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Submitted by PatientsEngage on 24 June 2017

How does one smile and be cheerful when one wakes up with severely stiff joints and incredible pain? In the conclusion of this two-part series, Lakshmi Menon, 63, talks about the various health issues that arise as Rheumatoid Arthritis (RA) progresses and offers coping mechanisms to maintain best health.

I began to monitor my health condition such as increased pain, swelling or other changes so I could report these developments to my rheumatologist. In the past 8 years, other than pain, morning stiffness and inflammation, I experienced other conditions which are associated with Rheumatoid Arthritis (RA), such as:

Dryness: I experienced severe dry eyes which affected my reading and caused intense burning sensation in my eyes and uncomfortable feeling like having foreign particle in my eyes such as dust and grit. I consulted my ophthalmologist who prescribed lubricating eye drops. Later on I also discovered that my mouth was extremely dry and I needed to drink adequate water frequently.

Nodules: I also found that I had nodules under my skin in my arms and legs which is associated with RA. They have not yet caused any problem.

Infections: I suffered frequent infections like flu, cough, headaches and respiratory problems which I had earlier not connected to RA.

Costochondritis is an inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone, or sternum. Several times I experienced chest pain and inflammation of my sternum. Doctors would advise me to undergo echocardiography as costochondritis can mimic a heart attack or other cardiac problems. But recognizing my condition to be localized musculoskeletal chest pain, I would ignore their concern. Later I found the cause to be Costochondritis which is a relatively harmless condition usually goes away without treatment. Though Costochondritis isn't directly related to RA, it is believed that inflammation from RA can be a reason for damage to the rib cartilage.

Lung connection: RA affects the lungs. I suffered fever and severe headache without chest congestion or cough for a few days; later my doctor discovered crackles in my chest. Several tests (x’ray, CT scan of chest) were conducted and I was diagnosed with pneumonia. Methotrexate was withdrawn and restarted after 8 weeks. When I recovered I had to take an anti pneumonia vaccine which gives protection for 5 years. I also continued to have respiratory infections and cold and fever for a period of time despite taking anti-flu vaccine.

White blood cells: Last year my RA raged on over a period of 10 months with very severe inflammation, stiffness and pain especially in my fingers, wrists, shoulders, knee joints, feet and ankles. Complete blood count (CBC) done in Feb this year showed critically low white blood cell (CBC) count at 1,200, low neutrophils, low platelets and haemoglobin. I had to undergo a bone marrow test which ruled out malignancy.

Initially methotrexate was thought to be the culprit but after stopping it for over 2 months, my WBC count continued to be critically low. Hence it is now believed that RA is the cause as it is immune mediated.

As I was off methotrexate, my rheumatologist wanted me to take an antimalarial medication, hydroxychloroquine, but my ophthalmologist was against this drug as I already had an eye problem, further the drug is believed to cause retinal toxicity in some cases.

After 3 months of battling low WBC count, when my haematologist gave the go ahead to methotrexate in low dose, my rheumatologist put me on low dose prednisolone (Wysolene 5mg) and methotrexate 5mg for 2 months. He warned me that if this combination did not work I would have no option but to be on Biologic drugs. These drugs are designed to affect parts of the immune system that play a role in the disease process of rheumatoid arthritis. This drug is given intravenously in a hospital setting and is awfully expensive at about Rs 10,000 per injection. I cannot imagine being on this medication for probably the rest of life.

Acceptance & Coping

Initially coping with RA was not very difficult. Methotrexate takes about six weeks to work so the doctor usually prescribes a steroid prednisole (Wysolene) in low dosage to help patients withstand RA effects. The steroid is usually withdrawn after six weeks as methotrexate steps in. Except for the periodic blood tests and visits to the rheumatologist, I was at comparative ease and managed to continue my normal life and work which required extensive travel abroad.

When my rheumatologist was satisfied with my response to his treatment, the number of blood tests were reduced to two a year and just yearly visits to the rheumatologist.

RA tends to flare occasionally and then I would experience severe inflammation, stiffness and pain. But I was able to tolerate it as I knew it would be only for a week or so after which RA would go into remission. Swelling and stiffness became worse during monsoons and in cold weather.

Every morning at 6am I have an ayurvedic oil massage of my arms, legs and shoulders. It is only after a hot bath about 8am that my joints would ease a bit. I would somehow drag myself to the yoga centre and try to keep up with the senior citizens’ class. On many days I would skip the class as I could barely walk. Then miraculously around 12 noon my fingers which were curled in a balled fist would open up. But there are times when pain persisted all through the day and night. Then again, there are good days and bad days and one is not able able to plan one’s travel or meetings. This is when painkillers help.

At one time my RA flared up for over 10 months. I survived on the hope that it would go into remission the following day. Surely it can’t last this long?? When RA flares, it is very difficult to continue normal life and it would be easy to sink into a black hole of depression. Chronic pain alters one’s personality. Hence family and friends’ understanding and support help a great deal in coping with RA.

It is important to remain active; staying positive is the prime requisite to overcome this disease.

Doctors advise patients to remain positive, but this is easier said than done. How does one smile and be cheerful when one wakes up with severely stiff joints and incredible pain? There were many days when I was unable to open the water tap or squeeze a tube of toothpaste, I had difficulty in dressing myself, or in doing simple tasks such as opening jars, switching on the gas stove, lifting a saucepan with water and other tasks we generally take for granted. There were days when I would have to lie in bed, unable to move and wishing never to have to get up again. When painkillers kicked in, I would be able to overcome such negative feelings.

Talking about what I went through also helped. It helped me get it all out of my system and it helped others understand what I was going through. I would go to RA websites and read about what others with RA were experiencing and it would give me solace that I am not alone (hardly any consolation). More importantly I learned about how they were suffering and surviving. Support groups help in discussing our specific problems, exchanging notes on symptoms, medications and their side effects, and providing solidarity and encouragement when future appears dismal. I also found inspiration from people with far worse troubles (poor health and financial condition), how they battled RA and how they coped.

I needed to be alert to various changes I was experiencing. Initially I did not relate these to RA. Then I began to research RA on the internet and made many discoveries about RA.

Most doctors do not tell you about what to expect; perhaps they don’t want to alarm their patients or maybe they are honestly unaware. While it takes about 3 months to get an appointment with the rheumatologist one is out of the clinic within less than 10 minutes so one can hardly expect any kind of patient education to happen in a doctor’s clinic.

Hence it is up to us to be aware and alert, to learn more and understand our illness so we can cope better. We need to be active as long as we can. With age the disease will progress and things will only get worse; so we need to be more prepared to deal with newer challenges. We need to arrange for better social and financial support to overcome this debilitating disease.

Read the first part here

 

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