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Thread: GP says I may need to add something to my medications...

  1. #21
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    Quote Originally Posted by giggle View Post
    btw Im not a small girl, Im 5ft 9inches tall and while Im a size 10-12, Im built like an amazon. Im 76kgs. Im about the weight of your average sized guy and about the same height too.
    Giggle i'm laughing at this mate, as if your like me your tall but small framed i'm 5ft 8" tall, size 10 and weigh in at 65kg.

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    Quote Originally Posted by giggle View Post
    btw Im not a small girl, Im 5ft 9inches tall and while Im a size 10-12, Im built like an amazon. Im 76kgs. Im about the weight of your average sized guy and about the same height too.
    Jealous....lol I hate being small =(
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  3. #23
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    Ritz,

    I wish i was'nt so tall mate and smaller at least you ah got a struggle with jeans and trouser legs...i have to hunt the shops to get a 34"leg as it's mainly 32's here.

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    Hi,

    I was on 400mg of plaquenil for over a year and it did nothing for me. After trying many other drugs that also did nothing, my Rheumy started me on an extremely high dose of Methylprednisolone and Azathioprine. It's a new way to take it though. She said it's "pulsing the dose". I go to the chemo unit of our local hospital and the methylprednisolone is given intravenously. The treatment takes just over an hour. It's a six month plan--for the first three months, I go three days (in a row) a month, for the last three months, I go one day a month. I just finished the second month (or sixth treatment). It definitely has been working. Before I started this treatment I was taking 1000mg (yes that is three zeros) of Advil every two hours. And when it got really bad, I would add in naproxen, T3's and anything else that was in the house. It was ridiculous, I was eating pain killers like smarties! Since starting the treatment, I haven't taken a single pain killer. My lupus pain is very low right now but the side effects of the steriod is hard. It can make me really nauseous and of course the weight gain really sucks. At least I haven't gone crazy yet, knock on wood (this is me knocking on my head--ha ha). I'm hoping that I can withstand the rest of the treatments and that it does what my Rheumy wants--shocking my lupus into remission. As it stands so far, it's looking good. Keeping my fingers crossed.

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    Oops, forgot to add that I take the Azathioprine in pill form every day.

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    Lol I know what you mean terry!! I cant find pants that go down to my ankles... I feel like an elderly lady with my hem well above my ankle. Its supposed to cover the top of your shoe. My daughter is the same... only much much worse because she is skinny. She is in size three pants, but she is six and on the taller side... so normal pants only go half way down her calf : (

    But yeah, I wouldnt call myself small frame... Im all arms and legs and boobs!! LOL! Seriously... I would give anything to be small!!

    Canadiangirl... plaquenil definitely takes the edge off if I have over 200mg... but it certainly doesnt significantly improve my quality of life. Its REALLY hard for me to predict or convey exactly how sick I am... because I dont feel like I am as sick as some other people look LOL It wouldnt be until an organ started failing that I would know and I would likely be near death for it to make me notice. I certainly never get regular testing to make sure I am not terribly ill. Even when I was in ICU, it was impossible for me to think of myself as sick, let alone dying! Im just going to have to admit to myself and demand that I am regularly monitored.

    Mari... I was told the normal dose for malaria is actually significantly less. They apparently normally take one tablet a week. But the same doctors saw nothing wrong with me taking 400mg of plaquenil either so who knows lol : )

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    I decided to look up plaquenil dosing information...

    "Plaquenil Dosing for Lupus
    For treating lupus in adults, the recommended starting Plaquenil dosage is 400 mg once or twice a day. After a while, your healthcare provider may recommend a lower dosage (such as 200 mg once daily). The higher the long-term dosage, the more likely that serious Plaquenil side effects (especially eye damage) may occur.

    Plaquenil Dosing for Rheumatoid Arthritis
    The recommended starting Plaquenil dose for rheumatoid arthritis treatment is 400 to 600 mg daily. In some people, the starting dose may need to be temporarily reduced (for a week or so) if bothersome side effects occur. After a good response is obtained (usually four to six weeks), your healthcare provider will recommend that your dose be reduced to 200 to 400 mg daily. The higher the long-term dosage, the more likely that serious side effects (especially eye damage) may occur."

    Another site

    "Lupus erythematosus

    The adult starting dose is 400 milligrams one to two times daily, for several weeks or months, depending on the reaction. This may be reduced to 200 from 400 milligrams per day for maintenance. With systemic lupus, it is especially useful in relieving skin inflammation, hair loss, oral sores, fatigue and joint pain as well as preventing relapse.

    Rheumatoid arthritis

    The adult starting dose is 400 to 600 milligrams per day with food or milk; with improvement (between four to twelve weeks) the maintenance dose is 200 to 400 milligrams daily. Hydroxychloroquine has not been proven safe for the treatment of juvenile arthritis."

    And ironically... a related thread from 2008 from this forum http://forum.wehavelupus.com/showthr...enil-Dosage...

    : )

    Strangely... my rheumy didn't put me on a high starting dose either. He suggested I take a lower dose and increase it if need be. I am on 400mg for maintenance.

  9. #28
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    Quote Originally Posted by CanadianGal View Post
    Hi,

    I was on 400mg of plaquenil for over a year and it did nothing for me. After trying many other drugs that also did nothing, my Rheumy started me on an extremely high dose of Methylprednisolone and Azathioprine. It's a new way to take it though. She said it's "pulsing the dose". I go to the chemo unit of our local hospital and the methylprednisolone is given intravenously. The treatment takes just over an hour. It's a six month plan--for the first three months, I go three days (in a row) a month, for the last three months, I go one day a month. I just finished the second month (or sixth treatment). It definitely has been working. Before I started this treatment I was taking 1000mg (yes that is three zeros) of Advil every two hours. And when it got really bad, I would add in naproxen, T3's and anything else that was in the house. It was ridiculous, I was eating pain killers like smarties! Since starting the treatment, I haven't taken a single pain killer. My lupus pain is very low right now but the side effects of the steriod is hard. It can make me really nauseous and of course the weight gain really sucks. At least I haven't gone crazy yet, knock on wood (this is me knocking on my head--ha ha). I'm hoping that I can withstand the rest of the treatments and that it does what my Rheumy wants--shocking my lupus into remission. As it stands so far, it's looking good. Keeping my fingers crossed.
    I really hope all this works for you, i'm on plaquenil also and take 200mg daily, i can't go no higher with the drug because of my other meds i take but i really hope it put the Lupus into remission for you at least.

    Terry xxx

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