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Submitted by PatientsEngage on 19 June 2017

Lakshmi Menon, 63, talks about how she was diagnosed with Rheumatoid Arthritis (RA) and her continuous struggle to manage its pain and debilitating symptoms. This is the first of a two-part series.

I first got to know of Rheumatoid Arthritis (RA) when my twin sister was afflicted with this debilitating disease when she was in her early 30s. She had a very virulent form of RA which caused her severe pain and, in no time caused deformation of her hands and feet and reduced mobility. It was her sheer will power, courage, family support, and treatment that helped her recover somewhat. Finally she managed to pick the threads of her life again by resuming her career as a lawyer.

Thus, I was aware of this disease and was constantly on the watch for any symptoms. The orthopedic surgeons I spoke to belied my fears that I too would be susceptible to RA. I knew RA was genetic, though nobody in the family seemed to have it, not in the last two generations.

I researched Rheumatoid arthritis (RA) and found that RA causes inflammation of the joints and surrounding tissues. It can also affect other organs such as kidneys, lungs, blood, heart and eyes.

It can occur at any age, but is more common in middle age. Women get RA more often than men. The cause of RA is unknown. It is an autoimmune disease, which means the body's immune system mistakenly attacks healthy tissue. RA is incurable and patients need to be on life time drugs to control the disease.

Pain as the Primary Symptom

My first symptoms appeared with pain in the back of my knees in 2002 while I was in Arusha, Tanzania for an international conference. It was cold and the meeting was hectic; I was constantly on my feet as I was on the organizing committee. The pain was very severe which made it very difficult for me carry out my duties well. Towards the end of the conference, I also contracted flu causing me to me return home without participating in post conference activities.

What I had thought was flu was in fact RA flaring up accompanied by fever. The orthopaedic surgeon I consulted said I had osteoarthritis. I was mainly on painkillers and anti-inflammatories which were quite hazardous. I underwent ayurvedic treatment over 3 years with only a little relief. The severity of pain is indescribable.

Painkillers helped in the beginning and then I had to increase the dosage and frequency with hardly any relief. Even at night when at rest, the pain raged on. It was agony to go to the bathroom at night. I could hardly bear to stand on my feet; I would spend agonizing moments sitting on the bed and trying to stand and take a step towards the bathroom. By then the urge to urinate became unbearable and accidents were bound to happen. Many years later when I shared this with people who had RA they confirmed they experienced the same helpless state. People are generally shy about talking about this; they don’t want to be reminded of the pain and infirmity.

The Diagnosis

In 2007 and 2008, I did a few tests such as Anti CCP antibody, C-reactive protein (CRP), RA Factor, Erythrocyte sedimentation rate (ESR), Complete Blood Count (CBC) all of which tested positive for RA, but as I did not have clinical symptoms such as stiffness, inflammation and pain in small joints, I was still not diagnosed with RA.

Finally, I realised that if I wanted to get my life back I needed to do something drastic. In 2008, I underwent total knee joint replacement surgery in both knees, each within a span of 5 days. Having doubts about RA I asked my surgeon to conduct a biopsy. Both tests were inconclusive. So I was still not sure. However after the surgery I got respite from pain and was able to get back to my feet.

Then after a few months I would wake up with stiffness and pain in my fingers and wrists. In 2009, after 7 years since the first symptom appeared, I was finally diagnosed with Rheumatoid Arthritis.

Treatment

I was treated with methotrexate which has serious side effects. I needed to do blood tests every three months to ensure this medication was not causing harmful effects on my blood, kidney or liver. I had to make six-monthly visits to my rheumatologist. Later on my blood tests were done six monthly and my visits to my rheumatologist reduced to yearly which was good considering it took 3 months to get an appointment with this renowned doctor.

Rheumatoid arthritis is treated with disease-modifying anti-rheumatic drugs (DMARDs) that slow the progression of joint damage from rheumatoid arthritis. Methotrexate, which is a DMARD, is usually given after other medications have been tried without success.

Research revealed that in low doses, methotrexate (Folitrax, Oncotrax) is a generally safe and well tolerated drug. Because of its effectiveness, low-dose methotrexate is now first-line therapy for the treatment of rheumatoid arthritis. However it has side effects such as hair loss, nausea, headaches, skin pigmentation and stomach upset; it can be toxic to the liver, kidneys, or bone marrow, and can cause birth defects. But these “minor” side effects are considered worth the risks because of the benefits of methotrexate in controlling this debilitating disease. Methotrexate is given in weekly low dose along with folic acid (Folvite) to reduce some of the side effects.

Non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin or paracetamol are also prescribed for pain relief with proper monitoring. However, I found these painkillers very ineffective; in sheer desperation, I chose to take pain killers and anti-inflammatory drugs like Voveron (diclofenac) or Sumo (nimesulide and paracetamol) despite being aware of their ill effects. I was careful to take these drugs only when pain was extremely severe and I needed to travel to work.

As methotrexate takes about 6 weeks to work, low dose corticosteroids (prednisolone -Wysolene) are also given for RA because they work very well to reduce joint inflammation. However, because of their long-term side effects, corticosteroids are given only for a short time. But steroids also cause blood sugar levels to go up and hence I needed to monitor our blood sugar till steroid drug is withdrawn.

Alternative therapies

When my RA raged on over a period of 10 months, my complete blood count (CBC) test early this year showed that my white blood cell (WBC) count was at a critically low level at 1,200; it remained at this level for 3 months. I was given filgrastim injections which would raise the WBC count only for duration of 4 to 5 days. I refused further treatment as I thought it pointless. I was sick of this repeated injection which had to be given on my stomach and tired of doing blood tests to check the WBC count. As I did not have any infections or other symptoms of low WBC, I decided to do nothing further but simply wait and see. I was warned against visiting crowded places as I was susceptible to infections. I laid low for a while and then thought “you don’t have to go to crowded places in Mumbai to get any infection, all you need to do to do for this is to breathe the air anywhere in Mumbai” so I moved about here and there a few times.

When my dentist advised a tooth extraction, I told him about my low WBC count condition. He did a temporary filling and told me to return when my WBC was in normal range. So I was stuck with this problem and no immediate solution.

Then I found an ayurveda detoxification treatment close to my place. The Ayurveda doctor did pulse diagnosis and prescribed a 3 week therapy package which included oil and herbal massages, steam bath, herbal basti or enema, a very strict diet and ayurvedic medicines. This therapy is aimed to remove toxins from my veins, nerves, joints, and accumulate them in the digestive system. The third phase of the therapy involved a day of complete detoxification to expel all the toxins from the digestive system.

The whole therapy was closely monitored by the doctor. At first I hesitated to undergo the therapy and even baulked at the exorbitant costs. Nevertheless I underwent the therapy which required dedication and strong commitment as I had to attend every single day of therapy and follow the diet strictly and take the medicines properly. Throughout this course I continued my allopathic medication. A week after the therapy, I did a blood test which showed a remarkable improvement in my WBC, haemoglobin and neutrophils. Though my WBC is still low, my haematologist was very pleased and encouraged me to continue this treatment. In addition my pain and stiffness has reduced and I am now able to stop painkillers.

I have undergone various alternative treatments since 1990s which included, nature therapy, Sujok accupressure, Homoeopathy and Ayurveda.

I would go for 2 to 3 weeks of nature cure therapy annually for detoxification and rejuvenation purposes. Sujok acupressure gave me lot of relief from joint pain for a while; it helped me stop deadly painkillers. Recently I tried homoeopathy for over 5 months but it failed to offer any relief.

Exercise is a major contributor to wellness. I ensure that I walk daily at least for half an hour. Swimming is another good exercise especially for those with joint pain as this exercise is not weight bearing; in addition swimming also helps in reducing stress. Daily swimming for a long period of time helped to increase my stamina and I was pleasantly surprised to know that I could swim about half a kilometer in 30 minutes without stopping. Later I had to stop swimming on account of some inconveniences.

Regular yoga plays an important part in coping with RA and general wellness. I go to a good yoga centre and I am able to do some yoga asanas sitting on a chair, as I am unable to sit cross-legged on the floor.

Exercise helps to keep the body active and helps the mind stay positive. Community yoga is good as one is forced to exercise in a group. This group activity also allows social interaction which helps in dispelling depression and coping with RA.

Coping with RA is a big challenge that needs multi-pronged approach first with acceptance and then with allopathic medications; alternative therapies and lifestyle habits such as exercise, yoga, positive thinking play a major role in controlling RA and keeping depression at bay.

Read the second part here.

 

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