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My Quest for the Expert Solution/Advice

May 21, 2012

When I was first put on the HIV drug combo stamvudine (d4t, Zerit) + lamivudine (3TC, Epivir) + nevirapine (Viramune), I had an initial fear of how it would react on my body. Will one of my organs fail? Will I look bit weighty with fats exposing out where it shouldn’t be? Or would I have sunken cheeks, dark circles around my eyes, a very tired face and too lazy to move? How will it impact my day-to-day life? What should I do/eat/take care to maintain myself well so that it don’t make my schedule go haywire? I had all those questions in my mind, questions that I was seeking answers to, questions that doctors simply reply to as ” Don’t think much, just take the meds, eat healthy, exercise regularly and you’ll be fine”. Thou I would find most of my answers in Google, it gave me the scariest picture that I could ever imagine.

Without a proper knowledge, guidance and assurance, I lived wholly under fear yet I didnt let that fear affect my life. When I was first detected in 2006 with my CD4 of 400 something and was put on lamivudine + stavudine + nevaripine (yes, I was hooked on meds when my CD4 was 400, not below 200), everything was fine–OR as per my ignorance–it looked fine. When later from a fellow friend and survivor I was told that the tingling sensation I feel on my hands and feet are the signs of Neuropathy. When I googled that, I was shocked to read what is neuropathy, and how it can affect a person. In my 5 years of taking those meds, first three years were fine, then the next two years my daily schedules were getting affected due to the tingling sensation on my hands and feet to which I ignored thinking that it’s normal and nothing! At times, when I wanted to get up, my feet would fail to respond and would become kind of numb to which I attribute to sitting or lying for a long time. How was I suppose to know that my body is reacting to neuropathological disorder? Sometimes, while cleaning utensils, most the glasses and crockeries would slip out of my hand and break and I blamed it on my clumsiness. But no, it was a neuropathological disorder!! The more I knew about neuropathy, the more scared I became that without wasting any more time, I went to my doctor and demanded to have my meds changed instead. What really frightened me was to discover that Stamvudine figured in the list of “banned” substances. Sometimes, with the effect of google and the misguided information really plays havoc with your mind and hence I demanded my doc that am opting out of Stamvudine and no amount of reasoning would make me change my mind.

Hence starting Jan 2012 I was put on zidovudine (AZT, Retrovir), breaking off from stamvudine after 6 long years. I was apprehensive regarding zidovudine  as well and gave my doc a “know-all” look as if demanding to know more about the side effects of the medicines rather than keeping my mind shut and blindly trusting him like before. I was told that zidovudine may result in “Anemia” but then I will be monitored every month and put on multi-vitamins/ multi-minerals tablets so that even being “slight” anemic is nothing to worry about. Then he also said that Zido like stamvudine, stores fats on waist and neck but since I was responding well to Stam (except for the tingling sensation) I would do fine with zidovudine. Somewhere, I was having butterflies in my stomach, feeling uneasy taking zidovudine (after all, many thanks to google and the effect it did on my mind) but still I had no option but to try it. What followed after was satisfactory result. From Jan to March I was in pink of health. The side effect started showing on mid-March when I felt too tired to even move, drowsiness even after having a good 8-10 hours of sleep, dizziness. The blood test resulted in “Low Haemoglobin” resulting in me being Anemic. i did not press the panic button as this time I was prepared for it before hand as I knew it is bound to happen. To control that deficiency, I wa told to be on high-protein low carb food.

From mid March to May, I slowly noticed my body contours changing until it became much visible on the mirror itself! A slight double-chin, a bit of fats on my arms and thighs. Plus an increase in a belt-size!! Yikes!!!!! What blew me off and sounded the alarm bell was when in these 4 months time after taking my new dosage combination, my 30 inch waist increased to 32, and now 34, threatening to expand further. Most of my clothes were not fitting properly and I have to get back to my pregnancy dresses!! Or maxis!! Or long loose flowing gowns and frocks!! Again I made a trip to my doctor requesting hysterically that zidovudine is spoiling my figure, bulging my tummy. And his reply was ” eat healthy, exercise regulary and u’ll be fine”!! Arrrrrrrggggghhhhhhh!!! I have heard of that before too. I was not looking for comfort and assurance, I was looking for answers and solutions. I was looking for advice, a transparency in what the medicines can do to your body and how I can balance my health with toxic meds.

Thus began my quest for a doctor who understand the fear in patient’s mind, who understand that the patient needs knowledge rather than remaining in ignorance, gulping down the life-saving bomb (pills) in the system (body). I would rather that the doc-patient relationship should be such that he/she should not be falsely reassured but be PREPARED for the next side-effect. Such relationship is not very common here in India. People consider doctors to be second, next to God. To me, a doctor is just a “doctor” in profession, even thou they can save life, but being God-Conscious, I believe that thou doctor’s duty is to save lives, a life lie in the hands of God. Zidovudine did me more harm than good. I was nearly terminated from my job. Most of the days, I have to forcibly drag my body out of the bed even though I had slept longer than usual. At the most, my feet would swell and pain. Dizziness in public places was causing me more embarrassment than agony. But the “forever increasing” waistline was the more cause of my concern as I was well aware of obesity resulting in more problems. Hence I am determined to change my doctor of 6 years coz in the end of the day its MY body that I am dealing with, not THEIR medicines.

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12 Comments
  1. Hakie permalink
    May 25, 2012 2:39 am

    u’v inspired me. I was living in stigma but i just want a person to touch my soul and comfort me with such words. I will be glad.
    harona10@yahoo.com

    • mumbaiyyagal permalink
      May 29, 2012 8:06 pm

      Hello Hakie , u are not alone. There are many people like us also trying to reach out, to love and to be loved! Feel free to get in touch with them and see the wonderful bond that they create. Should u need to get in touch with me, am in Facebook. U can find me on mumbaiyyagal@yahoo.in (facebook id) (yahoo email id). I will be happy to talk to u and together we can brighten other’s lives too 🙂

  2. May 26, 2012 3:22 pm

    Oh my Jo! I wish I could tell you that any change of meds would avoide these side effects! but they don’t :/ these are the cards that we were dealt with..I myself took trizivir for 10 years it had( Azt) in it..I never became anemic ..nothing. only reason I changed it was because it was enlarging my red blood cells. you see doctors always look at Vl and Cd4 counts..being proactive and talking to long term survivors will teach you much more..believe me!

    learn to red lab works..not only the obvious. ask for different tests including vitamin d.

    learn to know your liver and kidney function level etc..

    very important for me..now that we are taking Hiv medicine ( no matter what combo it’s toxic)

    try to take natural supplements..i have Neuropathy also ( mild,not as bad as some people that are in a wheel chair ) . do acupuncture ! massage therapy to stimulate the nerves and coenzyme q10 is wonderful for Mitochondria Toxicity! ( Arv’s cause damage this ..which is one of the biggest energy producers )

    I wish you a speedy recovery my friend and love you

    Maria

    • mumbaiyyagal permalink
      May 29, 2012 7:59 pm

      @Maria Hiv Mejia – Glad to see ur reply. Yes u are right, I have to learn to read the counts, RBC, WBC and all that. I have never done acupuncture or massage (aaaaahhhhhh, thinking abt that now!!!) but I do exercise at times. But when the days become hectic and jobs demanding, I had dropped out. But I am well aware of the benefits in Exercise and Nutrition. Coenzymes Q 10!!!! I had forgotten all about it until now!! I will check if the chemists here in India has this….

      xoxo

      • June 4, 2012 3:33 pm

        hi! another very good option is acupressure. I don’t know anyone in Mumbai but I know a very good doctor in Pune who’s treated a friend of mine with neurological conditions. If you’re interested, do get in touch with me here or facebook or twitter on priyankabansal_87@yahoo.co.in
        You seem strong, determined and positive and it’s inspiring to read your blogs! All the best and I sincerely hope for a continued happy life for you! 🙂

  3. L.J. permalink
    June 4, 2012 2:54 pm

    Hi Mumbaiyyagal

    I’m with you 100% re worries about the drug’s toxicity. For what it’s worth, I am under the understanding that it’s mainly the nucleosides which cause mitochondrial toxicity and neuropathy. I stood firm and refused to start meds until my consultant agreed to prescribe two protease inhibitors (duranavir boosted by norvir) and an integrase inhibitor (raltegravir). I’ve been on them for 6 months, had itchy skin and stiff knees for a while, this has stopped now. I have put on a bit of weight and I’d hate for that to continue, I’m being mindful…… It may be worth while talking about this option to your Doc, new drugs so no long term studies on side effects, it’s all risky! They are more expensive too which may be an issue.
    Good luck
    L.J. x

  4. mumbaiyyagal permalink
    June 5, 2012 1:52 pm

    @ L.J : It is nice when one knows a lot about medicines and how it works. I have heard of Protease and Integrate inhibitors but I never thought of understanding these. But now that u have mentioned its role in a simpler term, I think I should get back to basics and start understanding my medicines. Thank u for showing me the way……

  5. L.J. permalink
    June 5, 2012 4:47 pm

    Hey may your journey be a good one! It might be that this regime does not suit you, or that the meds are not available in India. Check it out..you could possibly to get them online with a prescription – you can in the UK. Unfortunately they also have side effects and health risks. Also I need to point out that it’s relatively new regime and the medics are a little apprehensive that they will continue to work efficiently. The preferred approach is mixing drugs from 3 different groups (rather than 2) to minimize the chance of drug resistance, at which point the whole treatment would collapse.
    Thanks for all you have written, and showing your lovely smile, you’re an inspiration, so optimistic and beautiful in spite of all that you have endured, like a lily blooming from the murky depths of a lake.
    L.J. x

  6. mumbaiyyagal permalink
    June 6, 2012 11:33 pm

    Hey L.J…….thanks a lot for ur wishes 🙂
    And yes, regarding medicines, I will have to check it out…..I also need to know a lot about medicines!!!

  7. Evon Warui permalink
    June 7, 2012 6:17 am

    Hi. Thank you for the insight. am newly diagonised will be celebrating my 1 month annivesary on 9th of June and am coming out of the denial and getting ready to look for medical help on managing my new status. this blog has been very insightful on why was to go and how best to dialogue with my soon to be new doctor in arriving at a sustainble course of treatment. Thank you all soo omuch for sharing, it has given me strength to face the road ahead.

    • mumbaiyyagal permalink
      June 8, 2012 4:02 pm

      Hi Evon Warui….First of all “happy month anniversary” 🙂 🙂 🙂
      There is a book which you may like that I had come across thru a friend : Good Doctors, Good Patients-Partners in HIV Treatment by Judith Rabkins, Robert Remien and Christopher Wilson. It may help.

  8. mumbaiyyagal permalink
    June 8, 2012 3:57 pm

    @ Priyanka Bansal : Thaaaaaaanks. I have sent you a request in Facebook as am unable to message u there (the message option is not available on ur page, maybe due to the privacy settings that is set)….If u are comfortable, do accept my request. I will be honoured.

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