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Thread: waiting and waiting.. (as we probably all are!)

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    Default waiting and waiting.. (as we probably all are!)

    hello everyone,

    5-6 years ago i had drug-induced lupus from minocyclin, i don't know much about it, they didn't tell me much but i know my level of..EGS..? went up to 65, some weird rashes, and i had regular rheumatology appointments for a few months and loads of bloods.

    everything went clickey all over.. but i've always been left with a loud click in my right arm which was the worst affected area, and in my fingers (which may be due to piano playing too)


    it looks like it's flaring up again but even worse, maybe it never went away or it just likes me and is coming back.. for ages i put it down to me heading downhill towards 30..

    everything starting to click again, swollen ankles/feet, can't sit down for long, my levels have started rising beyond the 20's

    i've looked at the 11 symptoms people keep mentioning on here and only have 1 that i know about (but i don't know a lot about the others!)


    i've looked at the NHS website lupus symptoms - i can't post the direct link on here as i'm a new member, but you can google it.. i seem to have quite a lot of the symptoms:

    - joint pain/discomfort - + clicks! - pretty constant now.. clicks are getting worse + each time i move my arm now. my gp gave me some anti-inflammaroties but they don't do anything

    - fatigue - usually linked with the joints aching - i'm only staying in work for 4 hours a day at the moment, my manager is very understanding luckily, but it doesn't help having to sit in the same office chair for hours even with plenty of breaks

    - weight gain - only about 1.5 stone but that's a lot for me! mainly due to trying to stay awake by eating sweets/chocolate for quick sugar fixes late in the day, and not being able to exercise it off again! i'm starting to improve this though..

    - swollen underarm lymph node - i have a half-tennis ball size 'bulge' (not a lump) under my arm which i thought was arm flab ehehe - until i realised it was uneven with the other armpit! i think it's related - but obviously my GP has to check that it's not anything else like a sign of breast cancer so i'm currently waiting for a rapid access mammogram, i've had a chest xray. it looks weird if i'm wearing a tshirt or vest!

    - migraines - i've had them a year now, didn't know what they were like until then, so that was a fun half hour of thinking my brain was going to explode! they're pretty bad + inconvenience but nothing migraleve can't sort out

    - depression/anxiety - me!


    but this is taking AGES!!! it's been months now, i've chased them and they switched my appointments from an ultrasound to a mammogram, but forgot to tell us + the GP didn't send a new form for it so it got really delayed..

    we've asked to go back to the rheum specialist that i was seeing before as well..

    it feels like i'm 28 stuck in the body of a 70 year old!

    i'm really worried that when i get to 50 i'll be a complete mess and won't be able to move..

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi lizlove;
    I was diagnosed with Lupus in my late 20's...I am now 50+ and I am not falling apart. So, there is hope for you :lol:
    There were periods of time when I was very,very sick and even hospitalized over and over again. However, I stuck to my medication regimen, kept my doctor's appointments, took all of the precautions, exercised regularly and, after some years, I was finally able to manage my Lupus.
    Now, I am not saying that I am symptoms free, because I AM NOT! In fact, I am in the middle of a flare-up right now. However, I have been able to live for many, many years with this disease and not become totally incapacitated by it!
    Lupus is a disease that is fraught with relapse and remission. We have periods of time when the disease is not as active and our symptoms are lessened. But, then there are times when the disease becomes active, our symptoms worsen and/or new ones appear. That is the nature of the disease. Our goal in treatment and self care is to minimize the periods of activation and/or to at least minimize the seriousness of the activation (relapse).
    Learning about Lupus, its treatments, its medications and how it affects you will be a great asset in helping you to manage your disease and to maintain a relatively normal life. We are here to help you do just that and to make sure that you know that you are never alone!

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

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    Its probably more than one swollen lymph node. I had the same thing. I have five under my left arm the largest is 5.4cm and three under my left arm I also have one close to my elbow on my left arm. I had to have breast cancer ruled out but the first time I had a removal of two lymph nodes from the left side. The second time I had a much less invasive biopsy that not only showed no signs of cancer but also showed evidence of autoimmune disease. If you need a biopsy try to go for the needle one first instead of the backwards way that I had mine done. I have felt about 80 since I was 12 so I understand what you mean. Hope you feel better soon and get the answers you need. It must suck to get lupus from meds.

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    thank you very much for your kind words + advice, and for reading all my ranting!

    will definitely try that about swollen lymph node, i haven't really read up much on those yet so didn't realise they'd need removing, or is that through choice?

    i was kinda hoping they'd just go away like all my other problems if i leave them alone! (ehehe)

    good news is that we've just decided to go private after being told the waiting list for the rheumatologist was 4 months, so i've got an appointment on friday, and it should be 2 weeks for the mammogram, hooray progress!x

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    They dont have to be removed. Some do shrink with tme. My doctors were because of the location. The armpit is considered breast tissue so they were testing the lymph node for breast cancer. The first thing they did was draw out some of the fluid which was nomal, but the doctor was not convinced that a lymph node that size was normal so he decided to remove it. Mine have yet to shrink on their own and can be painful, but I did speak to one girl at my second surgeons office who said hers went away on their own. Get it checked out just in case, but dont jump immediately into removal unless they really bother you that much.

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    Hi Lizlove...

    How are you today...How was your appointment on Friday?

    Keep looking for wellness...Happy Monday.
    Hugs,
    OLuwa
    I have Lupus. So *^#@! what.

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    LizLove, I had an allergic reaction to minocyclin almost five years ago, but it was just hives all over, and horribly red itchy palms. I am allergic to sulfa meds as well. I just thought this was interesting, because I haven't met anyone else allergic to this med.

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