Maxwell Gomes, 34 is living with a debilitating condition called Ankylosing Spondylitis in Kolkata which is so painful that it can even paralyse a person. Delayed diagnosis just makes it worse. Maxwell talks about how he manages AS as well as a host of other related issues.
How would you like to introduce yourself?
I am Maxwell Gomes, 34yrs from Kolkata, suffering from Ankylosing Spondylitis – HLA B27 positive. I’m suffering since 2013, but I was only diagnosed as late as in August 2015. I work as a daily labourer in a factory for packing and distributing sweet candies, rock sugar, puffed rice and chowmein to shops.
What were the early symptoms of your condition?
It started with morning stiffness and pain in shoulder and neck, numbness in the hip and legs and right lower buttock pain. My right-hand wrist started paining which reached the finger tips, and when writing or mixing rice while eating, the right hand would freeze.
Please tell us a bit about your condition?
When intense pain started in 2013, I went to the doctor and since he had no clue about my discomfort, he started me on some medicines, like pain killers, muscle relaxants, uric acid medicines, etc.. When nothing improved for me, I visited him again after some 20 days. The doctor said it will take time, asked me to start exercising, put me on to new pain killers and nerve medicines and told me to come back after a month.
Due to pain killers and nerve medicines the pain reduced, but I felt drowsy the whole day. But when after a week the pain started again, I went to another doctor. He also gave me some pain killers, nerve medicines and muscle relaxing medicines, and asked me to do some routine blood tests. My uric acid result came at a high 7.8. So I was told to go for diet restrictions and continue with the medicines as it was supposed to take time to cure. After a few days of medication, the pain started again. I went for a checkup, and he gave me pain killer injections every other day for about 10days. These injections helped reduce the pain and I started feeling better.
But the pain kept returning, after the effects of the injections wore off. The doctor changed the medicines yet again and told me this will take time. I kept changing doctors without improvement till in July 2015 I started limping and was half bent. An Orthopedic Surgeon I consulted around that time diagnosed my problem by just looking at me, without even consulting my reports. He gave me some medicines and pain killers and asked me to go for an MRI immediately and also some blood tests before starting the medicines. He prescribed some pain killers for temporary relief. The reports confirmed the doctor’s diagnosis of Ankylosing Spondilitis HLA B27 positive. He explained the disease to me and prescribed medicines for me for 9 months which he asked me not to miss even for a single day. These medicines were a mixed bag: pain killers, liver medicines, antacids, steroid 10mg, Folitrax 7.5, Folic 10mg. I was also advised to do physiotherapy and told that if in 9 months it didn’t improve, then I would have to shift to biologics.
The medicines seemed to work, and I had less pain and stiffness and life was almost normal. Little did I know that these medicines would have far reaching consequences. After about 8.5months of medication, other problems like acidity, diarrhea 8-10 times daily and vomiting started as well as unstable and high BP. More doctors didn’t help till I stopped my medicines altogether and consulted a rheumatologist.
The rheumatologist made me undergo tests like the MRI, USG, blood test and liver Biopsy. He told me to stop previous medications completely and he prescribed different medicines and started with adalimumab 40mg every 15days, including calcium, D3, some liver medicines, and told me to have pain killers as SOS only. Liver biopsy revealed Mild Autoimmune Hepatitis and the TB Gold Test also came positive (but as false positive) for which I continued with 9 months of TB medicines. Since 2016 – till 2018, I was on adalimumab and every 3 months I went for a checkup with routine blood tests. My condition improved a lot, without consuming any pain killers, except for emergencies.
But the pain started coming back in mid 2018, then adalimumab dose was changed to every 10days, then again every week and then every 3days. I had taken as many as 30 subcutaneous injections, as it was not working, and I was getting pain attacks which is when I realized I had turned immune to adalimumab. The right side of my body turned paralytic and I had to be admitted to the hospital. The doctor started me on infliximab 500mg through fusion, and then in December 2019 infliximab dose changed to 400mg. I am still taking infliximab and my last dose was of infliximab 500mg was on 26th February 2022. On January 2022 I even got Chronic Uveitis attack in the left eye as infliximab was not available in SSKM Hospital, nor even in the other government hospitals. I was thereafter lucky to get in touch with the distributor of infliximab directly. But I also had to undergo an eye operation.
In what way did a late diagnosis affect you?
Lack of awareness caused a late diagnosis for me which gave rise to other health issues. It could have been worse, but by God’s grace my bones did not get fused. Swimming could have helped me a lot, had I known about it earlier.
Please describe your experience of managing the condition?
Managing my present condition is very difficult as both my kidneys have stones and I have to manage the pain and discomfort with pain killer injections or even getting admitted to hospitals in emergency situations. I am a daily labourer who has to carry sacks. I used to cycle for approx. 55-60kms carrying items for shops, but now I can only manage about 39-41 kms due to my knee pain and right hand wrist issue.
What medications are you on?
My last dose of infliximab 500mg was on 26th February 2022, with Sazo 1000mg twice daily, Antacid daily once, Evion 400 daily once, Folic 10mg daily once, Multi Vitamin daily once, Amlodipine 10mg daily once, Atorvastatin 20 mg daily once, Telmisarten 40mg daily once, Etova ER600 SOS, Himalaya Platenza daily thrice, Naturopathy D3 and Calcium & Immunity Booster daily.
Were there any side-effects of the medicines?
Acidity problem, diarrhea type of experience about 2-4 times daily even now, unstable and high BP, liver and digestion problem, vision issue, headache, kidney stones (which requires another surgery) as well as increase in weight.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
Ankylosing Spondylitis is a condition that tears you up from inside. So preserving your mental health is vital for AS patients. You also invariably need the support of your partner and your family members without whom you cannot handle this condition. It will also drain you of your finances, so having a job and being able to maintain it is important. You also need to be at a location which gives you access to doctors and hospitals. Indian medical insurance does not support Ankylosing Spondylitis for the Biologics, which is why preserving your finances is very important. It is also important to be part of a group, the way I am a member of an Ankylosing Spondilitis Welfare Society whatsapp group. This group helped me immensely in terms of medicines and injections as well as financial help. It is also important to be connected with people who have similar conditions for moral support and to maintain your positive spirit.
Have you learnt anything in managing your condition that you wish you knew before?
I did not have access to enough information on autoimmune diseases as there is very little awareness about it, as there is about Cancer. Also, I wish I knew the importance of swimming, walking, exercise, cycling andmeditations earlier.I think these would have helpe me.
What kind of specialists do you consult and how often?
I consult a rheumatologist, every 2-3months with routine blood tests, and a naturopathy doctor to stay fit and fight my AS condition.
Have you had to make some changes to your lifestyle because of your condition?
I can rarely sit by folding my legs, which soon start turning numb. Long rides on cycle causes numbness in the hip and pain, and sometimes I fall down because my knee bones move from the correct positions. I tried to avoid physical labour in my job, but that is not possible. Because of my physical issues, companies don’t want to keep me, which is why I am not able to get good jobs.
What are the least understood aspects of AS?
People think it’s not a chronic disease and are misled by wrong information or guidance. We, the lucky ones, are temporarily physically challenged persons with AS. But the less fortunate ones suffer fused bones which make them permanently disabled.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
I will not try Ayurvedic medicines again because they used steroids in the medicines. Homeopathy didn’t work for me as far as AS is concerned. I have started on naturopathy medicines for the last 6 months just to recover from the damaged caused by other medicines and to stay healthy but it will take a lot of time. Yoga didn’t work for me but exercise has helped me a lot.
Has it been difficult emotionally to cope with your condition?
When my pain started in 2013, I had neglected it. But now I feel frustrated when the pain starts, because pain killers also fail to provide any relief. And I see my wife also getting worried because of increasing financial woes.
How has your family supported you?
My friends and relatives stay away from me because of my condition. Few came forward to help but, they cannot always help me because they know I work as a labourer and cannot pay them back. I have mainly received help from people who don’t know me, but have empathized with my pain and suffering and difficulties I go through on a daily basis. I have even begged for money, but help has been scarce. It is a miracle that I’m still alive.
How did you manage the financial burden of your treatment?
I belong to a lower middle class family and without God’s blessings and people’s prayers and blessing it was next to impossible to carry on with my treatment. I am deeply indebted to some people who have gone out of their ways to help me financially, when my relatives turned their backs on me. I would like to mention their names: Pintu Da & Rupali Di, Fr. Peter, Fr. Jijo, Fr. Mathew G., Fr. Umakant, Fr. Anthony R., Rizwan Bhai, Rajesh Bhai, SanjoyDa, Sohrab Ansari Bhai, Durgesh Bhai, Rahat Bhai, Goutam Uncle, Devasia Uncle, Tanay R. Aunty, AnimeshDa, SurajitDa, TanmoyDa & NibeditaDi, SwarupDa, DebrajDa, AlakDa, NilasreeDi, DebayanDa, SomadityaDa, AnupamDa, P. Chakraborty, AjitDa, DibyenduDa, SaikatDa, GoutamDa, AniDi, AvijitDa, SoumitraDa, PurnenduDa, RajibDa, SumanaDi, RiteshDa, DeedeeDa, MihirDa, B.KumarDa, SubrataDa, AbhinavDa, SanDa, NilamDa, VijaytaDi, Praven, Priya Dessa, JosephDa & AparnaDi, Amit Uncle and Laltu Uncle, RakhiDi, Bhushan bhai, Madam Ami Shah, Jignesh Bhai, Pan Sir, Rishi Bhai, Babu Joseph Uncle, Rima & Family, Anthony Uncle, Joy & family, Binny & Family, Sajiv Verghese bhai, VijaytaDi, my wife, my mother-in-law, my sister and my parents. There have also been donors who have not revealed their names. Also a big thanks to Dr Alakendu Ghosh and Dr Parashar Ghosh and their team, and Dr Debanjali Sinha.
Did you see a counselor for support? Were you offered counselling by doctor?
My counselor is God, my wife and Ankylosing Spondylitis support group members.
What was the hardest part of the treatment? And what kept you going?
Getting the right doctor and treatment and medications were challenging. I am a witness to a 7 year old child suffering permanent damage in the right hand because of AS due to a lack of awareness, diagnosis and treatment.
Is there any personal anecdote that you would like to share with us?
I have emailed to the Prime Minister as well as to the Chief Minister Madam Mamata Banerjee asking for help, but I am yet to receive a response. I feel the government should come forward and t help us and these kinds of patients to lead a normal life, and enable health insurance and benefits. Apparently outside India, AS and related issues are covered by insurance, then why not here?
As told to Moyna Sen
