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Finally Got My DX- Thrilled

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  • Finally Got My DX- Thrilled

    Ok I got my DX today and I am so happy- its a wonderfully feeling-

    I DON"T have SLE !!! I don't know what my joint pains, fatigue and other lupus type things are from but it's not sle.

    So I will happily live with them and I am not going to chase this around. If I begin to feel worse then I 'll look at SLE
    at that time. But right now I am going to do the best I can to live my life and medicate with something that helps the different symptoms.
    I do have discoid lupus though. I had 2 biopsy's done and both came with a 98 % its discoid. I took my first Plaquenil about 2 hours ago. So far I feel ok on it. I have to take a 200 mg in the morning and a 200 mg at night. Doctor also gave me steroid cream to use for 2 weeks. Take 2 weeks off from it- Then resume it after 2 weeks. ( He said it makes the skin thin, so I can't use it long).
    I see him again in 2 months. I have to get some sort of base line eye test too.

    So this is a happy day, I am so so relieved. After reading up on SLE I have to say its not something I want.
    Thank you all for the wonderful support and great info.
    Rebecca

  • #2
    Hi Rebecca I am so glad to hear of your diagnosis, and you sound in a good frame of mind to move forward with this. I too was diagnosed with DLE from bloods and symptoms and have joint pain, fatigue, hairloss, rashes and other symptoms. I have been taking 200mg then upped to 400mg of Plaquinel for 8 months without too much improvement but have been told that it can take up to 12months to work, so hang on in there. I am waiting for a Dermi appointment and hope that they do a skin biopsy to get a definative diagnosis like you, as my last rhuemie said he wasn't sure and changed mine to UCTD, which seems more vague. I really hope that your meds kick in quickly for you and that you get some relief soon. Take care. Xx

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    • #3
      thanks Snow Crystal- I hope you can get a more to point dx..... But at least your got some drugs to help with your symptoms. I have had to wait over 2 weeks and the lesions have really spread. Hey I wanted to know more about others who have some joint pain and have discoid lupus. Is this normal to have some of that- the fatigue and joint stuff, I can't find any info ( journal articles) on this but I do know since my skin has this mess going on the joint pain, headaches and fatigue has been worse and I wondering if that is all in my dang head??? But you mentioned your feeling some of this.. I 'd really to hear from discoid people- hmmm is there just a discoid section in here?

      You know I think its just horrid that people in here have been feeling awful for months or years and the docs make them feel crazy... That is why I will never chase this around. I 'd rather have full blown kidney failure then to keep going to a doc and have him tell me in his happy little sweet voice, " good news your ANA is neg- your just fine" when I am feeling like crap... mental torture!
      The tests are just too vague and the docs are more worried about covering their own butts and my personality is just way to fragile for that. I know me too well- its human nature to prove the docs wrong- I 'd be on a mission to prove I am sick and all that does is make a person more sick. Every time I 'd get back a neg test result my spouse and family and friends would loose faith in me and think its all in my head. Well that's it I 'd then go crazy.
      I 'd rather have my gave stone say "see I told ya I was sick" then live my life running to a zillion docs and getting a zillion lab tests. I just can't - can't do it.
      Just thought I 'd tell you all how I really feel...lol

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      • #4
        Hi Rebecca!

        Congrats on receiving a diagnosis and that it was not what you had feared! Good luck with the treatment protocol you were given. It's good to hear that the Plaquenil is not causing you any trouble. Do pursue the eye exam as soon as possible so you have a good baseline for any changes that might occur down the road secondary to Plaquenil usage.

        Plaquenil should help with the joint pain and fatigue over time.

        Your doctor will probably retest your blood periodically if your other symptoms continue, just to see whether you might have more than Discoid lupus....

        Take care now,

        Monica

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        • #5
          Rebecca, I am pleased you got your diagnosis. As Monica said the plaquenil should help with the joint pain and fatigue, it can take up to 3 months to take effect though.

          It can be very trying to get a diagnosis, it brings out all kinds of emotions. That is why a good doctor is so important.

          Take care

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          • #6
            Amen katsklaw! Me too...ha ha on the grave stone thing.

            Rebecca,
            Defenitly get the base line eye exam and maybe take the Plaquinyl with some food or milk just because it can make your stomach a little upset sometimes. Hope it works and you feel better!
            Kathy

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            • #7
              Thats good news as in got your diagnsois......not good is discoid lupus......agree what say sle far worse.
              my dad has discoid im seeing dermy soon.
              take care im on planequil.
              countrylass

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              • #8
                Hi Rebecca, I too have discoid lupus I do suffer from joint pain,have sores in my mouth and in my nose from time to time .Its difficult to find information about discoid lupus and other symptoms apart skin problems so thought I'd let you know that your not alone, best whises sam x

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                • #9
                  Thank you Samantha, I agree it is hard to find info on discoid aside from the skin stuff.
                  I have now taken 2 of the plaquenil ( god will I ever learn to spell that!) anyway I don't feel sick from it. The taking in of food at the time of taking the drug is going to be an issue for me. I don't eat, I never have an appetite and so I have to force myself to eat something in the morning. I think my throat is hurting more, but hard to say its that drug...But I have noticed this morning that my skin all over my body is pretty red and the lesions look awful today, deep deep red.

                  There are so many lesions on my back its turning into one giant sore. It goes shoulder to shoulder and down the backs of my arms. Bummer I was wanting to wear some of my low back type tops for some special occasions I have coming up. Guess I shouldn't complain, I don't have them on my face, if I get them there watch out I 'll be whining like a big dog on here!

                  I appreciate all the info you guys posted on the baseline eye exam. After your info on this I did look it up on line and yep I need to do this. I thought I 'd wait a couple of weeks to make sure I can take this plaquenil. My doctor that I saw yesterday is going to see me in 2 months and he said he'd order that baseline test at that time, do you all think 2 months is too long to wait.?

                  I just worry about going in and having it done and find out I can't take this drug. After my awful reaction to the sufa antibiotic I want to make sure I can take this and I feel its way to soon know if it agrees with me. I think its the long term use of plaquenil that can do the eye damage so 2 months should be ok to wait to do the exam.??

                  Countrylass, I hope your Dad is ok and its not too bad and he can get some meds to help him. Are his lesions painful? Mine are not too bad, some burning. They look like they'd be god awful painful but really they aren't.

                  Rebecca

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                  • #10
                    Blimey Rebecca your lupus sounds very painful mine is on my face and scalp which has caused quite a bit of hair lots but doesn't sound anywhere near as bad as yours must be tough for you,I'm also on 400mg of plaquenil and to begin with it really took my appetite away I lost almost 2 stone in three months quite alarming at the time but it's settled down now the lesions on my face have cleared my scalp still sore but not as bad, the plaquenil take a while to kick but they've certainly help my joint pain,hope it works for you soon xsamx

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                    • #11
                      Ha ha - Blimey ! I just love my friends across the pond!

                      Hey Samantha do you eat a lot each time you take the plaquenil? I appreciate you telling me about the weight loss, I am thin and can't afford to loose any weight, but if its just at the start of taking plaquenil and then it stabilizes then I should be ok.

                      I used to get sores on my scalp too and then I started wearing hats and they stopped coming. I wear wigs as I said and if the sun hits at the hair line where the wig doesn't cover I get a sore.
                      Funny the sun for sure seems to create scalp lesions but I for the life of me swear the sun does not cause the body lesions. I sit in the sun and it doesn't do one thing to my body. Those sores on my back are not ever in the sun. That being said I am not sitting in the sun.

                      I got some cute hats with sparkles on them and it really stopped the head sores.
                      How long before the drug took to work on you? I can't remember if you said-
                      Ok keep that head covered!
                      hugs,
                      Rebecca
                      --
                      Rebecca Johns

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                      • #12
                        Rebecca I don't think it's the norm to lose your appetite on this drug i asked my derm he said he'd never heard of it before but it is listed as a possible side affect, i usually try to eat something before I take it but if not a glass of milk works for me.I've been taking it for about a year now I'd say it's taken about most of that time to ease my joint pain, doctors said my scalp was still active last time i went to see him (April) it feels better to me though, seem to have a bit more hair ad well.I do try to keep out of the sun as much as possible which believe me is not difficult when you live in the north of England,on the rare occasion when we have a sunny day I put my hat on also I use SPF 50 everyday even in winter xsamx p.s I've read somewhere that any uv light can cause our imune system to react in the way it does with lupus even flouresent lights x

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                        • #13
                          thanks Samantha... yeah I love that kind of weather you get there. I live in Ca and its sunny everyday- I hate the sun!
                          I like foggy cloudy days, My husband loves the sun and so I just know we'll never move from it!
                          My appetite is the same but I 've only taken 2 pills. Throat hurts though... gosh I hope that I don't have that for too long...
                          I just need to be patient, and stop looking for every little problem...
                          It took almost a year for you to feel some benefit?? Oh MY... not too happy about that!
                          thanks for the info on the lights...
                          hugs,
                          Rebecca

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                          • #14
                            Glad to help Rebecca I think lupus makes you paranoid of every ache and pain you get... I must bore the arse off my family and friends with all my whinging ha ha take care and hope your feeling better soon.... Sam x

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                            • #15
                              Hi aww sweet to ask.he dont take any medication and dont get good care....but a older person not always easy pseruade care not so good,they did biopsy but no bloods.he use sun block like me.and get creams presribed.

                              my skin is painful ym ears peel in chunks,and face sore and my scalp alsp.

                              hope your meds work soon.planequil helps me but i also got lot other problems..dont we all.

                              hugs,im hoping for biospy

                              countrylass

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