This is definitely one of the best ways to understand the ailment in its entirety. However, given the long queues at our clinic, time is becoming a scarce resource. We need to listen to the patients so that we understand the intricacies of the disease & also not miss out on anything.
However, you can help us in this endeavor to listen to every important point of yours with these smart tips.
1. Always remember that if you organize everything before the visit, you can make the most out of it.
2. For the first visit, a neatly written description of your history with specific details of hospitalizations & important reports. This is especially helpful especially if there are multiple files.
3. List of all medications including alternative therapy ones.
4. Share details of your family history – these details can help reach a diagnosis. It also helps understand the risk of developing a disease.
5. Always enlist your concerns & particular questions- you will be focused & happy at the end that all your questions were answered.
6. For the follow up visits- discuss your life (personal, professional, family) goals. This helps us understand & plan therapy accordingly. Make your Rheumatologist a partner in achieving the goals.
7. For the follow up visits- discuss any major life decisions you are planning to take especially if the reason is related to the ailment.
8. Before leaving the clinic always check that you have understood all the medicines.
9. Ask for any warning signals that you should watch out for & report immediately.
Yesterday, I met one of my regular known patients who had come with sweets to announce a new arrival in his family. Why known? …. Because he has taught me an important lesson. AN INDIVIDUAL IS MUCH BIGGER THAN HIS/ HER DISEASE. Now, what does that mean?
Samir, a young man in his early thirties consulted me almost 3 years back. He was suffering from Ankylosing spondylitis for 6-7 years. Apart from the disease details, I could make out that he had seen his life go tospy turvy in these years. Right from the first day, I realized that there was something different about him. Once the discussion about his Ankylosing spondylitis was over, he would make it a point to talk about his life, his goals & ambitions. In fact, I felt as if he was laying down a roadmap of what he wanted & asking me to help achieve that with the medications.
From his talks, I understood that he had a saree shop. He was unable to manage it due to his backache & his wife had to do the needful. His social & married life too was in bad shape due the persistent pain. Once as he was talking about his life, I asked him to take time out to put down his wishes & priorities on paper & bring it during his next visit.
This is what he had listed-
1) Conquer his pain & the disease
2) Get back to work. Manage the shop on his own
3) If possible, change the business into some other business that was more manageable. A saree business required one to travel to distant areas to buy sarees at a cheaper cost & for variety.
4) Once the financial situation improved, think of starting a family.
As I said, he had given me a roadmap to work on. We started the work together.
DMARDs were not helping him. We discussed about biologics. In India, biologics is never an easy thing as these are expenses out of pocket. He spoke to his wife, the seniors in the family, friends & mustered sufficient funds to start & sustain the treatment. I did my part & managed to provide the most from the company’s ‘Patient assistance Programme’.
As I think about it today, the rest is history. He did well with biologics. He achieved his first goal of conquering his pain & the disease in the subsequent months. He was managing his shop well. His profits improved. With these resources, he could manage the biologics on his own. After a year, he decided to shift over to a DTP business. He undertook a part time course to learn DTP. A DTP business does not require traveling or lifting weights. His plan was clear. Once the business was set, he would employ the staff & get the work done. This was clearly a good decision given his condition. His DTP business stabilized over a period of time.
Yesterday, he was at the clinic not for a consultation but to announce a new arrival. I was moved. He had indeed come a long way. Though this would sound like a fairy tale, but it isn’t. There were many obstacles particularly with the finances for the biologics. But, since he had mentioned his priorities & made me a partner not just in achieving remission but also in his life related goals, our path was clear.
Please understand that you are not the same as your disease. You are not ‘a case of Ankylosing spondylitis’. That is so not right. Your life is much bigger & you should not forget your professional, personal, social, marital life. Talk about your goals, aspirations with your Rheumatologist. Apart from ensuring that your disease goes in remission, we can plan & help you achieve these goals.
Time & again, rheumatoid arthritis gets labeled as a lifestyle disease. In fact, just came across an article that blames genes, stress & poor sleep for causation of Rheumatoid arthritis.
By definition, lifestyle disease is a disease caused by the way a person or a group of people live. Lifestyle diseases include Type II diabetes, hypertension (high blood pressure), dyslipidemia (high cholesterol), obesity. The definition also includes diseases associated with alcohol, tobacco & drug abuse.
Rheumatoid arthritis is an autoimmune disease. Normally, body’s immune system is designed to fight microorganisms causing infections. Due to various reasons, the immune system may start considering its own body organs as foreign and attacks it. This self intolerance is known as autoimmunity. In Rheumatoid Arthritis, synovium (inner lining of the synovial joints) is considered by the immune system as foreign & bears the brunt of the attack. The immune attack causes pain & swelling of the joints.
As we have seen, one’s lifestyle has nothing to do with the immune attack & is not causative. It is a great injustice to patients with Rheumatoid arthritis to get blamed for their lifestyle & be at the receiving end of unnecessary advice.
We have already seen (in the last blog) the theoretical possibility of a ‘Low starch diet’ being beneficial for Ankylosing Spondylitis. Let us now see whether it really works in real life & whether there is sound medical evidence to support it.
Today’s medicine works on the basis of evidence. If a new medicine/ intervention is thought to be useful, it is tested in clinical trials. A group of patients is given the standard treatment & placebo (an inert substance that has no effect on disease activity) while another comparable group is given the standard treatment & the experimental therapy/ intervention. A ‘double blinded study’ that ensures that neither the investigator nor the patient knows whether he is taking the experimental drug or placebo is ideal to avoid any bias; both on the investigator or the patient front. This is not possible for studies with dietary modifications as blinding is not possible & bias tends to creep in.
As against medicines, it is very difficult to keep an exact track of the diet of any patient for obvious reasons. It is extremely difficult to ensure that a patient sticks to a particular diet in the long run throughout the study period.
These two factors make studies based on dietary interventions difficult to conduct as well as interpret.
For the reasons mentioned, there are hardly any studies about ‘low starch diet’ in Ankylosing spondylitis. In 1996, Dr. Ebringer discussed the disease activity trend of one of his patients following the diet for a long period (1983- 1995). His ESR showed a continuously decreasing trend. In another study (mentioned widely on the internet with no reliable data available on any of the medical literature sites) 36 patients received Dr. Ebringer’s diet & showed considerable improvement in symptoms. These two studies would be highly inadequate for any definite conclusions.
So, as we have seen, the utility of ‘low starch diet’ in Ankylosing spondylitis is not yet proven scientifically.
One way of looking at things would be to give it a try & see whether it works. However it has to be weighed against the risks involved in pursuing such a diet.
In the next blogpost, let us look at what a ‘low starch diet’ includes/ excludes & the possible health hazards of such a diet.
Many patients keep asking me about the role of ‘Low starch diet’ to control Ankylosing Spondylitis. This has been a hot topic of discussion on most Ankylosing spondylitis groups on social media & many confirming the good results of a low starch diet.
The original idea of a ‘low starch diet for Ankylosing Spondylitis’ comes from Dr. Alan Ebringer, Prof of Immunology at King’s College London. He found high levels of a gut pathogen called Klebsiella Pneumoniae in stool samples of patients with Ankylosing spondylitis. He also found high levels of antibodies to klebsiella in the blood of patients with Ankylosing spondylitis. These findings indicated the presence of the bacteria in the gut of patients with Ankylosing spondylitis & the body’s immune reaction to it.
These findings evoked further research & Dr. Alan’s further research showed that K. pneumoniae was isolated more frequently during the active phase of Ankylosing Spondylitis & clinical relapse was preceded by appearance of the bacteria in fecal samples. This meant that Klebsiella Pnemoniae was somehow related to inflammation of Ankylosing Spondylitis.
Dr. Alan’s research continued & he went on to show that there are similarities in structure of the HLA-B27 molecule & enzyme Pullulanase produced by the Klebsiella bacteria. There is also similarity between the enzyme & type I, III & IV collagens found in joints & other organs. This gave rise to the ‘Molecular mimicry theory’. The human immunity recognizes Klebsiella as foreign & attacks it. However, since HLA-B27 & collagens have similar structure, they get attacked to. This may be responsible for the inflammation in joints & other structures like the eyes in Ankylosing spondylitis.
One can infer from the proposed ‘molecular mimicry theory’ that by reducing the klebsiella bacteria in the gut, one can reduce the inflammation associated with Ankylosing spondylitis.
Various studies have shown that the gut bacteria including klebsiella grow on undigested starch in the gut. Hence a reduction in starch in the diet may help reduce the klebsiella bacteria in the gut. Klebsiella bacteria is well adapted to the human gut & produces the Pullulanase enzyme that can break down the starch, derive nutrition & thrive in the gut.
The rationale of the ‘low starch diet’ is to cut down on the starch, make life difficult for the klebsiella bacteria. This may indirectly help control the Ankylosing spondylitis.
This is the exact basis of the ‘low starch diet’ for Ankylosing Spondylitis.
Now that we know the basis of the theory, we also need to look at the following points—
1. What is a ‘low starch diet’?
2. Are there any studies conducted in patients with Ankylosing spondylitis to prove the benefits of ‘low starch diet’?
3. If the concept looks so convincing, why do Rheumatologists not recommend it on a regular basis?
I would be answering these questions in the subsequent blog posts. These posts are coming soon & follow my blog so that you don’t miss out on any of those useful posts.
References: Erbinger A, Wilson C. J Med Microbiol 2000; 49: 305-311 http://jmm.sgmjournals.org/content/49/4/305.abstract
‘Doc, I have had rheumatoid arthritis (RA) since last 10 yrs. I know this terrible disease inside out. It has ruined my life. I do not want my daughter to suffer from this. Can I do anything to prevent rheumatoid arthritis in her? Does science have any answer? Are there any meds/ strategies to prevent rheumatoid arthritis?‘
The words of my patient are still echoing in my mind. ‘Does science have an answer?’ For a long time, we were grappling with the best strategy to control RA. Hence, majority of the research was directed at this.
However, importance of the ‘pre-RA’ phase has been understood. ‘Pre-RA phase’ is the phase before the symptoms of RA actually appear. This phase is important from the preventive perspective.
We do know about a few proven strategies to prevent RA.
1) Smoking cessation — The risk of developing RA is about two times higher for male smokers than for nonsmokers. For women, the risk for smokers is approximately 1.3 times greater than for non-smokers. (We have seen this in detail previously)
2) Dental hygiene—Periodontal disease is a proven risk factor for RA. (We have discussed this previously on the blog)
3) Optimal body weight. This is a recent finding. We would soon have a dedicated blog post for this. As of now, aim at a healthy body weight to reduce chances of developing RA.
4) Adequate vitamin D intake.
A study specifically looking at the various risk factors for evolution of RA in those with family history is underway & should provide further insight.
So, RAers; your daughters need not suffer the way you did. We do have these definite, easy strategies to prevent RA in those genetically predisposed.
Lupus has long been represented by two mascots: wolf & the butterfly.
The word ‘Lupus’ (Lupus- wolf in Latin) was coined by a thirteenth century Physician Rogerius as the facial lesions in Lupus looked like wolf bites. The butterfly as a mascot has its origin in the butterfly shaped malar rash seen in SLE.
There have always been debates regarding the ideal mascot for lupus. The wolf is a sinister, cunning animal. It aptly represents what Lupus can do to a person & also represents the origin of the name. However, as a mascot, it has a negative impact.
As against this, butterfly is beautiful & represents vitality. Many have even compared the life history of a butterfly emerging from a cocoon to a Lupus patient emerging with flying colors from a flare.
As I was reading the journal Lupus the other day, a beautiful explanation held my attention. The author MJ Fritzler has highlighted the Greek mythological story of the Pandora’s box in an article.
According to the Greek mythology, Zeus, the father of the Gods & men, ordered Hephaestus, the God of craftsmanship to create Pandora, the first woman on earth. She was endowed with many gifts: clothed Athena, endowed with great beauty by Aphrodite, and eloquent speech by Hermes. After Prometheus stole fire from heaven, Pandora was given a beautiful container by Epiphemus. Pandora was given explicit instructions not to open the container under any circumstance. However, another of her God given traits, curiosity eventually got the better of her & she opened it only to find that all evil escaped & invaded the entire earth. Realizing her error, she tried to make amends by closing the container, but the entire contents had escaped, except for one thing- a winged creature with iridescent wings – the personification of Hope named Elpis.
This story would aptly describe what a Lupus patient goes through. Once diagnosed, it seems like the Pandora’s box is opened because ‘all evil’ seems to break loose. It is the butterfly that gives the hope.
Indeed, over the years, the butterfly has brought hope to lives of Lupus patients & the prognosis has improved significantly.
Boltzer JW. Systemic lupus erythematosus. I. Historical aspects. MD State Med J 1983; 37:439
Lahita RG. Introduction. In: Lahita RG, ed. Systemic Lupus Erythematosus. New York: John Wiley and Sons. 1987; 1-3. (Fifth edition published 2010)
Reflections on Lupus 2013: butterflies, wolves and prophecies MJ Fritzler Lupus, October 2013; vol. 22, 11: pp. 1092-1101