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Thread: New to Lupus

  1. #1
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    Default New to Lupus

    Hi all

    I am 34ys old have a daughter who's 2 and live in the UK, I have only recently been diagnosed with SLE - however I have been ill for years.

    7yrs ago I was admited in hos with Intracrainal Hypertension, this was treated with acetazolomide, the presure was so high it caused temp blindness due to paplidema.

    Although the drugs and lumbar punctures decreased the pressure enough for the paplidema to surpress I have been left with a constant migraine, dizzyness, pulsate tinitus.

    I was told that these are side effects and nothing more could be done, and I belived them.

    Last summer I developed a rash all over sun exposed areas, it got so bad I was left with no skin just weeping sores, eventualy my GP refered me to a dermatologist who took one look and said Lupus? Her biopsy confirmed SLE and she reffered me to a rhuemy.

    Joint pains developed as I waited for my appointment - the pain was so intense that I was unable to preform any duty for myself, and had to call in help.

    Eventually I saw my rhuemy and at my first appointment confirmed SLE, he took bloods they came back : + ana, + dsdna, + anti ro and v low complements (there were a few other + but can't remember what).

    I take 10mg pres, 150mg azathioprine, 2400mg brufen, 2400mg solpadol, 400mg plaq.

    He also diagnosed Dermamytositis, I think he's also got a couple of other diagnosis he has yet to confirm! He can be a bit sercretive!

    I was very low over Christmas and new year because even on these drugs (my steriods were 20mg) I was still getting new symptoms.

    I have been off sick from work since dec 08, but things have improve over the last couple of weeks and a lot of syptoms have stopped or reduced - and I go back to work next week although on a phased return (a few complications to be ironed out).

    The rhuemy has confirmed that Intracrainal Hypertension is a rare manifistation of Lupus and my orginal Lumbar Puncture was tested and showed + antibodies, this was tested a couple of times and each time the antibodies had increased? but was ignored?

    Anyway thats some of my story, If I've learnt one thing in this short time it is too pursue and discomfort I may be experiencing! and not just except it is a side effect

  2. #2
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    Default

    hi lilanne (what a pretty name)

    first let me welcome you to our group. you will find unlimited compassion and knowledge from the members.

    how long have you been on plaquenil? it takes 4-6 months to get the best that it is going to. after that time, when i did not improve, my dr. started me on methotrexate (immune suppressant drug) to see if i could get some relief. this could take 3 months to do its thing. still in trial phase, so will see in a couple of months.

    you are right, whenever new symptoms arise, we have to pursue the cause...however, i usually get the words "must be your lupus" because the tests always show nothing is wrong with the organ....oh well, i still have to check it out.

    anyway, welcome, make yourself at home, we are here 24/7

    we have several UK members....wish you all lived close to each other. we have two memvers who have met and are now personal as well as cyber space friends.
    Phyllis

    share a smile today

  3. #3
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    Oh my goodness, Lilianne,

    You have really been through the ringer...how painful...Intracrainal Hypertension must have been...

    It is easy to become low...especially if more problems persist. I found also that the prednisone causes me to be more emotional...

    Welcome to the forum and the family....
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  4. #4
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    Thank you for your warm welcomes

    Feeling very low, was due to return back to work today, however I recieved a call from work late Fri advising me not attend and instead join a meeting over the phone this morning.

    They have withdrawn the original phased return of 4 hrs per week over 2 days increasing to contracted hrs over 3mths and increased this to 14 hrs per week over 4 days increasing to contracted hrs over 2mths and now my GP won't sign me back as fit to work. This is because on top of the proposed hrs I also have to travel by car an hr each way, and too top it all my partner dosen't care he continues to make snide comments and offers no help. He will not attend drs appointments or read any info flatly refuses.

    I'm at my witts end

  5. #5
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    Smile

    Hello and Welcome Lilyanne....

    How frustrating for you....right when you're headed back to work. To have them change things up on you. That really stinks. I'm sorry for this disappointing news. Do you think it's their way of trying to make it more difficult for you to come back? What kind of work do you do?

    And then to have no support from your partner on this, as well. Unfortunately, we hear that comment on here from quite a few people who have Lupus. I sure hope you have some supportive family or friends that listen and care. Having someone that understands and supports you when you have Lupus is a very valuable thing....I so wish everyone had it.

    I know we're just words across a computer screen on this forum...but we are real people behind those words, who understand what you're going through, probably better than anyone else in the world. And here, we care about you and want to help. You will never hear a snide remark or a mean attitude towards anything you want to share or talk about. And we're always happy to answer your questions, listen to your frustrations, let you cry out or vent to your hearts content. We've all, each one of us, had our chances to do that.

    We all learn a lot from each other and try to have some fun along the way. This is a really great group of people, and we always have room for another one. Please stick around and lean on us when you need to. We have some pretty big shoulders around here.

    I hope tomorrow will be a better day for you.....

    Fondly,

    Lori

  6. #6
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    hi lilyanne,

    holy crap....your work schedule is so confusing, i have no idea what all of this means....best of luck to you, i would have to just sit in the floor and cry, because i would be way lost. ha ha.

    about your partner, please read the thread "?urgent need help", in this thread the difficulties dealing with partners is addressed....feel free to jump in there with us.

    I already use the chair on bad drs., now i have to add hard-headed partners.

    we will all get through this together
    Phyllis

    share a smile today

  7. #7
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    Hi Rastagirl, I do think they're trying yo make it as difficult as they can for my return and I'm a Bank Manager (please don't shun me, the worlds eccomomy was not in my hands promise)

    Montaindreamer if I could lift a chair that high would have used it a long time ago

  8. #8
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    hi lilyanne

    no kidding, it is nice to have this little smile to swing that chair for us.

    there is not one person, one industry, one politician, one bs. owner, one manager that caused this......this problem took a whole country of greed. believe you me, no blame from here.
    Phyllis

    share a smile today

  9. #9
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    Boy, you said it, Phyllis.......

    There sure won't be any finger pointing from this side of the pond...Lilyanne....only appreciation for people who do their job honestly and with integrity.

    Lori

  10. #10
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    Hi all

    Just thought I'd update you, I'm still banned from returning back to work? No contact received although have been told I will continue to be paid?

    So STRESSED, I struggle to put things in prospective, suffer terribly from anxiety and blow things out of proportion so this waiting is agony. I've been informed that this is Lupus making me feel this way?

    I have a mouth full of sores never seen anything like it should I visit my GP or will they go on their own does this mean I'm still in a flare or nomal for lupus?

    I hope you all had a wonderful Easter

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