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Thread: Sis has Lupus

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    Unhappy Sis has Lupus

    Hey… my sister has just been diagnosed with lupus…really freaked out, the doc has started steroids & says she will taper it or stop it in a month & then shift to immunosuppressants.
    She had been getting joint pains & her platelet count had gone down to 35,000.
    Her ANA & DSDNA have both come positive.
    Have been reading about S.E.L online & everything reads & sounds like its only 10-15yrs max. My sister is only 24…I realy don’t know what to do.
    Are there any support groups here in Mumbai India.

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    hi Ajoy,

    first of all, i don't believe you have to worry about the 10-15 years duration that you read about. I and many others have been living with lupus for many many years, and we are still here to kick this disease around a bit.

    I am so sorry about your sister's diagnosis. Lupus is not an easy disease to live with, but she can live with it. Did her dr. also start her on Plaquenil along with the steroids? Plaquenil takes several months to work its best, but it helps with several of the symptoms. Many of us have taken steroids, especially when in a really bad flare. I also take immunesuppresent medication (methotrexate), and that also helps. The side effects of theses medications is very frightening, but they truly help us deal with pain, fatigue, etc.

    Welcome to our family, your sister is very lucky to have you in her corner. This is the place where you can find answers to questions, and we will help you and your sister learn how to maximize her new life. If she would like to join, we will be here to help her.

    Sounds like she has a great dr., and that is a major element in living with lupus.
    Phyllis

    share a smile today

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Ajoy,

    Welcome to our group. I am sorry to hear of your sister's recent diagnosis. I was diagnosed with SLE in 2004. It can be frightening and overwhelming, but it will get better for your sister. There will be some serious adjustments to be made, but things will get better with time. I live on the other side of the world from Mumbai, India. I live in the state of Maine in the U.S., so I have no information on support groups in your area. However, we have members from around the world here, so I am hoping a member here who lives in that region may read this post, and have an answer for you. Welcome, and make yourself at home here.

    Rob
    Your Hopefully Humble Mod...

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    Hi Ajoy,
    Welcome to WHL. Like Rob, I'm in the U.S., but I'm on the west coast, in California.
    First of all, the lupus diagnosis is not a death sentence. As Rob mentioned, many folks in this group have lived with it for many, many years. I'm sure that my mother and aunt had it, although never diagnosed, and they both lived into their 80's.
    Keep learning all you can and supporting your sister. She will appreciate it. Also, invite her to join us here at WHL. We'll be glad to have you both as part of our "family".
    Hugs,
    Marla

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello and Welcome to our family.

    Let me tell you that I've been living with Lupus for 24 years and am no where near the end. The 10-15 years is an average of those people interviewed. Rarely do they interview people who have lived with this disease for more than 15 years. So, it is not a true gauge of the possible lifespan of a person with Lupus. It is quite possible to pass away from old age while having this disease. Please do not take this number literally.
    I was unable to locate a Lupus Foundation in Mumbai. However, there was a study on Lupus in India conducted by the faculty of Medicine, Kuwait University, Kuwait. Perhaps you can contact the University to request that they refer you to a Lupus Foundation and/or support group near you. Here is some contact information to get you started:
    Research Administration

    Presidential Complex, Building No. 119
    2nd Floor, Khaldiya Campus
    Kuwait University
    Mailing Address: P.O. Box 5969, Safat – 13060 KUWAIT
    Telephone: (965) 2498 5264, (965) 2498 5208
    Help Desk: (965) 2498 5264, (965) 2498 5208
    Fax: (965) 2484 6147
    Email: ovpr.ra@ku.edu.kw

    I hope this helps you. Please let me know if you need anything further!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Quote Originally Posted by mountaindreamer View Post
    hi Ajoy,

    first of all, i don't believe you have to worry about the 10-15 years duration that you read about. I and many others have been living with lupus for many many years, and we are still here to kick this disease around a bit.

    I am so sorry about your sister's diagnosis. Lupus is not an easy disease to live with, but she can live with it. Did her dr. also start her on Plaquenil along with the steroids? Plaquenil takes several months to work its best, but it helps with several of the symptoms. Many of us have taken steroids, especially when in a really bad flare. I also take immunesuppresent medication (methotrexate), and that also helps. The side effects of theses medications is very frightening, but they truly help us deal with pain, fatigue, etc.

    Welcome to our family, your sister is very lucky to have you in her corner. This is the place where you can find answers to questions, and we will help you and your sister learn how to maximize her new life. If she would like to join, we will be here to help her.

    Sounds like she has a great dr., and that is a major element in living with lupus.


    Thanks for the reply...i dont know what tabs you are talkin about but i can list what she has been prescribed. The names might be unfamiliar so i will give u the chemical composition too as i guess the drugs will be the generic version being sold in india.
    1) Steroid - Wysolone 20mg (Prednisolone) Morn - Even
    2) H.C.Q 200mg ( Hydroxychloroquinesulphate) Even
    3) Pantacid 40mg (Antacid) Morn - Even
    4) Storvas 10mg (Atorvastation Calcium) Even
    5) Triple A Cal (Calcium With Calcitrial & Zinc) Morn

    I have no idea what immunesuppresent the doc will prescribe but she says she will start them after a month.

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    Quote Originally Posted by Saysusie View Post
    Hello and Welcome to our family.

    Let me tell you that I've been living with Lupus for 24 years and am no where near the end. The 10-15 years is an average of those people interviewed. Rarely do they interview people who have lived with this disease for more than 15 years. So, it is not a true gauge of the possible lifespan of a person with Lupus. It is quite possible to pass away from old age while having this disease. Please do not take this number literally.
    I was unable to locate a Lupus Foundation in Mumbai. However, there was a study on Lupus in India conducted by the faculty of Medicine, Kuwait University, Kuwait. Perhaps you can contact the University to request that they refer you to a Lupus Foundation and/or support group near you. Here is some contact information to get you started:
    Research Administration

    Presidential Complex, Building No. 119
    2nd Floor, Khaldiya Campus
    Kuwait University
    Mailing Address: P.O. Box 5969, Safat – 13060 KUWAIT
    Telephone: (965) 2498 5264, (965) 2498 5208
    Help Desk: (965) 2498 5264, (965) 2498 5208
    Fax: (965) 2484 6147
    Email: ovpr.ra@ku.edu.kw

    I hope this helps you. Please let me know if you need anything further!

    Peace and Blessings
    Namaste
    Saysusie


    I checked with the doc also, there seems to be nosupport group in the area.. but i think my sis is takin all this very well. Gets up early now & goes for a walk & has even joined some yoga classes. Dont think its of any use but it will keep her spirits up. The meds already seem to have taken the joint pain away. Will keep u posted if i find anything.

    Thanks a lot....& keep fighting

    P.S : I have listed the names of the drugs in a previous post. I think one of them is also used for malaria, is it commonly also used for lupus ?

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    Quote Originally Posted by magistramarla View Post
    Hi Ajoy,
    Welcome to WHL. Like Rob, I'm in the U.S., but I'm on the west coast, in California.
    First of all, the lupus diagnosis is not a death sentence. As Rob mentioned, many folks in this group have lived with it for many, many years. I'm sure that my mother and aunt had it, although never diagnosed, and they both lived into their 80's.
    Keep learning all you can and supporting your sister. She will appreciate it. Also, invite her to join us here at WHL. We'll be glad to have you both as part of our "family".
    Hugs,
    Marla
    Will tell her to join too. I know genetics has a lot to do with lupus..but dont know of anyone in the family who has it.. But my moms side has a generous sprinkling of diabeties. Even my mom has been insulin dependent for more than 30yrs even before my birth. Been telling my sis that lupus is just the same..mom takes insulin & u can take some tabs, nothin to worry. Heck when they diagnosed my mom in the late seventies they were talkin 20yrs too..she is fine & kickin & in the pink of health.

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    Quote Originally Posted by rob View Post
    Hi Ajoy,

    Welcome to our group. I am sorry to hear of your sister's recent diagnosis. I was diagnosed with SLE in 2004. It can be frightening and overwhelming, but it will get better for your sister. There will be some serious adjustments to be made, but things will get better with time. I live on the other side of the world from Mumbai, India. I live in the state of Maine in the U.S., so I have no information on support groups in your area. However, we have members from around the world here, so I am hoping a member here who lives in that region may read this post, and have an answer for you. Welcome, and make yourself at home here.

    Rob
    Your Hopefully Humble Mod...
    Thanks for the reply..yup no support groups here may be she can start one.
    10 days ago, i had no idea what lupus was..except that it meant wolf in latin. Now have gone crazy reading about it in the last few days.
    She only had jpint pains & low platelets, no skin probs yet..the pain is gone & hope the blood tests for the plateles is good.
    Best of luck & thanks again

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    Quote Originally Posted by Ajoy View Post
    Will tell her to join too. Been telling my sis that lupus is just the same..mom takes insulin & u can take some tabs, nothin to worry. Heck when they diagnosed my mom in the late seventies they were talkin 20yrs too..she is fine & kickin & in the pink of health.
    Now you're talking, girl! Keep supporting your sis and be her cheering section. I was glad to see that she's exercising and keeping her spirits up. It will be good for her, and the exercise will help.
    The meds that you listed look familiar. I also take plaquenil, and it helps. It is a malaria drug, but I've read that during a war, the medics noticed that it also helped the troops who had AI disorders, so it's been prescribed ever since.
    I also take an immunosuppressant, called methotrexate, which also works for me. There are some threads here about it, so you can learn about it.
    Several of us have found that we have a vitamin D deficiency, too. That's something that your sis should be aware of, too.
    Keep up your spirits, and hers!
    Marla

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