Personal Experience with Ankylosing Spondylitis

May 4 is World Ankylosing Spondylitis (AS) Day. About one in hundred in a population suffers from AS. Males are more prone to AS than females. If not properly treated in time, it may severely impair one’s life. As an AS patient myself, I thought to share my own journey which might be helpful for other AS warriors (as my doctor Dr. Shashank Akrekar puts it). In process, let me burst some myths around AS and share some of my realizations.

Dr. Abhijit Majumder

Myth 1: Arthritis happens only to old people.

I was a 12 years old boy leading a regular, normal life. Just like any other kid, I was busy with my study, going to school, playing with friends and doing all kinds of naughtiness that is suitable for that age. There was no sign of illness other than some sporadic ankle or hip joint pain which we always ignored assuming to be a sprain that I had got during playing. With pain balms and a few days of rest, the pain used to subside only to come back again after a few weeks. However, the situation dramatically changed one day when after a day full of badminton with my cousins, the pain in hip joint became too severe. By night, I lost my ability to even get up and sit. The pain was excruciating and all pain-killers failed to give me any substantial relief for a reasonable duration of time. The situation worsened with every passing day. I got confined to my bed with my hot water bags and tons of medicines. My life came to a standstill and my parents were afraid that I may get bed sore. Finally, I was diagnosed with Juvenile Rheumatoid Arthritis (RA). It was a shock for everyone that someone at the age of 12 can get arthritis. Not believing the diagnosis, my parents took me to several specialists in Kolkata finally realizing that the arthritis can strike at any age. It took 10 long months of fight, before I could again stand on my own feet.

Realization 1: Your relatives are your real well-wishers, but they are not doctors. So, do not allow them to put your morale down with a dull picture about disease prognosis.

Myth 2: You can get cured

When I finally got to stand and walk, we all thought that I got cured. I stopped visiting my doctor and taking my medicines. Everything was fine for another seven years and I actually forgot that I ever had AS. However, like an old friend, dear AS came back and knocked at my door when I was doing my B. Tech. One fine morning, I found that my hip was slightly aching and by evening I was back to bed. This time along with my hip joint and back, it attacked my mandibular joint (connecting jaw with the skull) too. I could not open my mouth or chew. So, my mom, by then retired, had to paste the cooked rice in the grinder, mix it with dal, and then put that almost liquid food into my mouth that I could only open for about half-an-inch at max after lots of effort. This time we realized that my AS would never get cured. However, I also learnt that it can be managed well with regular medications and physical therapies. I spend again another six months in bed. During that period, I had to go to my college in Durgapur to appear for my exam so that I don’t loss a year. We travelled from Kolkata to Durgapur (about 180 km) in ambulance, stayed at my aunt’s place. Every morning, an ambulance used to come to take me to the exam hall on a stretcher. I gave my 3rd semester on a makeshift mattress put on the floor. I can’t thank enough my teachers from REC Durgapur, my friends, my aunt, uncle and cousins who stood by me at that challenging time. Without their help and moral support, it was not possible for me to appear for the exam and clear it. Though I came 2nd from the last in that particular semester, but it feels good that I could clear it.

So, in conclusion, AS is an autoimmune disorder meaning your own defense system is working against your body. So, it is in-built and can’t be completely cured. However, it can be very well managed with regular medications, consultation with your doctor, help from people around, and physiotherapy.

Realization 2: People are important.

Myth 3: Pain killers and steroid drugs are bad

During this 2nd attack, my knee got locked (or frozen) in an angular position. Even when the pain got reduced, I could not stretch my legs and thus could not walk. This was a terrible situation because I was not in that stabbing pain but could not even walk to the washroom. My Physiotherapist came to my rescue. With regular mild stretching and application of hot molten wax on my knee (known as paraffin bath) finally my knee opened, and I started learning walking again, that is for the third time in my life.

After this 2nd attack, I became a bit more aware of the disease and its prognosis. Also, I got to know about different treatment strategies. First of all, be aware, be educated but trust your doctor. The medicines which we think as pain killers are actually NSAID or non-steroidal Anti-inflammatory drugs. They help in controlling the inflammation and as a result reduce the pain. However, more importantly they prevent the possibility of permanent deformation and damage. So, if your doctor has prescribed you NSAIDs, s/he knows very well and don’t stop the medicine just because someone told you that these medicines are bad for your health. 2nd line of treatment is DMARDs or disease modifying anti-rheumatic drugs. They too play a critical role in remission of the disease and preventing future episodes of pain and flare. 3rd line of treatment is steroidal drugs. Your doctor knows well when to prescribe it. Neither force him to write it nor stop it without his/her permission. These are magic drugs. In most of the cases they reduce the pain (and chance of deformation of joints). Take these medicines exactly the way prescribed. Also, if you are on steroids, doctor may ask you to follow certain lifestyle management. Following those instructions are crucial. Also, bringing a trained physiotherapist into your disease management program is essential.

Realization 3: Making peace with a chronic condition is helpful for mental well-being.

Myth 4: AS attacks only your joints

After this 2nd episode of flare, my AS came back for two more times, once during my M. Tech and next during my PhD. However, as my doctor predicted, it’s duration and severity, both came down. It basically changed its form. From an infrequent but severely disturbing visitor, it became a much mellowed down but a consistent partner. I too learnt living with it. I could almost predict when it’s about to come. I could also prevent it from going full blown by either changing my daily routine for a few days or by taking prescribed NSAIDs.

However, little did I know that it can have many forms. When I was in Boston doing my post-doctoral research, one fine morning I suddenly found that my vision was blurred, and any bright light was causing pain. I went to the doctor and to my surprise she said that it was another manifestation of AS, called uveitis. Luckily with a few days of steroid drops, it came back to normal and I got back my normal vision.

It’s next manifestation was though not that easy to tackle. In 2014, suddenly I found that I was not able to pass urine. My bowel movement too got stopped. It felt as if I forgot how to perform those activities. I was new in Mumbai and got really scared. Thankfully my friends Deepak and Pramit stood by my side as two pillars. They took me to the hospital. For next five days, the doctors tried many things but with no help. MRI found some growth in my spine. That growth was pinching my nerves responsible for the bowel movements. The doctors suspected either bone TB or a malignant tumour. However, as it was difficult to get the biopsy done because of the critical location of that growth in spine, doctors started TB medicines. At the same time, they gave steroids which resumed my motion. After getting releases from the hospital, I went to the best TB specialist in Mumbai and arguably in India. He struck down the possibility of TB or malignancy and said, the inflammation was due to AS. However, as I started TB medicines, I had to complete a full nine months course.

Later, I learnt that AS can cause problems at many organs including your stomach and heart. One mistake that we do often is stopping the medicine during the time of remission. We get tired of so many pills. This is a mental state called medicine fatigue. I can completely understand the feeling. However, to defeat AS and to lead a healthy life, one should not stop the medications.

The Ten Commandments (from someone who has been dealing with it for last 30 years)

  1. Thou shall not panic. It’s just another disease like diabetes which needs continuous monitoring. No need to get upset.
  2. Thou shall visit a rheumatologist and not an orthopaedic surgeon. Rheumatologists are better aware of the newer medicines.
  3. Thou shall take your medicines regularly. Thou shall not stop taking medicines or visiting your doctor when the pain is in remission. If you don’t take care, it will certainly come back.
  4. Thou shall not slouch. Thou shall keep an upright posture. Thou shall lie down on your stomach every day for some time.
  5. Thou shall do exercises under proper supervision of a medically trained physiotherapist. An otherwise good yoga or gym trainer is not suitable for you as you need special attention.
  6. Thou shall take enough rest. Balancing between activities and rest is the key.
  7. Thou shall not do exercises when in pain. Your joints need rest that time.
  8. You may consider stopping starch or cutting down starch. Mind that, I am talking about starch and not carbs. I got benefitted from stopping rice, roti and potato.
  9. Your AS can manifest in body parts other than joints. You will be mindful and aware about that.
  10. Most important, Thou shall not trust in any commandments given on social media, even if it is coming from someone you trust. Professionals know the best, and you will not take any chance about a disease that has the potential to cripple you completely yet so easily controllable.

Stay happy, stay healthy.