't help at all. Then I tried weekly injections of methotrexate (Rheumatrex, Trexall), and I received Rituxan (rituximab) infusions every three months. That combination of drugs really worked, but it only lasted for a year and a half. The inflammation started spreading—and fast. I was told I’d developed costochondritis, which is inflammation of the rib cartilage, and they put me on heavy doses of prednisone for that. I stopped taking the prednisone after one month because of concerns about steroids long-term side effects, and now I’m trying Xeljanz (tofacitinib). I’m not sure how that’s working yet, because it hasn’t been in my system very long.
Medicinal Marijuana Can Help Relieve Pain
For the last six months, I have been using cannabis, and there are some non-psychoactive strains that have eased my pain significantly. I’ve even been able to sleep through the night. The improvement has been so remarkable that I’m working on creating my own medicinal cannabis product to help other people with autoimmune diseases.
Living With RA in the Public Eye
I’m glad I have an outlet to talk about rheumatoid arthritis. A lot of people who have it feel ashamed or embarrassed because RA has the word “arthritis” in it, and that word is also the reason so many people don’t understand what’s wrong with us. It’s a very individual disease, and it’s easy for people to judge. Even on my show [Bravo’sShahs of Sunset] some people thought there wasn’t anything wrong with me and that my disease was all in my head. The people closest to me know the truth, but it kind of sucks to be doubted.
Dealing With RA Fatigue
People hate it when they’re sick with a fever and stuck in bed and can’t get around. The exhaustion feels the same when you have RA — your cells are at war, and pain and limited immobility is every second of every day for us. I’m always tired, but some people just assume I’m lazy.
#FuckRA: Communicating via Social Media
In the autoimmune disease world, I have a lot of social media followers. I try to be a strong advocate and tell people not to let the disease get the best of them. And at the same time, other people say I’m lying about my health problems. What am I supposed to do? Should I enjoy my life and not let this disease rule me, or should I just stay in bed and act like a dying person so people get it? It’s almost impossible for me to get away from the judgment. But within the autoimmune community, we connect with one another and that really helps. Initially I received the followers because of people watching my story onShahs of Sunset. But what made my following grow was that I communicate with people. It's almost the only time on Instagram that I actually respond to comments. I began the hashtags #FuckRA and #BraveWarrior which I now see so many people using in this autoimmune world.
Daily Struggles and Successes with RA
My RA affects my life quite significantly. I can’t do things most people my age can do, like just sitting on a plane or in a car. My legs need to be elevated at all times, but I don’t allow it to stop me from doing what I want to do. After I visited the RA division at Children’s Hospital Los Angeles and saw babies who were suffering, I realized I really didn’t have a right to complain.
Eating to Avoid Flares
There are certain foods I try to stay away from to avoid flare-ups. For me, carbs, gluten, tomatoes, and eggplant aren’t great. But it would be difficult for me to go on a completely clean diet because I don’t cook and I eat out every day. Pilates and swimming are absolutely amazing. I work with a trainer who tells me how to strengthen certain muscles without putting too much pressure on my other joints.
How to Endure RA
It’s hard for me to give a simple message about how to get through this. It’s a hard, hard disease. It’s painful and it causes a lot of changes in your life. But everyone has his or her own set of problems, and we all have to figure out a strategy that works for us.
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