Rashne Dubash, 76 year old from Mumbai shares her journey of living with Rheumatoid Arthritis for over two decades. She talks about her symptoms, how she manages her health and the lessons learnt.
Rashne Dubash is an energetic vibrant person who does not want any disease to curb her lifestyle. She continues to be active, refuses to retire and loves her life. She used to work as an administrator for a school and now works for a design firm.
Please tell us a bit about your condition?
I have Seronegative Rheumatoid Arthritis (RA) which is an autoimmune condition.
I was diagnosed in 2001.
What were the early symptoms? What made you go to a doctor?
Sometime in 2000, I found that the skin on my hands had become dry like steel wool. If my hands rubbed against my pants, they would catch. I thought it was a skin issue and generally had a word with a few doctor friends but never set up any clinic visits. I followed some skin care regimes and it seemed to work. A few months later, I had a lot of dryness in my mouth and both eyes. I found myself drinking tons of water to counteract the dehydration. Then my toe became red, followed by a stiff achy jaw and a swollen wrist.When the wrist was swollen, I was at my son’s home in UK. One evening he had a doctor friend over for dinner who saw my wrist and immediately told me to see a Rheumatologist. Her own mother had RA and she suspected the same for me. So, when I returned to India after my trip, I set up an appointment with a Rheumatologist.
What tests were done? How did the diagnosis come about?
A full body check was done along with blood tests. I was finally diagnosed with seronegative RA, which is a type of RA where the RA specific antibodies do not show up in the blood tests. It was now 2001. I was immediately started on treatment.
What was the treatment for RA?
At first, I was on Hydrochloroquine or HCQ which is a disease-modifying anti-rheumatic drug (DMARD). In 2002, I was started on Methotrexate along with the HCQ. In 2016, I was stopped from taking HCQS as it had affected my eyes. Methotrexate was continued and I was doing well on it.
However, in 2021, during the second lock down of the pandemic, I seemed to in some pain and suffered a lot for a long time. My doctor and children tried hard to convince me to go onto biologics. Finally, I gave in to them and so, in March 2022, when the 3rd wave of Covid was on I was put on biologics once a week and subsequently once in 10 days and the oral Methotrexate was stopped and injections of the same were started once a week. Initially, I resisted going on biologics because one of its side-effects is risk of getting Tuberculosis. I was aware that biologics once started cannot be stopped, only reduced over time. However, after the first shot itself, I could feel that something was happening in my knees. My left knee is more affected than my right. My body has been responding very well so far, so I am happy.
Were there any complications from the primary condition?
- In 2006, I started getting uncontrollable spasms of cough with no phlegm. It subsided on its own. In 2014, I felt shortness of breath and decided to see a doctor. I was put on Acebrophylline and I started feeling much better. But the cough returned, this time I consulted the top Pulmonologist in the city. He told me I had Bronchiectasis, which is a chronic lung condition. Once my lung CT even looked suspicious for ILD but cleared up post an infection.
- I’m not sure if this is related but I do have osteoporosis and had a bad fall few years back. My rotator cuff was severely damaged and I had surgery with artificial implants.
- Usually, the heart is affected by RA, but my heart seems to have evaded its impact.
Did you try complementary medicine or therapies, like homeopathy or ayurveda? If yes, did it help?
I have tried cinnamon and honey once for 4-5 months.
No, it did not help at all.
What medications are you currently on?
Since March 2022, I am on biologics (once in 10 days) and Methotrexate injections (once a week). With time, I hope to be on biologics once in a fortnight. Additionally, I’m on a medication for cholesterol although my cholesterol levels are very good.
I take all vaccines on time viz the pneumococcal and the annual flu shots, as well as the Covid booster. I am still a “co-virgin” and haven’t got Covid yet. I continue to follow all preventive measures such as masking and avoiding crowded areas etc.
Were there any side-effects of the medicines? If yes, how do you manage them?
When I was on the HCQ, it had started fraying my optic nerve. This was found out on a routine eye test that I was told to do on a regular basis. The pill was moved to every alternate day but that did not help, so eventually it was stopped.
One other time, my son had researched and found a drug molecule leflunomide and with the consent of my Rheumatologist, I was started on it. However, I would wake up at 2am every night with terrible pain in my left leg, from my hip to the shin. It was agonizing pain and I would get out of bed and walk up and down till the pain eased. After 12 days, the drug was stopped.
What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc.) did you consult and how often?
I see my Rheumatologist as and when required. She is most accessible, and I message her when I need. I have my blood tests done about twice a year. I used to see an Ophthalmologist when I was on HCQ but haven’t since I stopped HCQ.
Do you have a family history of this condition? Is it an inherited disorder?
That is what one would think but I have no immediate relatives with RA. My grandparents died young and my father once had a swollen hand but was never diagnosed with RA.
What is your present condition?
I keep getting dry pneumonia or bronchitis at least once a year. When I get a RA flare-up, I take a painkiller but avoid taking NSAIDs. Earlier I used to get a flare-up once or twice a year, however since March I haven’t got any.
I am not on any diet but I am not a big eater either so have no weight issues. I exercise daily.
This includes:
- 45-60 minutes of walking.
- 45 minutes with my personal trainer 2-3 times a week. She does stretching, bending, weight lifting etc. Despite my rotator cuff surgery, I am able to lift 2.5kg weights with each arm.
- Basketball or Table tennis at the club once a week
How has your family supported you? Who has been your biggest support/companion through it all?
My children most definitely along with my sister have been by my side the entire time. I have a close friend who I regularly go to play various sports with at the club.
Did you inform your workplace? If yes, how did they handle it?
Yes, my workplace has always been aware. It has not interfered with my work yet. I continue to be employed and enjoy my time working. I am a very active person so don’t want to retire anytime soon.
What were some of the challenges you faced?
Challenges are mostly the mental ones. I feel sorry I cannot do more but that is more age-related. I go out and do as much as I can and create work for myself on free days. I don’t give in. The only time I feel miserable is when I am down with fever or a Gastrointestinal issue.
What is your advice to patients who face similar challenges?
My advice to other patients would be to keep active! This is most important and only thing that will save you from becoming bed-ridden by this condition. Even during a flare-up, I refuse to just lie down in bed, I want to be up and about.
