Uncommon Chat with a Rheumatoid Arthritis Specialist
Dr. Akerkar, Rheumatoid Arthritis specialist
One of the most interesting people I met last year is Dr. Shashank M. Akerkar, a Rheumatoid Arthritis specialist who practices in India. I was glad for the opportunity to interview Dr. Akerkar recently so you could meet him too. I got to ask him some challenging questions. And he gave some honestly enlightening answers.
Dr. Akerkar, thank you for doing this interview for our readers, many of whom live with Rheumatoid Arthritis (RA). What have you found to be the most surprising thing about treating RA? How a disease can cripple even a young, otherwise healthy individual. At the same time, the manner in which the disease settles (improves) with DMARDs in some patients – in fact we can literally see the (thickened) synovium melting!
What led you to choose rheumatology as a specialty? I was introduced to Rheumatology as my teacher was a rheumatologist during my post graduation course. The problem faced by patients with chronic autoimmune diseases & the sheer joy of seeing these patients achieve remission with therapy drove me to the field of rheumatology.
What is the most important thing you want people who have RA to know? RA is a disease with good outcome if properly managed. It need not be associated with persistent joint pain. You have to be the ultimate master of your RA with the rheumatologist as a guide and a facilitator.
People think RA disease is for old people. What was the age of your youngest patient? I treated a two year old with Still’s disease, a type of Juvenile RA. Adult RA is definitely not a disease of the elderly. In fact, Indian RA patients are different from the western population. We have one peak in the 20-30 years age group & the second one in the 5th decade. In fact, the 3rd decade of life is the most productive period of anyone’s life; hence early remission becomes very important.
We’ve talked recently on the blog about health-related internet usage. What is your opinion of this? This has been one of my curiosities & I have numerous studies & publications on the same. I have done some pioneering work in health-related internet usage patterns in India. (Note: Dr. Akerkar is the author of the first study of its kind in India looking at the health-related internet usage.)
Why did you decide to write an RA blog? What are your goals? RA is like cancer – better treated early for long term results -absolutely true. The main aim of starting the blog is increasing awareness among doctors, patients, & society as a whole. Any new RA patient in my area who gets deformities due to RA would be a shame on me, the health care professionals & the society as a whole. Awareness, early referral & early institution of DMARDs amount to half the work done in RA. This is surely the key to reducing RA-related suffering in the long run.
Secondly, research is continuous in RA. Getting this information to each & every RA patient in the language they would understand best is an additional mission. This way, I am sure they can make informed decisions in consultation with their rheumatologists.
Thirdly, the internet is full of negative thoughts about RA. RA’ers who improve with treatment generally don’t interact on the internet or take part in blog discussions as they are not as much hassled by RA. However, those with persistent disease tend to take part in online discussions & this increases the negative comments about the disease and the drugs.
For example, if you search Google for Methotrexate & RA (the patient comments on blogs rather than the informative sites), you would come across more pages with problems related to methotrexate rather than the benefits it imparts. This is what is presented to the patients when they surf the net. This blog aims to address this unhealthy picture by presenting a balanced picture, specific write-ups on taking care of the side effects.
How did you come across the RA Warrior blog? I located your blog on Twitter. It’s one of the best sites about RA I have come across. I am proud to say that ‘methotrexate rheumatoid arthritis blogs’ throws up RA Warrior as the first result & it deals this said problem effectively. Truly, you have been a great inspiration and guide to many RA’ers.
Thank you, doctor. It’s great to meet a doctor who knows how to use the internet to benefit and educate patients.
Can you tell us the most interesting thing you have ever heard from a patient? A strange belief of one of my patients regarding RA has been one of the most interesting things I’ve heard about RA. She explained an ‘RA concept’ as a gas related problem. The so-called gas moves from one joint to the other in turn inflating the joints. This is the joint swelling that we see!! The treatment would include deflating the joints by removing the extra gas in the body, the cause of this excess gas being dietary factors!!
That’s an interesting idea; I would like to have seen the look on your face when you heard that.
What is most rewarding about your work as a rheumatologist? The smile on the face of the patients once they are in remission.
Stay tuned for Part 2 of my interview with Dr. Akerkar. I’ll ask him about the biggest challenge he faces treating RA. And he’ll share the craziest treatment ever offered to cure Rheumatoid Arthritis. It won’t cure your RA, but it will make you laugh. Note: If you read this RA blog regularly, you may have already met Dr. Akerkar through comments on posts. This is not one of those doctors who hate blogs which we read about last week. This doctor actually has his own blog called Arthritis Support Board!
Recommended reading:
- How is Rheumatoid Arthritis Diagnosed? Part 1
- Palindromic Rheumatism Is Not a Rare Form of Rheumatoid Arthritis
- E-patients’ role in Healthcare Social Media: Do Doctors Hate Blogs?
Thanks for the kind introduction.
Excellent interview Kelly. Congratulations on a job well done. Your post is once again informative and helpful. Dr. Akerkar seems to be a very open minded doctor who understands the “patient’s” side of RA.
Since I’m in the market for a new Rheumy that actually cares maybe I should move to India? LOL…As always Kelly, you’ve done a great job and shown the caring side of a doctor who believes what we feel.
Kelly I would appreciate you taking down my webmail address, you state it is required we post it then say it wont be published, this is the second time I have had to ask you to please not use my email address on my comments, it is starting to turn into a pattern with you…. thank you and I won’t leave anymore comments on your site since this seems to be your intent- Viesta
It has not even been 20 minutes. See my reply here at this link which I just finished typing. I do not type quickly. I hope anyone with questions will see my previous statement. I do not publish emails. It was user error.
Also, you did not mention where to look for the email address you claimed I published. I had to search the comments to try to figure out what you were talking about since I don’t do that. It took me a while to find it.
You accidentally put your email in the box which says “name.” As I said, I’d be happy to edit that for you if you like to get it off the screen, but before I could even do that, you posted this second complaint. I do work on the blog full-time without pay, but I also have to homeschool & raise my kids. I am not online at all times. Please forgive the 20 minute delay – which is now probably 30 minutes because I had to come reply to you again.
Since you still don’t believe me, I have blacked out your email & printed a screenshot here:
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Aside from the information provided in this article it is also nice to hear about a doctor that is kind, compassionate, genuinely interested in medicine and helping people – the kind we would all like to have 🙂
Yes, I get the impression that the doctor does want to see us do better. I like how he says we are on the same side with RA as the enemy.
Kelly, thank you so much for this! It was really nice to see that rhuemotologists are human! He has some really wonderful information to share. I would like to know if any of this information differs for those with AS. I know most of the time the treatment is the same for AS patients.
Thank you so much Kelly for your dedication and inspiration!
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“Thirdly, the internet is full of negative thoughts about RA. RA’ers who improve with treatment generally don’t interact on the internet or take part in blog discussions as they are not as much hassled by RAA. However, those with persistent disease tend to take part in online discussions & this increases the negative comments about the disease and the drugs.”
Here is the part where the good dr. seemed to have upset me. First of all, he acts as if there is NO reason, with the advent of DMARDS. that there would be those of us that would still have very active and progressing disease. Well, guess what Doc? Many many of us have tried all the CURRENT treatments, and they don’t work. Also, of those people whose treatments do work, ask them still if they would like to trade places WITH YOU? I’d gladly trade even my best days with RA for your days without RA. And that is why we get upset with drs. We are not yet as celebratory as you are. When we can go back to our careers, think about having as many kids as we want, and stop spending ALL of our disposable income (and some nondisposable income) on treatments and drs. visits, THEN I will jump online and pen a blog that sends out more “positive” messages to the RA community. Until then, I’m going to tell the truth, negativity be darned.
-RA SB
Dear RA SB,
I fully agree with the first half. Rheumatology is still not a perfect science. We have been able to help many but not ALL. As I have pointed out in my post (http://doctorakerkar.wordpress.com/2009/10/19/do-all-patients-with-rheumatoid-arthritis-fare-badly/) most do well but there is a definite subset of patients who do not settle down despite all the DMARDs/ biologics.
But, the best strategy to overcome this is to diagnose RA early, treat it aggressively & aim for complete remission asap. Many of those who are not settling despite the current therapy are those who have been diagnosed late/ started on DMARDs late.
Anything that deviates a RAer from the ‘early diagnosis/ DMARD therapy’ path is a disservice to the RA community. I’ll give an example. I saw a young lady with RA some 7 months back. She had symptoms since 2 months. Given the short duration, she had the best chance to go into remission. I explained her about RA & told her about methotrexate. She came back the next week. The first thing she told me was she was not convinced that she would ever do well. The next thing she said was that she would not go ahead with methotrexate. I was shocked. It did not take me long to find out the reason for the same—the net. She had visited numerous blogs; only to find that RA never ever settles with the best of treatment & methotrexate is a bad drug to take. A disservice to her I am sure…that is also the reason why many Docs have said ‘I hate my patients when they surf’. If the patients start taking such important decisions based on the net blogs, somebody has to step in & present a balanced picture.
That is also the reason why I said ‘I’m proud to say that ‘methotrexate rheumatoid arthritis blogs’ throws up RA Warrior as the first result & it deals this said problem effectively’ in my interview. Kelly has done a wonderful job in presenting a balanced picture.
As a Rheumatologist, we are as human as anybody else. Nobody would be happy to see somebody writhing in pain, marriages on the rocks due to RA, children suffering due to mother’s ill health. But, then the best way out is to help the newly diagnosed to achieve remission & not let them get diverted from this path.
Let us ALL work together constructively for the betterment of all the newly diagnosed & other RAers.
In fact I forgot to write the second half of the story.
How did I manage to convince this lady? I asked my secretary to help her with a small quick survey. She spoke to all the patients in the in the waiting hall. 90% were doing well, with their RA controlled. Only one of them was not comfortable with methotrexate.
So, she made her mind to start methotrexate.
Presently, she is in remission. I requested her to post a reply on the blogs she had seen. But, she was so busy with her career, kids that she had no time to surf the net, go back to the blogs & put in a reply!!
Dear Dr. Akercar,
Thank you for responding. I definitely see how the girl in your example was not served by her initial web surfing of the disease. And no, I would NEVER say that MTX does not help. It does. But in my case, it is a difference of being in the hospital or not, not the difference of living a quality of life or not. That is no longer an option. I am only 34. I was diagnosed with RA at 29, having only had symptoms since the age of 28. The Dr. who diagnosed me was Dr. Robert Lahita. You may have heard of him. He is a foremost Lupus expert. I was sent to him for that reason; the ER doc suspected Lupus. Obviously, he was wrong. But he was still a very nice man.
In any case, I was treated aggressively by both of the rheumies I have had, and yet the RA progresses quickly, and the drs. cannot guess why. I am currently on 11 medications including mtx and simponi. There is nothing else wrong with me except for some slight hypothyroidism. I have an MA, married to a supportive husband with a good profession. We have one child.
Our lives have been ROCKED by RA. I have not been able to return to work, a career I loved. My Dr. finally admitted to me last year that I likely never would. Our finances are a mess having dipped into our retirements and spent all of our savings trying to fight the disease, and most heartbreaking of all, we cannot imagine having another child though we want one with all of our heart. I am far too ill. I can hardly keep on weight at this time.
My rheumy admits that my RA is “overly symptomatic,” and she cannot figure it out.
The web has saved me because there are times when I feel that my story is in the minority, that I’m almost doing something wrong. But after looking online, I find that I can find many many young women with similar stories. That is why I think that the bottom line is that the biologics and DMARDS are NOT as effective as the medical profession believes them to be. They think b/c we are being kept out of the ER’s and the swelling can be visibly reduced (sometimes) that this is success. But to a young woman with an MA and a young family who can barely feed herself, this is no success. So please understand we have much further to go with this disease than people think.
If you would like, please check out my blog: rasuperbitch.blogspot.com It is not a factual website, not meant to be, but most agree it is very well written. I think it will give you some insight into the pain and struggle RA brings. Thank you again for your response.
Dear RA SB,
I fully agree with your views. We are better off as compared to our parents as far as managing RA is concerned but we have definitely NOT mastered it.
Every now & then, we come across RAers who just dont seem to settle, irrespective of what one does, how aggressive one is.
I also agree that the text book RA & remission is different from the real RA & remission.
With the inputs from all of you, I definitely hope to understand the other side of the story & improvise for the betterment of my RAers.
My brother is having this problem for over two months now and has dufficulty noving his whole body I need serious consultation from Dr. Akerkar
Thanks
Having only just read all these comments i must admit, being on the verge of trying out one of the biologics (embrel) due to the MTX not doing what it should be, i am shifting (albeit slowly) from being very positive about my RA to becoming ever so slightly negative – with questions like ‘why aren’t the drugs working?’ and ‘why do i have to try/take others’ /’why do i have this stupid disease’ whereas before i was thinking ‘oh well, im sure i can handle it’ – i can easily see how one could become very depressed quite quickly when things aren’t working out as they should be..and sometimes reading negative posts from others who are so much worse than myself can also add to my own lowness making me thing ‘could this be me soon?’
My point is that it would be really good to see many more of the positive posts from people whose treatments ARE working..However i am a pretty upbeat person generally so won’t be beaten easily by negative blogs or RA itself. Thanks Dr Akerkar for all your support on this wonderful website!
Sara
Sara, I’m sorry you are feeling low. These seem like normal thoughts and stages to me with dealing with RA. Mtx is a wonder & it’s enough for a small percentage. A large percentage never live without pain or get to feel normal again. I think docs who are optimistic and tell us to fight – Like Dr. Akerkar are wonderful.
It can be frustrating though if we are surprised that we realize “the drugs aren’t working” because we still have RA. It’s good we can talk with other patients at that point.
Sara,
I can understand what you are going through. Methotrexate alone is probably not enough to control your RA. Biologics remain the next obvious step if DMARDs are not enough. However, if you have to switch over to enbrel/ methotrexate combination, take the decision asap as it makes sense not to let the RA inflammation remain unchecked for long. The time spent in achieving remission gets magnified in terms of disability & deformities later.
Believe me…please don’t underestimate biologics. They are very effective in controlling RA activity. They do work in the majority of RAers. I sincerely hope that this is a passing phase & you’ll see a turning point soon.
RAers who do well generally forget about their RA & are generally not involved in blogs & community sites. they generally do not speak about their RA. In fact all of us should be starting a campaign wherein they help other RAers who are not doing all that well.
Dont give up… conquer your RA.
Nobody can defeat a person who refuses to give up….
WOW..thank you for all that – will take heed of your obviously very knowledgeable advise – however i have also tried to send you a few q’s to your personal blog, but it didn’t seem to post, I will try again. Thanks again…S
Dear Dr Arkekar,
Good day..
I am Rakhi Mahbubani from Jakarta Indonesia suffering rheumatoid arthritis in the right knee and left ring finger swollen, already two years have been taking medicine steroid medrol 4 mg half tablet daily + MTX 6 tablet in a week and calcium + folic acid but I’m still suffering the pain and limping while walking (the local doctor of rheumatologist in Jakarta has suggest me to do a surgery to clean the inflamation which will help to reduce the swollen and will help to reduce the pain)
Dr i need your guidance and opninion is the surgery necessary as I’m planning to come down to Mumbai on the 11 of December 2010 to do something for my treatment.
I would appreciate if you can help and reply to my problem.
Awaiting your reply.
Thanks Regards,
Rakhi
Dear Dr Arkekar,
Good day..
I am Rakhi Mahbubani from Jakarta Indonesia suffering rheumatoid arthritis in the right knee and left ring finger swollen, already two years have been taking medicine steroid medrol 4 mg half tablet daily + MTX 6 tablet in a week and calcium + folic acid but I’m still suffering the pain and limping while walking (the local doctor of rheumatologist in Jakarta has suggest me to do a surgery to clean the inflamation which will help to reduce the swollen and will help to reduce the pain)
Dr i need your guidance and opninion is the surgery necessary as I’m planning to come down to Mumbai on the 11 of December 2010 to do something for my treatment.
I would appreciate if you can help and reply to my problem.
Awaiting your reply.
Thanks Regards,
Rakhi
Only if the rest of the doctors had the same concern and care and would listen to you.
Its been almost a year since I am detected with RA. It started with a swollen knee and thereafter all the joints. I was on steroids for 2-3 months due to which my joint pain reduced drastically. Now I am only on sulphasalazine (saaz) tablets and on the verge of ending the dose. Its just sometimes that my joints are really paining and I have to take Naproxyn.
There was a time when I was detected with RA and I was pretty tensed … didn’t know what to do and how i am going to get cured. But now I don’t have any pain. So those detected with RA, be optimistic!
You have not addressed the people who have other issues besides RA. In addition to RA I have fibromyalgia, osteoarthritis, borderline diabetes & high blood pressure. Also very sensitive to aspirin products. I tried sulfasalizine & methotrexate- it hurt my stomach. Medrol raised my blood sugar. Mobic raised my blood pressure (had to go to ER) & add 2 more high blood pressure meds. I am currently on plaquenil & arava. (amazing I could tolerate these). But I am in active RA flare in hands & feet. I am afraid to try anything else, because of all the other meds I take & the side effects I get. I have had several days when the RA flared along with the fibro & I could not walk at all! When the muscles act up along with all the joints, it’s very painful!
I think it’s wonderful that a rheumatologist will share information on a blog – not just dispense it carefully in appointments at great cost! (Leaving people to come up with their own answers to whatever questions they have between visits.)
agreed!
For last 7/8 yrs I am suffering from pain on my wholebody, specially on my hand, body feels heavy, i used to get tired. in a year sometime it increases , it is not that painful butsort of cramping. i have acute problem of GAS, my uric acid is not that high, I dont know which doctor to contact.
osteoarthritis in knee.what to do for pain and suggest exercise.
My wife age 66 ,is one of the luckiest RA persons to be under treatment of Dr. Shashank Akerkar.He has not only educated us about the RA but also taught us emergency action plan in case of RA flareup. She is very well and happy with the treatment.As for the treatment with DMARD , we have noticed that the advanages with these drugs outweigh the side effects. The drugs are well tolerated. I am also happy that she is quite well with the minimal of the dosages.
His blogs are written in very simple and lucid manner, understandable to even a layman.
On face book as well as on twitter, he keeps the readers about Auto immune diseases updated to the latest research on Auto Immune diseases on regular basis.
Thank you Kelly for publishing our Doctor’s interview. Thanks again !!
May God bless you and Doctor AKerkar, with more tools to conquer the diseases !!
Dear Kelly,
I love to read Dr Akerkar blogs…he is very frank and informative. Thank you for doing this interview with him and making us aware of his blog site.
Health and blessings,
Ann
Sir akerkar,
I am one of your old patient. Now i am living in dubai.Due to some reason i am unable to come india till next four month.I am suffring from thyroid for last 6 month and getting treatment from you.you gave me thyroup 25 which i am having regularly. The problem is my current thyroid level is same as it was while i first time check up with you. Could you please give me your email address that i can send my report and would you please suggest me something good. Please sir.