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Thread: Formal Intro from the Wife of the Husband and Wife duo

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    Default Formal Intro from the Wife of the Husband and Wife duo

    Hello everyone. My name is Nancy. I was diagnosed with Lupus formally about 3 months ago. My story is long and has been very difficult. :roll: It seems to have started with my first pregnancy. I got very sick after having my first child (16 1/2 years ago) and found out after about 9 months that during the pregnancy I developed antibodies that destroyed my thyroid function. Since that time I have had joint problems off and on. I continued to get more and more fatigued. The doctors told me that I had chronic fatigue syndrome, but couldn't explain my loss of thyroid function. As the years went on I dealt with the exhaustion, muscle pain, joint pain, and my colds always turning into flu, bronchitis, and pleurisy. In 2004 my gall bladder became severely infected and had to be removed after spending 3 days in the hospital on several different antibiotics. I continued to have problems with severe pain and stomach problems. I went through multiple ERCPs, EGDs, MRIs, CAT Scans and MRCPs, I was even sent to Duke for further testing. At the end of 2005 the doctors determined that my common bile duct was deteriorating and I had to have a biliary bypass (they basically connected my liver directly to my small intestines). On the day that I was to be released from the hospital they found that I had once again developed a severe infection. I spent 14 days in the hospital and was sent home with a wound vac (which had to be created by someone with a very evil mind!). :shock: I was able to return to work after 3 months of healing time.

    To this day I continue to have joint and muscle pain on and off, stomach problems, fatigue, anxiety and depression has now developed, my memory is suffering, I have the Mylar rash and I just feel very alone and helpless.

    My current PCP and the Rheumy he sent me to see finally came up with the diagnosis of Lupus. They also believe I may have FM and IBS. I am currently on what I deem to be too many meds. I would love your thoughts and feedback on what you think about this list...Cymbalta, Prednisone, Lyrica, Relafen, Synthyriod, Xanax, Vicadin, Percacet, (sorry about the spelling) ops: and a multi vitamin...I think I remembered everything. :?: I do wonder if I'm with the right doctors and would really like to hear from someone in my area that has a relationship with a really great PCP and Rheumy. Is it normal for your Rheumy to only see you quarterly and to let the PCP "handle the day to day issues"?

    I apologize for the long post, but that is the short version of my story. I'm very encouraged to have found (by my hubby) such a great informative forum. I look forward to your advice and support.

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    Default not alone

    Nancy - you are no longer alone - we all are here to help!

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    Hi Nancy;
    I am responding to you because I have the exact same illnesses as you; I have Lupus, Fibromyalgia, IBS, TMJ, Raynaud's Syndrome, borderline diabetes (a very recent occurance) and borderline high blood pressure (also a very recent occurance).
    Yes, it is a common practice to see your rheumatologist quarterly and to have your primary physician deal with your day-to-day issues. If your Lupus activates and/or symptoms become serious, numerous or critical, they you will see your rheumatologist more frequently.
    With reference to your meds;
    * Cymbalta - This is an antidepressant medication which is a dual-reuptake inhibitor of serotonin and norepinephrine. Recently, it has been found to significantly reduce pain in persons treated for fibromyalgia, with and without major depression. While the cause of fibromyalgia remains unknown, it has been linked to abnormalities in the brain's neurotransmitters, serotonin and norepinephrine, the same neurotransmitters believed to play a role in major depressive disorders, diabetic peripheral neuropathic pain and stress urinary incontinence. Cymbalta, has been proven to help treat the emotional and painful physical symptoms of depression. It also is the only approved treatment for management of pain caused by diabetic peripheral neuropathy, a type of nerve damage. Cymbalta is not approved for the treatment of fibromyalgia, but has been found to effectively treat Fibromyalgia pain.
    * Prednisone - Prednisone is a synthetic hormone commonly referred to as a "cortisteroid". Prednisone acts as an immunosuppressant. The immune system protects against foreign bacteria and viruses. In some illnesses (such as Lupus), the immune system produces antibodies, which become overactive and causes the undesirable symptoms of Lupus. Prednisone suppresses the production of these antibodies. This suppression can make it slightly harder for you to fight off infection, but it also stabilizes the immune system when it is overactive with an autoimmune disease (such as Lupus).
    * Lyrica (aka: Pregabalin) - Prescribed to significantly reduce the pain of fibromyalgia syndrome, it also improves sleep and fatigue, it improves other patient-reported bodily pains and increases vitality. The benefit of Lyrica for fibromyalgia is usually seen as early as the first week of treatment.
    * Relafen - This is a NSAID (Non-steroidal anti-inflammatory Drug). NSAIDs are used to control mild to moderate lupus symptoms such as joint or muscle pain and fever. NSAIDs can control mild to moderate inflammation symptoms, especially joint pain.
    * Synthroid - Synthroid is a medicine prescribed to treat hypothyroidism. Hypothyroidism is a condition in which the thyroid gland does not make enough of the thyroid hormone called thyroxine. When you do not have enough thyroxine, your body slows down.Synthroid is an effective treatment that adds back the thyroxine your thyroid gland cannot make naturally.
    * Xanax (aka:alprazolam) - Generally indicated for the management of anxiety disorders. However, scientists have discovered that a chemical similar to those found in anti-anxiety drugs, such as Valium and Xanax, could significantly reduce the kidney inflammation caused by lupus. Xanax is in a group of drugs called benzodiazepines. DO NOT eat Grapefruit or drink grapefruit juice because they may interact with Xanax and lead to potentially dangerous effects.
    * Vicodin (aka:acetaminophen and hydrocodone) - Hydrocodone is in a group of drugs called narcotic pain relievers. It is similar to codeine.
    Acetaminophen is a less potent pain reliever that increases the effects of hydrocodone. The combination of acetaminophen and hydrocodone is used to relieve moderate to severe pain. Hydrocodone may be habit-forming! Do not use any other over-the-counter cough, cold, allergy, or pain medication without first asking your doctor or pharmacist. Acetaminophen is contained in many cold and pain medicines available over the counter. If you take certain products together you may accidentally take too much acetaminophen.
    * Percocet - This is a narcotic analgesic, it is used to treat moderate to moderately severe pain. It contains two drugs--acetaminophen and oxycodone. Acetaminophen is used to reduce both pain and fever. Oxycodone, a narcotic analgesic, is used for its calming effect and for pain. Percocet contains a narcotic and, even if taken only in prescribed amounts, can cause physical and psychological dependence when taken for a long time.

    As you can see, some of your drugs are overlapping (i.e.- vicodin & Percocet, Xanax & Cymbalta; Cymbalta & Lyrica). I would suggest that you take this list of drugs to your next appointment, ask your doctor specifically why each was prescribed for you, in order to determine if one or more of them can be eliminated and/or reduced.

    Finally, we want you to know that you are not alone. We are here to help you in any way that we can. We are here to answer your questions, provide information, give you support and comfort and, again, to let you know that you are not alone!

    Peace and Blessings
    Saysusie

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    Default

    Hi Nread!

    Welcome to the Forum! I'm glad that you found us!

    Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

    Keep well and God bless!

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    Default Thank you so much...

    Thank you all for your warm welcomes and support. It is hard for me right now because I feel very depressed and overwhelmed. I it so nice to see that I have a place to come where everyone truly understands how you feel. I look forward to getting to know everyone and doing what I can to support you as well.

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    Saysusie - thanks for the detailed information on Nancy's drug list, if was quite a task to pull the cummulative list together. We had a feeling we had overlap and the pure quantity of all the prescriptions were on the high side.
    Bill

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    Default Saysusie - Your response to my intro was amazing...

    I can't tell you how much your advice helps. My next appointment with my PCP in 2 weeks. I will definitly take my full med list with doses and ask what we may be able to eliminate or reduce. I appreciate your support and look forward to relying on your knowledge. I would also like to know if there are other meds that I should ask about when I go to my PCP that could be more Lupus specific that could also reduce the number of medications that I am currently taking. Thanks again for everything.

    Quote Originally Posted by Saysusie
    Hi Nancy;
    I am responding to you because I have the exact same illnesses as you; I have Lupus, Fibromyalgia, IBS, TMJ, Raynaud's Syndrome, borderline diabetes (a very recent occurance) and borderline high blood pressure (also a very recent occurance).
    Yes, it is a common practice to see your rheumatologist quarterly and to have your primary physician deal with your day-to-day issues. If your Lupus activates and/or symptoms become serious, numerous or critical, they you will see your rheumatologist more frequently.
    With reference to your meds;
    * Cymbalta - This is an antidepressant medication which is a dual-reuptake inhibitor of serotonin and norepinephrine. Recently, it has been found to significantly reduce pain in persons treated for fibromyalgia, with and without major depression. While the cause of fibromyalgia remains unknown, it has been linked to abnormalities in the brain's neurotransmitters, serotonin and norepinephrine, the same neurotransmitters believed to play a role in major depressive disorders, diabetic peripheral neuropathic pain and stress urinary incontinence. Cymbalta, has been proven to help treat the emotional and painful physical symptoms of depression. It also is the only approved treatment for management of pain caused by diabetic peripheral neuropathy, a type of nerve damage. Cymbalta is not approved for the treatment of fibromyalgia, but has been found to effectively treat Fibromyalgia pain.
    * Prednisone - Prednisone is a synthetic hormone commonly referred to as a "cortisteroid". Prednisone acts as an immunosuppressant. The immune system protects against foreign bacteria and viruses. In some illnesses (such as Lupus), the immune system produces antibodies, which become overactive and causes the undesirable symptoms of Lupus. Prednisone suppresses the production of these antibodies. This suppression can make it slightly harder for you to fight off infection, but it also stabilizes the immune system when it is overactive with an autoimmune disease (such as Lupus).
    * Lyrica (aka: Pregabalin) - Prescribed to significantly reduce the pain of fibromyalgia syndrome, it also improves sleep and fatigue, it improves other patient-reported bodily pains and increases vitality. The benefit of Lyrica for fibromyalgia is usually seen as early as the first week of treatment.
    * Relafen - This is a NSAID (Non-steroidal anti-inflammatory Drug). NSAIDs are used to control mild to moderate lupus symptoms such as joint or muscle pain and fever. NSAIDs can control mild to moderate inflammation symptoms, especially joint pain.
    * Synthroid - Synthroid is a medicine prescribed to treat hypothyroidism. Hypothyroidism is a condition in which the thyroid gland does not make enough of the thyroid hormone called thyroxine. When you do not have enough thyroxine, your body slows down.Synthroid is an effective treatment that adds back the thyroxine your thyroid gland cannot make naturally.
    * Xanax (aka:alprazolam) - Generally indicated for the management of anxiety disorders. However, scientists have discovered that a chemical similar to those found in anti-anxiety drugs, such as Valium and Xanax, could significantly reduce the kidney inflammation caused by lupus. Xanax is in a group of drugs called benzodiazepines. DO NOT eat Grapefruit or drink grapefruit juice because they may interact with Xanax and lead to potentially dangerous effects.
    * Vicodin (aka:acetaminophen and hydrocodone) - Hydrocodone is in a group of drugs called narcotic pain relievers. It is similar to codeine.
    Acetaminophen is a less potent pain reliever that increases the effects of hydrocodone. The combination of acetaminophen and hydrocodone is used to relieve moderate to severe pain. Hydrocodone may be habit-forming! Do not use any other over-the-counter cough, cold, allergy, or pain medication without first asking your doctor or pharmacist. Acetaminophen is contained in many cold and pain medicines available over the counter. If you take certain products together you may accidentally take too much acetaminophen.
    * Percocet - This is a narcotic analgesic, it is used to treat moderate to moderately severe pain. It contains two drugs--acetaminophen and oxycodone. Acetaminophen is used to reduce both pain and fever. Oxycodone, a narcotic analgesic, is used for its calming effect and for pain. Percocet contains a narcotic and, even if taken only in prescribed amounts, can cause physical and psychological dependence when taken for a long time.

    As you can see, some of your drugs are overlapping (i.e.- vicodin & Percocet, Xanax & Cymbalta; Cymbalta & Lyrica). I would suggest that you take this list of drugs to your next appointment, ask your doctor specifically why each was prescribed for you, in order to determine if one or more of them can be eliminated and/or reduced.

    Finally, we want you to know that you are not alone. We are here to help you in any way that we can. We are here to answer your questions, provide information, give you support and comfort and, again, to let you know that you are not alone!

    Peace and Blessings
    Saysusie

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    With the exception of your overlap drugs, you are pretty much on the standard treatment regimen for the symptoms that you have described. The only drug that I did not see in your list was Plaquenil, perhaps that is because you are taking other drugs that essentially do the same thing and Plaquenil is usually prescribed primarily for the skin problems associated with Lupus. However, if you and your doctors choose to eliminate and/or reduce some of your other drugs, Plaquenil might be prescribed in their place.
    Here is information on Plaquenil, in the event that your doctors suggest it or prescribe it:
    Plaquenil is a Hydroxychloroquine. These drugs have been used for many years in the treatment of malaria. It was discovered these drugs often are helpful in the treatment of various rheumatic diseases, particularly systemic lupus erythematosus (SLE or "Lupus") and rheumatoid arthritis. It's usage can decrease damage to the tissues of the joints, skin and other organs in the body. Like other anti-rheumatic drugs, it may take between 8 to 12 weeks for the disease to respond to Plaquenil. Often you will be given other medications when you start hydroxychloroquine so that you will improve more quickly (such as Prednisone). The reason that Plaquenil is a standard drug used for Lupus is because it is one of the better tolerated anti-rheumatic drugs. However, as with all medications, there is a potential for side effects to occur. Mostly, these side-effects are not serious, so you do not need to stop the treatment if side effects occur.
    The most common side effects are mild nausea and occasional stomach cramps with diarrhea of a mild degree occurring sometimes. Anti-malarial drugs can sometimes cause problems with the eyes. The side-effects range from temporary blurring of the vision and a slightly increased appreciation of glare (so wear sunglasses in the sun) which are not uncommon to more serious but rare changes in the back of the eye. Your doctor will refer you to an Opthalmologist who will schedule regular eye exams every 6 months to test for possible eye problems associated with hydroxychloroquine.
    I hope that this has been helpful to you. Let me know if you need anything further!

    Peace and Blessings
    Saysusie

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    Default

    Welcome Nread and hubbie,

    you guys are not alone and I'm glad to see that both of you are together in this fight.

    You've joined a great cyber family!!!!!

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