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  1. #11
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    Hi Hunniebun!!

    Nice to Meet you Tanya!!!!
    Just as Rob stated it is trouble for those still 'waiting'....not knowing...just let us all be grateful that your new Rheumy informed you that it would be too dangerous for you to not be on anything to 'fight' the inflammation..etc, as your blood work and your body shows there is clearly something not 'right'....and I am sorry you have reached out before to little response...but I think you have found a home..a safe place to let it out...doesn't matter right now if it is RA or Lupus...you need support...right now..as you adjust and wait...

    My stomach is not too kin on meds either....and I have been on so many different anti-nausea meds and I still have the nausea and vomiting problem..I hope you find some relief*sigh*

    I am new as well..and I hope you can read the SpoonTheory..as it will assist you in explaining all this to non-chronically ill 'world'....

    Welcome,
    Nic

  2. #12
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    Welcome Hunniebun;
    I want to apologize for being so late in joining this conversation and in offering you my welcome. However, as usual, other members here have shown you how caring and informative the people are here and have made sure that you were welcomed. We want you to know that you are never alone when you are here with us. Also, you've been given some excellent advice and I am glad that you found the Spoon Theory useful. So many of us have used it in an effort to explain our daily fight with this disease.
    I am glad that you've found a doctor who understands the importance of treatment with this disease because it is a progressive disease and can be dangerous if left untreated. I hope that the Prednisone continues to work for you. Since you are unable to take the Plaquenil, there are other medications that you and your doctor can consider along with the Prednisone in order to give you more relief from your symptoms. One alternative to Plaquenil is a slightly different anti malarial called Quinacrine. For lupus, the dosage for adults is usually around 100 milligrams (mg) once a day for several months, after this time, the dose may be decreased depending upon the response of your symptoms.
    Also, if your doctor does not want to use Quinacrine, there are other classes of drugs, also called DMARDS (disease modifying anti-rheumatic drugs) that are also used. These include Methotrexate, Imuran, and Cellcept. You may want to ask your doctor about these alternatives that can be used in conjunction with the Prednisone. Some of these drugs also may be used to help you reduce the amount of Prednisone that you are taking.
    Many of us have had to work through issues with the help of a therapist and I am glad to hear that you are doing the same. I always advocate that it is just as important for us to take care of our emotional health as it is for us to take care of our physical health because one cannot heal without the other.
    As everyone here has mentioned (and as you've seen) you will never find that you get no responses here. Everyone here wants to help and there will always be someone here for you when you need us.
    Again..let me welcome you to our family and send you a very warm welcoming hug!

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

  3. #13
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    Yeah we talked about Methotrexate but my rheum told me he would greatly prefer that I do not go on that drug at all if I don't have to. I have such a big problem with swallowing pills, I'd much rather have injection treatment then having to take all these pills, which is why I'm glad that my prednisone dosage is very small right now.
    I am hoping my sister can come with me for this next visit to the Rheum so she can start learning and understanding what's going on with me, as she's very worried all the time, and other times she think's I'm fine so I know she's not sure about any of this.
    I really...Really hate pills haha, but seems like I don't have much of a choice!

    Thanks everybody for all the replies, I really appreciate it.

  4. #14
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    You are most welcome. I understand your hatred of swallowing pills. I was once that way before I was diagnosed with this disease. Since then, I've had to overcome that in order to ensure that my health was being taken care of. It was not easy, believe me! My hubby had to throw pills down my throat (I know now that that was a dangerous thing to do).
    I can now take a handful of pills at one time. I do it this way in my effort to reduce the number of times that I have to swallow pills (LOL).
    In any case, I do hope that you are able to find a regimen that works for you. If your doctor does not want you to take Methotrexate, there are alternatives to that drug also.
    I wish you the very best!

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

  5. #15
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    Hi Hunniebun.

    My name is Sarah.im 25 yrs old. I was just recently diagnosed with SLE like 3 weeks ago... I havnt taken the meds yet. Im freaked out about the side affects. Like u, im a little petiete girl. 5'5 weighing 110lbs. Im so afraid of the side effects. It sounds like u have tried the drugs, and have seen the results. I completly understand how you are feeling alone and depressed. Its so hard to pretend all the time that u are feeling ok. I pretty much am in constant pain everyday. When people ask me how I feel, i just say "fine" ..im sure the people I work with dont know how much pain I;m actually in. My fingers are swollen and stuck shut in the a.m., my knees and ankles and toes are also my affected areas. It sucks to be honest with you, dosnt it?! on top of feeling like crap, I also have sooooo much anxiety that goes along with it, and recently been having panic attacks. lol...im pretty much a wreck!!! Im new to this whole forum thing, but I would love to chat if youd like to.
    TTYS Sarah

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    Wow Sarah, you sound just like me...What kind of meds were you perscribed? I have been on Prednisone for over a month now and it's not that bad so far, and it actually works. I don't feel anywhere close to perfect but I feel better being on this medication than being on nothing at all, it really does help you. I know how hard it is not to freak out, a lot of the time I still do it but I do my best to stay calm. I am new to this board as well and there are a lot of VERY nice people on here that can help you, and will listen to anything you have to say, its a very supportive place. Maybe seeing a therapist might help you relax more? I see one weekly and it does a lot of good. I can also relate so well to the anxiety, I am full of it.

    I'd definitely like to chat, maybe we can exchange emails?

    Hunnie

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