Despite a family history of Ankylosing Spondylitis, it took 2 years for Amit Choudhari to get a diagnosis of Ankylosing Spondylitis (AS). Luckily despite experiencing pain and attacks, the treatment and medication prevented joint fusions. He talks of how AS affects his social, employment and lifestyle choices and how faith and family support help him cope with the condition.
Please tell us a bit about your condition
I have been suffering from Ankylosing Spondylitis (HLA B-27 Positive.) for the last 13 years. I was diagnosed in 2009. God is very kind that I don’t have any fusion or joint damage. But I still have pain in the back and peripheral joint 24/7 which increases in the night and disturbs my sleep. I have to deal with pain daily, which is sometimes mild and sometimes excruciating.
Did you have a relatively early diagnosis?
I was suffering from back pain since 2007 which used to increase with morning stiffness. But I would say I was very fortunate to get an early diagnosis since it has not affected any of my joints, which might have resulted in deformity or any such complication.
Must read: My father's journey of Ankylosing Spondylitis
In what way did an early diagnosis help you?
An early diagnosis helped me a lot to get right treatment and medication started right from the first day. With an early diagnosis, I managed to save my joints from deformity and it was also easier to control the condition and its accompanying issues like pain and distress.
What were the early symptoms of your condition?
- Lower back pain alternating in the right/ left buttocks.
- Morning stiffness which lasted for 45min.
- Difficulty in sneezing as it gives a jerk in the body and the pain increases.
- Not able to walk, particularly in nights to visit the restroom due to pain which eases in the daytime and increases at night.
- Long episodes of loose motions.
Please describe your experience of managing the condition?
For me managing AS is very simple as I had my father as an idol, who has managed to carry on with his life despite multiple joint fusions. This made me realize that we can live with AS as long as we learn to change our lifestyles accordingly. .
Initially though I was very negative towards life cursing God every time and asking why it had to be me., But then I realized nothing is going to change until and unless I change my perspective towards life. We need to understand AS is just a condition in life. It is not life itself and life is beyond all sufferings.
What medications are you on?
I have been on DMARD’S (Disease modifying anti-rheumatic drugs) initially for 1 year. And then as my condition did not improve, I moved to biologics, Enbrel Etanercept. I took this for 6 months (24 doses of 50mg each). But in 2011 when I had my next attack, Etanercept proved to be a failure. I shifted to another biologic Remicade Infliximab which I took continuously for two years and I got relief from it. I have continued the same till 2018 on as and when required basis. I took around 40 doses of Infliximab.
Currently I am managing my AS with oral medicines sulfasalazine 1000 mg, Indomethacin 75 mg SOS, Calcium supplements Vitamin D3, Folvite.
Were there any side-effects of the medicines?
- Initially when I was diagnosed, I was put on Prednisosone for more than 4 months. This medicine brought a certain fluffiness in my body and there was considerable increase in weight.
- I took Methorexate also which was a weekly dose, on the weekend. This made me feel uneasy and nauseous. Apparently this happens with most people who take this medicine.
- I didn’t have any major side effects of biologics (Infliximab, Etanercept,Tocilizumab). But sometimes I had loose motions after taking biologics and for that I used to get admitted in the hospital.
Were the medicines easily available? How did you procure them? How did you manage the financial burden of your treatment?
For this question I would say God was very kind to me that I got an early diagnosis, and even fortunate that my father was in the Railway service because of which we have had a medical facility. So, all the financial support for treatment was given by Railway hospital from 2009 to 2018 (Including oral medicine, biologics, pathology etc.) as I was dependent on my father.
If I calculate it was almost more than Rs 60 lakhs that the Railways spent on my treatment for as long as 9 years. As I am no more dependent on my father, now it is very difficult for me if I need biological treatment which costs around 1 lakh for a single dose of Infliximab. So, I am managing with oral medicines.
What were the other challenges you faced and what is your advice to patients who face similar challenges?
Ankylosing Spondylitis is known as a disease which turns you old. .
Many people don’t understand AS and they accuse us of coming up with excuses.
I have missed out on my graduation years. We, the AS warriors, also cannot move to another city with a job because we always need the support of a family member, so we need to be close to our families.This means missed opportunities. My advice to all the AS Warriors is to adjust your lifestyle according to your medical conditions to make your lives easier to live.
What kind of specialists do you consult and how often?
I consult Rheumatologists and general medicine practitioners every 3-4 months to keep a track of my condition.
Have you had to make some changes to your lifestyle because of your condition?
Initially for some time I had to walk with the help of a walker and stick. I could not sit with folded legs.
I avoid long travels. I avoid work which requires physical strength and bent postures. As a result of all these movement restrictions, I missed out on good job opportunities in other cities.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
No I have not tried any alternative medicine because I saw they did not really work for my father.
Has it been difficult emotionally to cope with your condition?
Yes initially it was very difficult to accept that I have been afflicted with a lifelong condition. But as I started emerging stronger than before from AS attacks over the years, it made me believe that we can lead a good life with this disease also and the biggest example of courage in front of me is my father.
I personally try not to over think about my condition, but I do get disturbed when I am in intense pain. It makes me think that now I am able to manage my personal and professional life because I am single. But how would I handle my attacks after I get married? And what worries me even more is that if my children inherit AS from me, like I have from my father. These are the times when I feel I should not get married at all. But doctors have been positive and have tried to make me understand that we should always hope for the best and as medical science advances definitely there will be solution to such autoimmune diseases.
How has your family supported you?
My family has supported me a lot to come out from such a bad phase and they are still supporting me whenever I am in pain. My mother and cousins used to stay in the hospital in Mumbai with me for months while my sister and father had to manage our home in Nagpur. Every other month we used to visit Mumbai Railway hospital for medication. So, it is totally because of family support and courage that I am where I am today. My parents would even give me back massages when I am in pain.
What was the hardest part of the treatment? And what kept you going?
The hardest part of the treatment is it took a while for the attacks to slow down which made me to miss my graduation years. And for treatment I had to travel to Mumbai on a regular basis, which was also tough. But, at least for me, the medicines worked. It took time, but it worked. I have seen biologics not working for many patients.
Is there any personal anecdote that you would like to share with us?
It is my belief if God has given me and my father such a condition to live with, he has certainly given us the fortitude to tackle it and also emerge victorious. And we should never feel we are the only ones suffering in this world. There are many who are in a much worse condition. I would like to tell other AS warriors that don’t feel you are alone, the Divine power with you will help you. Try to surround yourselves with positive people who have a positive approach towards life despite having to deal with AS. Always think that nothing is permanent in this world, not even our pain and suffering.
