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Thread: Going off all meds

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    Default Going off all meds

    I posted once before to this support group. My name is Kim. I am the mother of 3, work full time and was diagnosed with Lupus 5 years ago.
    I have had symptoms for 8 years. My main symptoms have been pitting edema in all of my extremities, constant headache, numbness and tingling in all extremities and bone pain.
    I finally me a rheumatologist that was able to diagnose me by looking at me and confirmed it with a blood test. I was put on Plaquenil and an NSAID and had routine visits. Things were going great once the Plaquenil started working--except for the edema which never went away.
    A little over two years ago, after having my third child, I had a bad flare and things have gotten progressively worse since then.
    My doc is now telling me that the blood tests all show that I am in remission and that I should be feeling fine, but I don't...I feel worse every day. She has actually suggested that my symptoms are in my head and recommended therapy. My brain can not imagine pitting edema or the rash that is on my face.
    Anyways, I am completely discouraged and have decided to take myself off the Plaquenil, Lisinopril and Synthroid and just see what happens when I do not take any medication at all. I have pretty much given up and feel so alone.
    Maybe I am just ready for the disease to completely take over and just fade away so that I do not have to feel this pain any more.

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    Hugs purple_butterfly

    Sorry to hear they never found a way to deal with your swelling.

    Which NSAID drug did they put you on and was it the only one they tried?

    NSAID's do not work for everyone and there are other choices. You doctor may have been careful of the drug they chose to put you on in combination with the plaquenil.

    If your doctor feels you are in remission, I'm wondering if you need to remain on medications? I'm not sure about this and it would be a good question for your doctor.

    The swelling may be a seperate issue.

    My sister has been in remission for many years, but I get the feeling that she has been extremely fortunate. I do hope it continues for her.

    She has not been on any medications for the lupus in a very very long time.

    I have edema in my legs, but not my hands or arms. I'm taking a combination of plaquenil and arthrotec75. This combination has been working very well for me.

    I will occationally get some swelling, but I just start wearing diabetic compression socks for about an hour in the morning when I first get up. This seems to help control the swelling. After a couple of days the flare subsides and I go on about my usual way.

    Do you have any soreness in your joints? Have you been checked for arthritis?
    Oh look ... a cookie

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    Hi purple butterfly,

    Sorry to hear about your dilema (sp). I too wonder if it is time for me to go sit on the mountain and see what happens. My Lupus was in remission for several years. I have been rebattling with it for the past 12 years, and am just now starting to get increased dr. involvement. Am going to specialist, getting tests done, etc. I too wonder if the meds are really worth the damage they do. Hang in there, you have 3 young children who love their mom (mine are grown now).

    Keep posting, I am sure that we will both get lots of encouragement from those who have been there.


    Share a smile today,

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    Purple butterfly, your thread saddens and worries me. You sound like you're giving up. Believe me, I understand your frustration but you must remain strong for your family. They will be lost without you, you can be certain of that. If the doctor is right, you may not need your lupus medication anyway. I wonder about stopping the synthroid, though. Isn't that for your thyroid? If I'm correct, that's not something you can stop without consequences. Why don't you start slowly, cutting back on the lupus meds (assuming your doctor agrees) until you've stopped completely and see if there's any improvement in how you feel. It may be that you need to have your thyroid medication tweaked instead, but you won't know if you stop everything at the same time.

    We know and understand that what you're feeling is NOT in your head but is very real. I hope that you find the answers you need.
    SLE, SJS, vasculitic neuropathy, Degenerative Disc Disease, Chronic Autoimmune Urticaria

    Plaquenil, Imuran

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    Hi Kim,
    I read your post here and I feel sad big time. I understand how you feel big time. I have had this rotten illness nearly all of my life and there have been many many times that I just wanted to throw in the towel, but you see when you have children you just can't do that. Think about how they would feel if you were gone. Please reconsider what you are planning to do and find a different doctor ok. Don't let this rotten disease win. I know that that is a lot easier said then done, but please do reconsider. I will have you in my prayers.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    I am so glad you posted! I am so sorry you are so sad and frustrated but you have come to the right spot! There are so many others, as you have found out, that worry and question things just as you do! They are here, we all are here to help you get through this

    I would like to share with you that I too went off of all my medication, about two years ago when I was in remission. The doctor said it was my choice and he would monitor me closely. The only joy I got out of it was feeling a bit more in control. However, that did not last. I started to get worse and the Lupus started to affect my lungs and blood pressure. For me it has been an up hill battle ever since that moment. I never realized how good I felt until I went off of the medicaion and felt what it would feel like with no medication :?

    Please, think twice about this and talk to your doctor and if you do not like what they say........go to another one until you feel you are getting the care you deserve :!:

    Hang in there and know that we are all here for you and the choices you make

    Danica
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    Hi,
    I just wanted to pop in to reiterate that stopping all of your medications may be dangerous. There are some medications that, if stopped abruptly, will cause great damage to your body. Think very carefully before you make this decision.
    Regardless of what your doctor says or what her opinions are, your symptoms are VERY REAL and they MUST be treated. It may be that some medications need to be modified, or some need to be discontinued in order to be replaced by others. Many of us have had to experiment with our meds and their doses before we were finally able to find a regimen that works for us. Be aggressive with your doctor and tell her that there are very many of us whose blood work shows little lupus activity, but we still suffer from symptoms. The blood work may show no activity BECAUSE of the medications and, if they are stopped, you can throw yourself into a very dangerous place (especially the lisonopril and synthroid).
    Never give up. There are many of us who have lived with this disease for 20+ years and have found a way to get the right medication mix, make the best lifestyle changes, and fight our way to a doctor who works with us. It is a battle, yes, but we are all here to help you fight this battle. You are not alone.

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

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    Thanks you everyone for the advice and support.
    I have been on numerouse NSAIDS. Relafen and Voltaren are just a few. They did not help much and now the nephrologist wants me off all NSAIDS because of the concern for my kidneys. There is no kidney damage currently, but they do not want to take the chance.
    I saw my GP a few weeks ago and he tested my thyroid. He adjusted my Synthroid and has tested twice. All is normal. I have remained off the Lisinopril, Demadex, and Plaquenil now for 8 days. Feel no difference. Everything still hurts and I am exhausted.
    I realize I need to fight for my kids' sake, but how much can I subject them to seeing? I have faught so hard with no resolution. How can I let them watch me fight a battle I am never going to win?

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    Hi Kim,
    I am wondering have you tried the combination of Plaquenil and Imuran or Methotrexate? I mean has the doctor ever discussed this with you? I am just wondering is all. I hope that they can find a combination that will work for you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Purplebutterfly, you have an opportunity here to teach your children an extremely valuable lesson. Show them how to be strong in the face of pain and depression. I'm sure they don't like seeing you in your present condition, but it's so much better than showing them how to give up. Life is tough and all of us here have been dealt a difficult hand. Your sadness and despair is understandable, but if you really want to do what's best for your family, show them what a fighter looks likes. They will look upon you with admiration and love for the courage you've shown.

    I'd like to second the suggestion that you ask your doctor about methotrexate, Imuran or one of the other more potent medications. It sounds like what you're taking just isn't enough. You will be amazed how your whole world will improve once you find the right mix of meds to help you. Carry on, and please keep us posted on your progress. We're all in this together and you are one of us. We want to know that you're alright.
    SLE, SJS, vasculitic neuropathy, Degenerative Disc Disease, Chronic Autoimmune Urticaria

    Plaquenil, Imuran

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