Ron Lev was only 16 when he noticed something was “off.” He was an active, young teenager when it occurred to him that he was experiencing pain even while walking. He didn’t think much about it because he was young.

However, the pain got worse and he couldn’t even walk without suffering from excruciating, debilitating pain. When Lev was in ninth grade, his leg had to be dragged when he walked.

Lev, 44, a father of two children, says that he was in terrible pain for two years. “It was simply growing pains,” said Lev. Everyone seemed to dismiss RA because it is not common in younger patients.

Lev was injured and had to go to the emergency room. This is when he realized what was causing his chronic pain.

He recalls that the doctor asked him if he had ever seen a rheumatologist. “At that time, the ER doctor saw that I had already suffered damage to my joints and that it was irreversible. He advised us to do everything we could to control it. We made an appointment immediately with a rheumatologist.

Lev’s journey with RA began young. However, he has shown that the condition and its symptoms can be managed with the right care.

Find the right care

Unfortunately, Lev’s first rheumatologist was not a good bedside manner. He blamed his mother for leaving her son’s condition untreated so long.

According to Lev, the rheumatologist suggested “starting with heavy guns” and started treatment with an immunosuppressive drug called Methotrexate.

But, side effects can include a weakening immune system, hair loss and depression. Lev was the first to experience all of these.

He explains that he became depressed as a result of not feeling in control of everything. He also explained that the medication was not working. He said, “When it didn’t work, I felt like my life was over.”

Lev finally sought out a new rheumatologist, and since then has been able get his RA under control. He was then diagnosed with lymphatic carcinoma in 2004 and placed on chemotherapy for nine month.

It turned out that the chemo that suppressed he immune system also helped his RA. He recalls, “I could do everything — swim, walk and hike.”

After he had recovered from his cancer, and the treatments ended, however, Lev’s RA symptoms started to return. According to the Arthritis Foundation, Lev began biologic therapy five years ago. This is a type of drug made up of genetically engineered proteins which target the areas of the immune system that are responsible for inflammation.

Mixing well

Lev is currently undergoing biologic treatment that involves regular infusions at his doctor’s office. He has also explored the possibility of using cannabinoids (CBDs), for pain relief with the support and advice of his care team.

To his delight, CBD was able to relieve his RA pain and even nearly eliminate it completely. He was also able to stop taking steroids for the past 23 years.

Lev recalls that it was a “wow” moment for him when he started to use [CBD] as an adjunct treatment. “I felt like my life was finally free from this horrible disease. “I’m proof that even with RA, you can still live a full and happy life.”

These are Lev’s top tips to living with RA.

Choose a doctor with whom you feel at ease.

Lev felt defeated by his first encounter with a rheumatologist and blamable for his condition’s worsening. He says that he needs to have an emotional connection with his doctor because dealing with RA can be exhausting. Your doctor should be there for you. My first doctor denied me any active activities because I was too dependent on my RA. It is important to find a doctor with a positive, can-do attitude.

Talk to an occupational therapist.

He suggests, “Seek out advice from your doctor about adaptive equipment that will help you do everyday tasks with less pain or more independence.” This is true for all children, but it is especially true when raising children in the early years. There are so many tasks that you have to do around your child. The list of tasks that can be performed around a child’s body is endless, including changing diapers, burping, bathing, and dressing.

You should create a flexible work schedule.

He notes that RA can come at you unexpectedly, and it can also be rife in morning stiffness. Flexible schedules can help you to manage your RA. He says that the “work from home” environment allows for flexibility. You can also use many online freelancer platforms to manage your own schedule.

Ask about an ergonomist.

He says that many companies have ergonomists who can help create a safe and healthy workplace. Take advantage of this. Don’t be afraid or embarrassed to inquire if this service isn’t offered. Employers will often be open to supporting their employees’ well being.

Ask for support from your family and friends.

He says, “It is virtually impossible to raise a family while also having active RA,” and that it will be difficult without the support of your spouse and your children. “Especially if you have just been diagnosed with RA, it is important to have a serious discussion with your spouse to clarify that you will always do your best… but sometimes you won’t be able.” He adds that “sometimes your spouse will have the responsibility of doing all the heavy lifting.” Literally.”

Keep positive.

He advises, “Don’t bring a negative attitude to your doctor.” Yes, it is terrible to have RA. There are ways you can help yourself, if you’re willing. Your treatment plan will be more effective if you are prepared with the research you have done and any information you share with your doctor.

Meet others who have RA.

A supportive community can make it easier to manage an autoimmune condition. Lev found that volunteering at the Arthritis Foundation helped not only other people with RA but also helped him. Lev says that there are many support groups for RA. “Finding the right support group for you can really help.”

In a January 2020 study, Clinical Rheumatology published a study that found that RA patients benefited greatly from joining a support group. He suggests that RA patients should consult with others who have successfully raised families. There are many Facebook groups and discussion forums that cater to people with RA. Most people will be willing to share their experiences on how to tackle the challenges you face. You are not the only one going through this, but many others have successfully gotten out of it. Take advantage of their knowledge.

Consider augmenting your medication.

Lev recommends speaking to your insurance company to obtain the best possible discount on many of the drugs for RA. He suggests that you also contact the pharmaceutical companies to find out how they can subsidize the medication. He says that many times, they work with patients in order to lower the cost for medications. This alone can relieve stress, and can also pay off in other ways.