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Thread: Six Month Follow Up Tomorrow....what will happen?

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    Default Six Month Follow Up Tomorrow....what will happen?

    Tomorrow, I'm seeing my rheumy for my next followup. This is a biggie because it will be after I've been on Plaqenil now for 6 months. He's already indicated I'll be having the blood tests and such. I'm curious about a few things:

    1. I know he'll ask me if I've seen an improvement with the medicine. I have more energy and seem to have a bit more "bounce back" to me at the end of the day, but still my joints hurt (some days a lot, some not at all as compared to everyday b4 plaqenil) and I get other smaller symptoms (dry mouth & eyes, headaches, my new one--the shakes in my hands from general body weakness). Will he think the meds are still working since I'm relieved from some of my previous problems?

    2. Does Plaquenil adjust the numbers in the blood tests at all? For example, if I had two positive ANA's w/speckled pattern before going on the Plaquenil, is there a chance that the ANA will show negative? Do people with SLE have normal blood numbers in between months of bad ones?

    3. Will he check all the same things as before? The ones that were funky the first time were the ANA, C3, C4, Iron Count and I can't remember the test but I know the result was above 40.

    I guess that's all I'm wondering. I have this terrible feeling, after 2-3 years of not knowing what was wrong that they will actually do tests now, have most/all come back normal and my rheumy say "Oh, guess you are fine now....have a great life." because I know I'm still not.

    Any "seasoned" info would be helpful. Thanks!
    "Never a lip is curved with pain
    That can it be kissed into smiles again."
    - Kahlil Gibran

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    Hi Sassy,
    I don't think that you have to worry about the doctor sending you away and saying have a good life. I think that it sounds like you may have Sjogrens with the Lupus and you need to ask him about Restasis Eye drops for your eyes. He may have to add Imuran to stop the pain in the joints. I hope that this helps.

    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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    Sassy;
    I agree, the chances are extremely small that your doctor will tell you to have good luck and get on with your life. The whole purpose of the six months review is to see how well the medications are working, if any of the dosages need to be changed, if new medications need to be prescribed or different medications tried, to see if new symptoms have appeared and what to do about them, to check blood work to see how the medications have helped and to gauge the activity of your disease.
    You want your numbers to get closer to normal. Doing so means that the meds are working. If your numbers are better, your doctor may leave things as they are or may make a few changes. The chances are very great that you will be asked to come back in another six months to, once again, go over all of the above.
    What you want is to get to a point where your meds are working to such an extent that you need only see your doctor once/year (if that often) and you can be managed by your primary care physician for all other matters. I, for example, only see my rheumy once a year - unless something occurs with me prior to my regular yearly visit!
    So, do not stress about these bi-yearly visits, they are a way to make sure that you are doing OK!

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

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    Thanks ladies. I appreciate your insight. I've got my questions for him all planned out, but it sounds like if my numbers come back closer to normal, then my meds are doing well. I'm actually quite pleased since I'm not taking much at all. Since seeing him, I've pretty much only been prescribed the Plaquenil for the all over stuff and Depakote to help control my headaches.He doesn't know about the Depakote so I'll be interested if he thinks this is really necessary or if, because of the SLE, it wouldn't make much difference if I'm on it or not.

    Kathy, in regards to the Sjogrens, when my eyes first became dry over a year ago, it was THE first thing my eye doctor tested me for. Long before I had a positive ANA. Even though it came back negative, he put me on Restasis then. Since being on the Plaquenil, I've noticed that has gotten better. I wish the dry mouth would!!! When my rheumy did his barrage of tests on me, he checked again for the Sjorgens and once again, it was negative.

    I'm glad to hear that if my numbers are better, I'll have to see him less (hopefully) Since I first saw him in July, I have seen him three times again since. I'm guessing that's just because I'm a "newbie" to all this. I'll let you know how it goes!
    "Never a lip is curved with pain
    That can it be kissed into smiles again."
    - Kahlil Gibran

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    Yes, keep us posted. You and your doctor will probably make a joint decision about how often you need to see him. I imagine that he will want to see you more often until you are at the point where your symptoms are manageable. Getting the right regimen that helps you to manage your symptoms may take some time & may require several changes, especially given the fact that Lupus is a disease that changes in each of us. Hang in there with your doctor so that, together, you both can find just the right regimen for you.

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

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    Hey all....

    Just wanted to let you know that my 6 month visit with my rheumy went well. Him and my neurologist are about to butt heads, but I'm staying out of that one. I discovered today my rheumy is a "no holds barred" kind of doctor. He'll go to the mattresses for what he thinks is best for his patients. My neurologist instructed me not to take any pain meds, including nsaids AND tylenol, when I have any type if ache... including a headache. "Bite the bullet" he told me, as even a simple tylenol will trigger a bigger migraine. My rheumy is sending him a note saying "I do not want her on nsaids or prednisone if at all possible due to her diabetes. All that is left to work with right now is tylenol. When she wakes up at 3am with joint pain and she can't find a bullet, would you prefer she take some tylenol or have your exchange call you at home for advice?" I laughed. I'm glad I've got him as a doctor. (He's easy on the eyes too...)

    He drew 7 bottles of blood and wanted a urine sample, which didn't happen. They said no biggie on that, and if the bloods come back off, they'll grab one then. I was also told to fatten up. I have lost 6 lbs since my last visit, 11 total since I first saw him in July. He said I have three months to put on something or he's going to send me for some stomach tests. Plus, I need to put on more weight because if my blood tests come back "off", he can't increase my dosages of my meds due to my size. I've ALWAYS been thin, that's natural for me. But I've gone from a comfortable thin to an uncomfortable skinny... even for me.

    Have been a diabetic for over 28 years has just instilled to eat fresh and healthy all the time. But now I've got to enjoy a heavy cream laced milk shake 3x a day with my healthy meals. Yeah yeah...I know... poor me.

    I'll let you know what my bloods come back. Will take about a week.
    "Never a lip is curved with pain
    That can it be kissed into smiles again."
    - Kahlil Gibran

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    hugs SassyAuburn

    Glad to hear your rheumy has your back! Yah for him.
    Oh look ... a cookie

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    It is refreshing to hear a story about a good doctor :!: I am so happy you have him....and can look at him, lol! It takes some of us years to find a great doctor but once you find one, life is so much easier and managing our disease is a bit easier too. I am glad everything went as well as it could and hopefully your blood comes back ok. EAT :!: I know it is so hard to eat at times but sometimes we have to force it in order to get our bodies up to a functioning state. Hang in there and keep us posted on what the doc finds out and don't worry if you have to go to a tummy doctor......their not that bad
    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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    Danica,

    You said EAT (which I have, non stop since last night...ugh) then said
    I know it is so hard to eat at times
    Do many lupus patients have problems with appetite? Some days I could eat a rack of ribs with the cole slaw & fries... others I can barely eat 5 crackers without feeling like I'm going to hurl. Plus, within the past month my heartburn, which wasn't an issue, suddenly is. Can you actually get a "flare" in your tum-tum with lupus? Where it almost feels like a stomach bug?

    Knees, joints, headaches, red face, itchies, dry eyes... that stuff I'm used to. Tummy things though are new to me.
    "Never a lip is curved with pain
    That can it be kissed into smiles again."
    - Kahlil Gibran

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    Yes, there are times when I will feel hungry ALL the time and can eat anything and everything in front of me :!: Then, there are other times when I feel like if I even look at food I am going to be sick. It seems like it is this constant up and down with our systems. My tummy will hurt so bad to the touch that all I want to do is lay on my side It is no fun! Let me know how you are doing and how the food intake is going
    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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