RAers- help thy brethren- ‘RA voice campaign’

Let me confess that this post has been inspired by Sara’s (twitter@stableantics) recent post. Recently, when she was depressed with the aggressive RA, the negative posts about RA on the internet made things even worse for her. She wished that there were some positive posts about RA from RAers whose treatment was working.

I’m sure most of you must have gone through a similar experience. Most of the blogs are full of negative thoughts about RA & the various DMARDs/ biologics. (surely, there are a few exceptions like rawarrior who have been spreading awareness about RA as well DMARDs.)

The negative thoughts work in a different way as well. 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 following week. The first thing she told me was that she was not convinced that she would ever do well. The next thing she said was that she would not go ahead with Methotrexate. She cited the side effects of Methotrexate as the reason for the decision. I was taken aback. It did not take me long to find out the reason for the same—the internet. She had visited numerous blog- only to find (get misinformed) that RA never ever settles with the best of treatment & Methotrexate is a bad medicine to take.

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 waiting lobby. 90% were doing well, with their RA controlled. Only one of them was not comfortable with Methotrexate.
So, she made up her mind to start Methotrexate therapy. Presently, she is in remission. I requested her to post a reply on the blogs she had seen. But, she got so busy & interested in her career, kids that she had no time to surf the net, go back to the blogs & put in a reply!!

Similar to this lady, 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. This is a normal human tendency & one cannot be blamed for the same.

So, can RAers who have done well stand up & be counted. This is an earnest appeal to those RAers who have done well with treatment. In fact, in practice most of the RAers do well (especially those who have been diagnosed early/ treated with DMARDs early). All the RAers may not be as fortunate as you have been. Some of them have persistent pain despite the best of treatment. However, a few encouraging words from your side can make a huge difference to them as well as to those who have been newly diagnosed with RA. This is the time for you to give back to the community & internet what it has given to you. You may share your experience about the conquest over RA here. I am starting the ‘RA voice’ campaign. Please be a part of it & help other RAers.

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83 Responses to RAers- help thy brethren- ‘RA voice campaign’

  1. […] This post was mentioned on Twitter by Brandy E. Jones, Dr. shashank akerkar. Dr. shashank akerkar said: RAers- help thy brethren- 'RA voive campaign': http://wp.me/pEF1Q-13 […]

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  2. Purba says:

    Yes, I am doing well with my RA. Now it has almost gone to the remission period. Since my RA has been diagnosed early, I am almost cured in 3 to 4 months. And it is a great relief.

    I know pretty well about the negativity that is found in the web about RA. Few months back when I was diagnosed with RA, I was terribly horrified. I thought why it happened to me. I searched the internet and found maximum of negative comments. I searched the internet again for a good doctor who can help me out. Then I came to know about Dr. Akerkar. I went to him as a patient. Until that time I didn’t know anything about this blog. He was the first person who told me that RA is curable. Then medication started and now today I am almost curable. I am giving a small example about how much confidence I gathered today despite of having RA. I had pain and swelling in my ankles. Few months back every time I restricted myself from long walks. Now the situation is, 15 days back I had gone for a whole day trekking :). And after returning from the trekking I didn’t feel pain in my ankles……Wow!!! Now I can live a normal life. Thanks Dr. Akerkar and thanks to internet too, because for this internet I found my doctor :). Thanks Dr. Akerkar for all your support, I am with you in ‘RA Voice’ campaign.

    Purba

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    • Raghuvir says:

      Wonderful experience.Thanks for encouraging experience.I wish you a healthy life.Today only my daughter visited Dr.Akerkar and she received very encouraging words from him.My daughter is diagnosed for very ealy arthritis9Simple),but she had gone through internet earlier and she was terrified.Thanks to dr.Akerkar for the encouraging words.
      Raghuvir

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      • Thanks for sharing your story, Mr. Raghuvir.

        Your daughter has mild arthritis & should settle down. Do not get hassled by the negative information about arthritis you may have come across on the net.

        I’m sure she’ll do well. Please do come back & share the story again later. Your story would help many others on their search about arthritis on the net.

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  3. Nora says:

    It’s true the new medicines and combinations of medicines are nothing short of miraculous. If you can see a doctor, please do, and HURRY! This diagnosis doesn’t have to be a death sentence. I’ve met many other people with RA, and they are living again.

    Like

  4. Erica s says:

    this is so timely as all the negativity I had been seeing was getting to me too.

    Like

  5. Kelly says:

    Dr Akerkar, As always you have our best interests at heart and we appreciate you for that. Plus, you are right, as usual.

    Like

    • Thanks Kelly,
      You have been the source of authentic RA information for many. Keep up the good work!

      Like

      • kavitasharma says:

        Hi Purba, i am 27 one of the patients of Dr. Akerkar. I was prescribed SAAZ DS regular dose. But, I have heard people saying n read that regular medicines can harm our body organs on a long term, so stopped taking it even after doctar’s strong prescription. Please share me much about ur experience.

        Like

  6. nageshaw says:

    Thanks to dr Akerkar. My wife was suffering from knee joint pains, pains in fingers.The fingers also started swelling and disfiguring. Before we consulted Dr. Akerkar R.A. Test was negative. Hence RA was ruled out by many doctors. Dr.Akerkar examined her and all other reports and conveyed that she has RA even if RA test indicate negative. He further assured everything would be all right within a couple of months. The treatement started 5 weeks ago and there is considerable improvement in her condition. swelling subsided, 90% pains gone, difurement of fingures stopped. I am now confident that she will be able to lead life reasonably well. Since she is 62 years old, old age factors may play but that is quite natural and acceptable.

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    • True… RA test is not a confirmatory test to diagnose RA. Almost 35% RAers are negative for RA factor.

      Like

      • kavitasharma says:

        Hello doc, I met u in Ajit Scanning n first at Mulund Clinic. I have to Delhi from quite some time. I met an aunty here suffering from RA. She is under medication since 35 years. She is almost on bed since that period. Doc I am afraid, I m still not married, is it curable, can I get married. Many questions in my mind. I am exercising daily n was fine, but again I m having back pains. I was prescribed SAAZ DS 2 doses regularly. Shall I continue taking it or change to some other medicines. Will I have to medicines lifelong?

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      • You have highlighted the point yourself Kavita. You met an aunty with RA who is been crippled due to RA. 35 years back, we hardly had any medicines for RA. She has been unlucky due to this fact. I’m sure we are much better off now.

        We do have effective medicines for arthritis. If you end up not taking medicines fearing side effects you are as good as the same aunty who did not get these medicines. Can you see your future 35 years from now without the medicines? There are sufficient checks in place to avoid side effects. The risk of ongoing arthritis inflammation is many fold compared to the side effects of medicines (taken propely & under expert supervision).

        As you have pointed out, you were doing well with sulphasalazine (tab. saaz DS) & exercises. The choice of Sulphasalazine was due to that fact that it is safe even in pregnancy. Please refer to ‘anti-arthritis drugs safe in pregnancy’ for the details. It is one of the most benign anti arthritis drugs as far as side effects are concerned.

        Please get back to sulphasalazine & exercises. You may consult a Rheumatologist in delhi.

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      • Dear Kavita,

        The law of attraction says ‘Whatever you give out in life is what you receive back. Give positivity & you’ll receive positivity. Give negativity & you’ll receive negativity.’

        Why not replace the negative thoughts of the medicine side effects & the worry about the future with the positive thoughts of conquering your arthritis. Anyways, you were doing well with Saaz & exercise.

        Every morning when you get up, hold you head high, chin up, take a deep breath & tell yourself that you will conquer your arthritis. Believe me, the medicines may work even better.

        Why don’t you give it a try….

        Like

      • kavitasharma says:

        Thank u Doctar!

        I have actually seen my Grandma in a drastic condition which was not even diagnosed “RA”. So, I am completely afraid about RA which is genetic disorder. However, I believe under ur supervision it will be fine soon. U r very kind sir.

        Like

      • kavitasharma says:

        Hello Doc,

        I am suffering from flare ups and I m short of Powergesic MR here. Can u plz suggest me its substitute.

        Waiting 4 ur reply.

        Like

      • You may take Tab. Combizox. But remember that it is an analgesic. Sulphasalazine remains the main drug.

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      • kavitasharma says:

        Thanks a lot Doc!

        Hope I get this here. Yesterday I took Paracetamol to get relief.

        I refer this blog from quite sometime n like it. I’ll to update my status on this.

        Good Day!

        Like

      • All the best & hope your conquer your arthritis.

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      • kavitasharma says:

        Doc, I got Mobizox n not Combizox here in Delhi. Is it fine if I take it?

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      • Yes. Start sulpasalazine & see a Rheumatologist asap.

        Like

      • kavitasharma says:

        Thank u Doc for ur help.
        I am new to this place, so finding a good Rheumatologist is difficult. However, will b back in a couple of months to Mumbai.

        Like

  7. rachel says:

    i also think all the negativity that i hv is because of this internet…atleast twice a day, i search fr RA, n prognosis n so on..
    the fears keeps my mind ocuupied most of the time n thats really too disturbing…..bt today ur post really was very inspiring..
    bt what i think is sometimes the pains give rise to these negative thoughts too…
    do negative thoughts increase pain?
    well,today i m very positive after this……

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    • Rachel,

      Yes indeed. negative thoughts do increase the pain. Stress & negative thoughts are known to lead to a RA flareup.
      ‘Life is simple. your life is made up of only two kinds of things- positive things & negative things. whatever you feel, whether good or bad, determines your frequency, & you attarct the people, & circumstances that are on the same frequency’ says Rhonda Byrne.
      Why don’t you read ”The Secret’ & ‘The Power’ by Rhonda Byrne (http://www.thesecret.tv/)…

      Like

    • Rachel,
      Have you heard about the ‘Placebo effect’? When trials of new medicines are carried out, the patients are divided into two groups. One is given the medicine & the other group is given a placebo. Placebo is an inert pill (looks exactly like the active medicine pill/ injection). Many patients do improve with this placebo. This is called the ‘Placebo effect’ & is a scientifically accepted phenomenon.

      Why do these patients respond to the inert agent? Probably because they took it with a lot of hope & positive thoughts. Positive thoughts do have the ability to heal & negative thoughts tha ability to worsen an ailment.

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      • nageshaw says:

        Placebo is nothing but positive hope given in physical form. Those who think that the medicin will cure me, will definately show noticable improvement. In fact, talking to a doctor in whom we have faith, itself has a positive effect. Medicines definately help but as is said “Its all in the state of mind”

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      • Rachel says:

        yep,heard about placebo.sounds interesting.what are endorphins? “the morphine within” read somewhere.positive thoughts increase their secretion n therefore lesser pain..well, an expert view will be appreciated.
        n will be waiting fr ur next post in the blog.
        good to see a rheumatologist with emotions for the patients…. 🙂
        tc

        Like

      • Yes. The new blogpost should be up soon.
        We would discuss about the endorphins. The blogpost would focus on the healing power of positive thoughts. ‘I will conquer RA’….. should be up soon.

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  8. sara says:

    I am flattered that I was the inspiration of this month’s blog, I am both encouraged and uplifted by all the comments so far. I still haven’t started Embrel yet (due to certain protocol the NHS has to go through for me) but am looking forward to potentially feeling a lot better, having a bit more energy and coming off full time anti-inflamatories.

    I am still full of anxieties regarding the RA and even more with the taking of the new drug, i.e., will it even work,? will I really feel better? will it lead to infections? Or will I have to try other drugs until they run out?

    But hopefully, these anxieties will be lifted for others and myself in my situation by more positive people with RA whose drugs have put them into remission, and if they have a minute in their busy full lives, to drop more positive comments on Dr Akerkar’s brilliant website …(only if they have time to stop of course ! ☺) hopefully more positive awareness will be spread.

    Yes. Agreed. pain = negative thoughts. You are right Rachel, negative thoughts may make pains feel worse but reading positive blogs like this lead to positive thoughts and positive thoughts ROCK!!
    Sara

    Like

    • Sara,

      I sincerely hope that you achieve conquest over RA with enbrel. I’m sure more & more RAers will join this campaign to help their brethren.

      Like

      • Purba says:

        Hello Doctor,

        I have a query regarding the combination of depression and RA.

        Does depression plays any part in deteriorating RA. As in our daily walk of life we get depressed for many reasons (not for RA :)…). I have noticed that whenever I get depressed and if it stays with me for more than 1 or 2 days, my RA gets deteriorated. Is it merely a coincidence or there are reasons behind it?

        Thanks,
        Purba

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      • Yes, Purba.

        Stress does tend to worsen/ bring up a flare of RA.
        Combination of DMARDs with positive thinking/ attitude remains the best treatment for RA.

        Like

  9. Serach on internet for any problem / disease is ok.We may get knowlege out of search. But letus not get carried away by the information we get. We might be seeing only negative informaton. There is also information which is positive.
    Also let us understand that internet cannot view or check us up physically. Same is about lab tests. They are indicative. Only corraboration of tests with physical examination can lead to diagnosis and the right treatment. This can be done by the EXPERT only.
    Let us have faith first in ourselves and then the doctor. If we don’t believe in ourself then how can we believe a doctor and the treatment he gives.

    Also we must keep our mind ready to assimitate the medicine given to us. Positive thoughts can do that.

    Let us help every one who is in search in the conquest over the disease, may it be doctor or a patient.

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  10. nageshaw says:

    You Can If You Think You Can!
    If you think you are beaten, you are,
    If you think you dare not, you don’t.
    If you like to win, but you think you can’t,
    It is almost certain you won’t.
    If you think you’ll lose, you’re lost,
    For out in the world we find,
    Success begins with a fellow’s will.
    It’s all in the state of mind.
    If you think you are outclassed, you are,
    You’ve got to think high to rise,
    You’ve got to be sure of yourself before
    You can ever win a prize.
    Life’s battles don’t always go
    To the stronger or faster man.
    But soon or late the man who wins,
    Is the man who thinks he can.
    ~ C. W. Longenecker

    Like

  11. Nagesh Wagholikar says:

    Read the latest update and your reply to my blog. I have decided to spread awareness about RA. However I do not know how to go about it.I feel like writing about RA, it’sseriousness if left untreated and most of all continuing treatement until the doctor asks to stop. This I would like to write in Marathi language. And the writeup to be got approved from you. The writeup may not be published but will be given at Kalyan to the patients coming for treatement to you.Or it may be given by you to a new patient. The medical language may be difficult to translate in Marathi. But I think I should do and I can with your help. Internet is not accessible to every patient. This is one way I have in mind. Your further sugeestions/guidance is needed.

    Like

  12. chhaya says:

    Dear Friends,
    My name is Chhaya, I am a Lupus patient since last 3 years.With proper medical care from my doctor & medication it is in remission at present. Thanks to my doctor, family, friends & all those who have inspired me to be positive for everything.
    Its not so that i didn’t have any bad time, i too felt low during my flare, but with all other measures, the positive feeling has made the difference.

    Sara, to your anxiety i would just like to add:
    Its all in mind, imagination is everything, if you think its going to work for you “IT WILL”.Have confidence in your healing power & you will be healed.

    One of the thing I practice is to be happy.
    We all have some liking or hobby, may be we have left it long behind, recollect it. Give it some time daily, you will enjoy it, you will feel satisfied.
    See yourself living in a perfectly healthy body & say to yourself day in & day out…i am getting cured & m getting better day by day…& feel the difference.
    Trust yourself, trust your doctor & the medicines & you will win the race.
    few things more on POSITIVE THOUGHTS on your feedback!!!!
    HAVE A NICE DAY & KEEP SMILING!!!

    Like

  13. chhaya says:

    Just read & wish to share:
    One tree makes 1 Lakh matchsticks.
    But one matchstick can burn 1 Lakh trees.
    Similarly one negative thought or doubt can burn thousands of dreams…
    Be Positive Always!!!

    Like

  14. Rachel says:

    hi..
    its fine that without having medicines,ra can lead to crippling. but what about the flare ups that ppl still get even while on medications.
    n that pain makes one depressed n fills with negativity.. which itself increases the pain…
    so what do they do in this?
    can u be positive when whole body hurts? n that too such hellish pain

    Like

  15. DCPatient says:

    Someone at today’s e-patient conference used the language “the obligation of the cured”. I think that applies here. Those of us with positive experiences as well as those with negative need to speak out to give a balanced picture of the condition for other patients.

    One other point is that if the tenor of posts upsets you stop reading them. Protect your mood and mindset. There are other ways to get information.

    Like

    • Precisely so… those who are doing well should help & encourage those who are not doing all that well. That is the concept of “RA voice campaign

      Like

      • Rachel says:

        exactly..
        even when my body is doing fine, even i myself feel as if i was exaggerating during the flare up… but when again it happens, then i feel like no, it was really painful… 😛

        Like

      • I am going to come up with a solution for you very soon. Watch out for the next post…’I will conquer my RA’…

        Like

      • I believe as you do, and I want to be an inspiration. My non-RA friends are inspired by my accomplishments in my 78 years with a 54-year-long history of RA , but on the RA web sites, it seems that RA patients don’t want to hear anything positive–they equate positive thinking with the people who have minimized their pain. That’s not the point at all, but I do believe a positive attitude and a determination to have a joyful life in spite of the pain helps a lot. And I am also doing very well on Enbrel, Mtx, Prednisone, Plaquinil & Mobic. My rheumatologist says her patients in my age group are the strongest, bravest women she knows because we had to tough it out without all the meds now available and without much hope. That made me very proud to hear that, but I sure am grateful I lived long enough to see biologics come around.

        Like

      • Yes indeed.
        Positive attitude with DMARDs/ biologics is the best remedy for RA. You should truly be an inspiration for other RAers.

        Like

  16. Nagesh Wagholikar says:

    If you Think You Can, You Can!
    You can be a total winner even if you’re a beginner,
    If you think you can, you can,
    If you think you can, you can,
    You can wear the gold medallion,
    You can ride your own black stallion,
    If you think you can, you can,
    If you think you can, you can,
    It’s not your talent or the gift at birth,
    It’s not your bank book that determines worth,
    And it isn’t in the color of your skin,
    It’s your attitude that lets you win,
    You can upset Connors or Austin,
    Or win the marathon at Boston,
    If you think you can, you can,
    If you think you can, you can,
    You can profit through inflation,
    You can redirect this nation,
    If you think you can, you can,
    If you think you can, you can,
    It doesn’t matter if you’ve won before,
    It makes no difference what’s the half time score,
    It’s never over until the final gun,
    So keep on trying and you’ll find you’ve won,
    You grab your dream and then believe it,
    Go out and work and you’ll achieve it,
    If you think you can, you can,
    If you think you can, you can!

    Like

  17. Aalap says:

    Hello frenz.I am suffering from SLE since last 2.5 yrs. Just wanna share my personal exp. with u all,These negative thoughts/misinformation on web has damaged my personal life.I searched the internet and found maximum of negative comments. I was totally breakdown when i first read about SLE..!! but in reality its not the case. with Tremendous support from my family,frenz& most important My doctor…I am doing exceptionally well in my life & doin my all routine work without any hurdle. so i am requesting all dont believe or trust all the info u find on web. just consult ur doc. 1st.believe in ur self & have faith in ur abilities.

    Like

  18. Chromey says:

    Thanks for the reminder 🙂 It is always easiest to post the bad…but how about the good.? It took me quite a while to get my head around RA, and what it was doing to my body. But I am thankful, that I live in an age where we can discuss things openly on the internet & see what treatments help others. I am on about my 8th enbrel injection and I am feeling much better. I am not as fatigued as I once was, which was the worse for me. I sometimes get some “flares”, but all in all life is better now, through treatments. I have a small Squidoo lens, if any readers want to post any other links or comments there to help RA awareness. Blessings to all who endure this Rheumatoid Disease.

    Like

  19. nageshaw says:

    Let us all of us say

    “ALL IS WELL !!!!”

    Like

  20. Sudha Rani says:

    Hello Doctor,

    I am suffering from whole body pains..muscle and joint pains since 4 months.ASO titre was more than 400 and the other were normal(CRP,RF factor,Uric acid etc).Doct said there pains are due to strep infection and gave antibiotics.After using the anti biotics for 7 days continuosly after 2 months i still have body and muscle pains.Could this be RA???i am very afraid i am just 25 years..please help?

    Like

  21. Sudha Rani says:

    Hi Doc,

    Please suggest any good Rheumatologist in hyderabad…

    Thanks..

    Like

  22. Shuvra Dey says:

    I had been diagnosed with rheumatoid Arthritis almost four years back.My wrists were badly affected with pain and swelling.Being apprehensive about allopathy treatment I opted for various other routes like homeopathy and ayurveda.But there was no positive improvement in my condition.Then seven months back I decided to give allopathy a try defying all myths about side effects.Initially I started with hydroxychloroquin,Zempred(steroid)and painkillers.I was paranoid about taking steroids,hearing stories about putting on excessive weight by its consumption.But no such condition occured.I still weigh just the same.After 2 months I continued with Hydroxychloroquin,introduced to Methotrexate(very low dose) and pain killers.A month later I almost stopped taking pain killers.The swelling in my wrists reduced.Today I’m still under Hqn and Mxt and the pain and swelling in my wrists have subsided.I don’t take pain killers any more.Regular medication and the right kind of diet is doing wonders for me with no side effects at all.I wish I had been sensible enough to have started this treatment 4 yrs back instead of unnecessarily damaging my cartilage.Like they say it’s better late than never.

    Like

    • You did the right thing, Shuvra. DMARDs are the best drugs available to control RA activity. The very fact that you are doing well without steroids/ pain killer proves the point.
      There is more hype than truth about DMARD side effects. If used properly, they are the best weapon for RA.

      Like

  23. Helen says:

    Hello. I just found this post and blog today via a post on Twitter. I am happy to add my voice to the campaign for positive stories. I started Enbrel in 2003 and it did great things for me within weeks of starting it. I now take Enbrel and Methotraxate. My doctor increased my dosage of Methotraxate last Fall due to a bad flare. But things are pretty much under control for me. I won’t go so far as to say remission, although I have been in that happy state for stretches of time in the past 20 years I have lived with RA.

    Concerning reading negative thigs on the internet, I must second DCPatient who said if the tenor of the posts upsets you then stop reading them. It almost reminds me of a car wreck you see on the road. It’s upsetting but we can’t stop ourselves looking! I do understand your tendency to want to read about people’s experiences but look for thoughtful, reliable information based on facts.

    I think it’s true that people are less apt to post about their positive experiences. I know for me, I read about what others are going through and think to myself, well nobody wants to hear that I felt pretty good today! But Dr. Akerkar is right- awareness is key. Along with a positive attitude!

    And Lyn, you are an inspiration! My 74 year-old mother also has RA. I’m going to tell her about your post. I’m sure she will relate!

    Like

    • “It almost reminds me of a car wreck you see on the road. It’s upsetting but we can’t stop ourselves looking! ” you have put across the point so well, Helen…
      Positive attitude with DMARDs remains the best strategy to conquer RA.

      Like

  24. nagesh wagholikar says:

    Sir
    Can we have a list of Rhumatologists in other cities im Maharashtra ? As any one can see, you yourself may not be able treat each and every RA sufferers due to physical, time constraints and vastness of Maharashtra If we could have the list, we may be able to publish it for the benefit of RA sufferers.

    Like

  25. Rahini says:

    Hi, it’s been a year since i ra n I’m thankful to my dad for being able to provide me the best n most expensive treatment that I researched abt n discussed with my rheumy. A biologic drug called orencia that frightened me enought with all it’s side effects. But guess luck found me coz this drug is simply amazing. I had to finish a course of 6 iv infutions. N it started taking effect after the 4th one after wich I went pain-killer free. However I still take dmards n methotrexates. But yeahhh!! No pain.

    Like

  26. Nitha says:

    Hi,

    I have got my blood test done and they say i have got inflammation.Doe all inflammation leads to arthritis.

    but as for now I dont have any swelling except for pain here and there – exspecially on my foot and somethimes wrist knees, elbow and heart or chest area pains and sometimes on fingers.

    Do I have arthrits, if yes how long will be it before it goes worst and is it preventable only at inflamation stage as for now as I dont have swelling happening.

    I am emailing from London, kindly help as I am getting depressed.

    They have done ECR and want to do more test.

    Thanks,

    Regards,
    Nitha

    Like

    • Dear Nitha,

      Inflammation as per blood reports (I think you are referring to high ESR/ CRP) can have multiple causes & need not always mean arthritis. You will require definite tests like anti CCP antibody/ ANA, ultrasound of a joint to look for inflammation in the joints for a definite diagnosis.

      Even if it is arthritis, it is getting diagnosed at the best possible time. This is the earliest one can diagnose. With an early diagnosis, you should definitely do well.

      Do go ahead with the other tests as per your Rheumatologist’s advice & aim for a definite diagnosis & early treatment.

      Like

      • Nitha says:

        Thanks doctor for the reply…I have just received my blood test readings:

        ESR – 24
        IC-5.2
        MCV -78
        MCH-26.10.

        I hope you could give some light on this and Doctor is it possible to consult you from London.

        Thanks alot,

        Best Regards,
        Nitha

        Like

      • Your ESR is not that high.

        First of all, one has to be sure if there is inflammation in the joints. The same can be ascertained by examination of your joints & confirmed by a sonography of the joints. An anti CCP antibody & an ANA can give a clue to the cause of joint inflammation.

        If there is no inflammation in the joints, one needs to check vitamin d3, Vitamin b12 & thyroid levels to ascertain the cause of joint pain.

        It is extremely difficult to reach an exact diagnosis without examining you. Please consult a Rheumatologist for a definitive diagnosis & early treatment.

        Like

  27. Have you checked out RA Warrior’s blog? She is a wealth of information and reaches out to help many of those that suffer with RA.

    My mission is to raise awareness to the necessity of cervical spine x-rays for those experiencing migraine like headaches with RA. My Mom died from complications due to RA. Her cervical spine was so deteriorated that it collapsed (spinal cord syndrome.) She would have had surgery to correct the problem however, was diagnosed too late. (Many misdiagnosis) I wrote a Ebook on this topic and ninety percent will be donated to The Arthritis Foundation. The remaining ten percent will also be donated to help people. My goal is toturn something tragic into something lifesaving.

    I will you all the very best and keep you in my daily prayers. God bless!

    Like

    • Appreciate your work & enthusiasm, Carla. Cervical spine involvement & atlantoaxial joint involvement due to RA are very important issues indeed. And yes, they are commonly missed.

      Kelly has been doing a wonderful job. She has been the torch bearer in this RA awareness campaign. Let us all join hands to raise awareness about RA & help RAers achieve conquest over their arthritis.

      Like

  28. Nitha says:

    Dear Doctor,

    I need your advice. Last time my ESR was 24 now they have done my blood test again on 28th March again for HLA-B27 tissuse test and the result came as:

    AP 160
    MCV 79 OR 73
    ESR 30

    After this test I have not heard anything from the doctor.On 28th March when I had done for the blood test doctor advice me to take one inflammatory tablet and to protect from stomach ulcer.

    Now my problem is I am not getting proper stools and I have to go forcefully and I have blood coming – its going on for two weeks now and now when I urine I feel something being pulling from inside. I at times getting pain in side of stomach

    And my eyes are burning and at times paining – I got my eye check-up done and though my eye pressure is perfect but they are saying I am putting too much pressure on my eyes and they have advice me to wear specs just for reading or on computer.

    Third thing I always have mild pain on the end of my neck and when I get up in the morning I have slight pain and I am getting pain on my back too. There is always a sound on the neck coming when I try to do some excerise

    Fourth thing I at times have a beat or pain on my left side of my brain or head..and at times mild headache and I always have chest pain coming and left arm paining.

    And due to the medicine I am already getting mouth ulcers and it is always my left side paining for me – left shoulder , left knees, or left foot – though they not constant but they are on and off.

    I am not sure is this because of the medicine or because I have some other health problems coming, during my first test doctor said my Rheumo-arthritis test was negative and does why second test he did HLA-B27 tissuse test and if there was some problem he could call me.

    Since the doctor has not yet confirmed if I have arthritis or not – I want to know if I have some other problem – like kidney or any problem. I am getting depressed and I want to know if you can help me in any way or you anytime coming to London.

    Please help me.

    Thanks a lot,

    Best Regards,
    Nita

    Like

  29. Dana says:

    Doctor Akerkar,

    Thanks for linking back to this post. I am one who can speak of *relatively* positive experiences with RA. At first I found myself shying away from some of the information on the internet, because it is scary to see how bad this disease can get. However, I’ve come to realize that my story is important to share, too, to hopefully bring some hope to the RA community — particularly for the newly diagnosed. I was diagnosed with RA 7 years ago, when I was 19 years old. My symptoms spread pretty quickly throughout my body, but I was fortunate to have doctors who took this disease very seriously and strongly believed in early aggressive treatment. I was quickly put on methotrexate, and began to see major improvement after a couple tweaks of the dosage. I had gone from being a perfectly healthy college student, to walking (slowly) with a limp and losing sleep over pain, back to living a normal life. About 3 1/2 years ago, I switched to Enbrel, which I think has worked even better than the methotrexate. Sure, I have “bad” days, but they’re not so bad. And most days, my RA does not stop me from doing whatever it is I want to do — be it gardening, cooking, or even backpacking! I attribute much of the success in my treatment to the fact that I was started on DMARDs almost immediately after diagnosis, before the disease had a chance to do much destruction. I know there are some that are not responsive to these medicines — but the fact that some are should give hope!

    Like

    • Thanks Dana,

      There is a lot of negative information about RA On the net; a lot of it from personal experiences of RAers. It is definitely scary for the newly diagnosed. However, everyone is not that unlucky. Most of the RAers do well with DMARDs/ biologics.

      More & more RAers should come forward & help those who are not doing all that well.

      Thanks for sharing your positive story. I’m sure it would help someone with bad RA achieve conquest over his/ her RA.

      Like

      • Dana says:

        I think it’s definitely important to paint a well-rounded picture of RA. I do appreciate all sorts of stories, because it has opened my eyes to the seriousness of the disease and encourages me to take my health seriously. It’s good to know that there are options in treatment, and good to know that not all RA-ers respond the same. My hope is that future research will focus more specifically on the different manifestations of the disease and be able to provide this kind of relief for all patients.

        Like

  30. Dear Sara – and everyone – I am a voice that has become more quiet on twitter (@RAinPA) and on my blog lately. Why? Because I am feeling so fabulous! I almost feel guilty going on Twitter … So am especially glad for this opportunity to say that my meds (and all the adjunct modalities I also incorporate) are working. I’m on plaqenil, methotrexate and Humira. I only take NSAIDs as needed. Other things that support the meds are nutritional awareness, bodywork, acupuncture and energy work.

    Just so you know I still have setbacks … I am currently fighting off cellulitis in one of my toes. The immunosuppresants make us more vulnerable to infection.

    But would I go back to the exhaustion & pain? No chance!

    Like

  31. Anil Joshi says:

    I am 40 years old. I am suffering from R.A. since 1999, that time I was just 29. Initially I used to take ayurveda’s treatment. Since 1999 to till I started treatment of Dr Akerkar there was no remarkable release to my diease. But one of my relative told me about treatment of Dr. Akerkar. Since November 2009 I am under treatment of Dr.Akerkar. After the very first month I felt very painless & energyfull. I could start my routine very smoothly. Now a days after the treatment of 1 & 1/2 year I have forgotten about the arthritis. Initial doses of my medicines are now a days are curtailed equal to nothing. Tablet H.C.Q.S., FOLITRAX, & FOLVITE gave me rebirth. So there is nothing to worries about the rheumatism. Better treatment,followup,awareness & strong willpower con conquer over the disease.

    ANIL JOSHI

    Like

  32. Mahalakshmi Ganesh says:

    Here I was,a lady of 40,completely gungho about working in a big MNC,earning very well and being in the best of spirits always.I am a very positive person,extremely independent at work as well as home.I would do the cleaning of the house myself..I like it that way.I would clean fans,walls,toilets myself,wash our clothes myself..not at all dependant on any external help.In Oct 2009,i had terrible pain in the joints,and suddenly I just could not walk.I suffered from spondilttis duirng the same period and I arttributed the pain to this.Went to my family doc,who said this was Vadh.I went to a ortho for treatment,was on pain killers for a whie..but I could see that I was not happy since,the pain kept occuring whenever I stopped the medicines.Slowly my trust in that doc was gone and I started checking on these pains on the internet.My symptons told me it was RA.I was shattered since I have seen my parents in pink of health even in their 70’s and I always had thought
    I was fit.I dont eat outside food and I was very much on controlled diet.How could this happen to me?I have never been afflicted by any major disease and this was a bolt from the blue.How do i lead the rest of my life if I could not walk or I could not do my work independently?Everyday night,I useed to apply loads of Volini,so that my finfgers would be ok in the morning.But whenever I used to get up in the morning,I was stiff all over.what used to take me 10 mins now would take me 1 hr to do.How do I continue on the job?My confidence took a beating.I cried everyday due to the pain.and I did not know what to do.Checked on Net again and then finally met Dr.Akerkar.His medicines have worked magic on me.I know this cannot be cured but now with proper medicines,I am my old self.My confidendce is back,of course,there are times when I wish away the medicines,but life is like that.Accept it and work towards solutions.Be positive,lead your normal life,but do have regular checkups…we can overcome RA by being ourselves and not be grounded by it.

    Like

    • Thanks for sharing your story, Mrs. Mahalakshmi.

      DMARDs with positive attitude remains the best recipe for conquest over RA. Your positive story should help many others who are battling rheumatoid arthritis.

      Like

  33. surabhi vaidya says:

    hi,
    I am surabhi. I was diagnosed with RA in December 2007 (I was 37 years then). Prior to the final diagnosis I suffered a lot due to severity of RA. Being an ayurved physician myself and having a strong maternal history of RA I was worried about what I would have to face in future. Earlier I had never taken any allopathy medicines and all of a sudden I started suffering from RA symptoms like severe morning stiffness involving almost all major joints. Getting out of the bed was a nightmere for me, on the top of that I was reluctant to take modern medicines. but RA was taking toll on my quality of life, I had to give up the job and being at home for the whole day and suffering such pain was a real punishment for me. I never wanted to spend my rest of life like my aunts spent due to RA. then I decided to see a rheumatologist and start the treatment. I met Dr. Akerkar as a well known rheumatologist in Thane, Mumbai area. He explained me about the disease and the treatments in a very detailed manner, he very patinetly answered my all the queries regarding methotrexate. In 2007 I had to take methotrexate 15 mg im injection once in a week and to my great surprise I started recovering within just 15 days. I was more than happy. my recovery graph was ascending where as methotrexate was descending, I started enjoying life again. I joined an mnc and could persue my dream of higher education. in the span of two years I could do my mba in clinical research. today I am very happy, leading a very normal life, I enjoy swimming, cycling, job etc. and yes, today I am taking methotrexate 7.5mg once in a week. No doubt Methotrexate has side effects, but its benefits outweigh the side effects associted to it, after all quality of life is important to everyone.
    I always wanted to share this experience with other RA patients. Thanks to this platform and many thanks to Dr. Akerkar.

    Like

  34. Raghuvir K Trifale says:

    Dear Surabhi,Thanks for narrating your experience.I am very happy that you have recovered and free from nightmare.I wish you a very healthy and happy life.
    My daughter had arthritis problem and with the initial treatment from Dr.Akerkar she is almost out of problem now.
    Thanks once again for sharing your experience.

    Like

  35. Nitha says:

    Dear Dr.Akerkar,

    I want to know your view on this treatment called – “anitbiotic therapy” started by Dr.Brown in USA and they have NGO foundation called “Road Back Foundation”.

    Thank you,

    Best Regards,
    Nitha

    Like

  36. Vickik4 says:

    Thank you for your positive & informative messages. I am recently diagnosed with RA & will be starting methotrexate next week. I was getting so worried with all the negative things I was reading on the Internet – then I discovered your website/blog & http://www.rawarrior.com and feel soooo much better about the Rx plan and my future ability to manage this illness & flare ups. I will try to do my part to stay positive & share my positive message with others.
    Thank you Dr Akerkar!!

    Like

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