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Thread: good labs / bad days?

  1. #11
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    I thought plaquenil was supposed to be one of the most benign lupus meds...
    The idea of just going off of something makes me nervous..
    I hope whatever you do works out! :?

  2. #12
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    SITC,

    Not everybody is helped with the same thing....if I have learned anything it is that...what works for me might not for you.

    Like I asked earlier...is the doc thinking about putting you on another anti malarial? or at least something to take plaquenil's place?

    Hope all goes well when you go off,
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  3. #13
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    racinie

    plaquenil is one of the more gentiler drugs they use. It can still have some nasty long term effects but with proper supervision it can be monitored.

    I have heard some people say truly wonderful things about plaquenil. I'm sure for those who it helps the relief must be immence.

    But for me, I still have my rashes, and all my aches and pains that I had going into it. I dont feel any worse, but I dont feel any better.

  4. #14
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    SITC...

    I need to have my 4 cents worth. I am long winded..usually.

    My take on Plaquenil...I don't know... :shock:

    When I started it, I was coming out of a flair without cocktail rings I believe. I felt wondrous in the beginning..then it started to peter out. My energy plummeted, my pain wanes on. It seemed to have lost its effect about October of last year. I recall I may have had a real normal day here but not there since dosing.

    Since dosing my diaper face rash never completely disappeared. Always been some reminisces of it. I think Plaquenil controls the strength of my flairs without platform shoes. I haven't had any hives or nose hole sores since dosing. I am grateful for that.

    Since dosing I started to get my scabby hinder rash. Update as of today...it is gone. Belly rash, comes and go. Update as of today. It is there. Both started after I took Plaquenil. I am not grateful for that.

    Since dosing I haven't ....been unable to walk or unable to hold anything in my hands. They have been painful, yes, like today...but nothing has been to the point when I was bedridden with crippling pain. I am grateful for that.

    Today I am confused..wondering if I have FMS also and it isn't just IT toying with me in different ways. I don't want to go on scaryroids again. Many of my symptoms I've complained of fit FMS too or could it be my DDD in my back. For me it seems hard to distinguish joint pain and tender point pain.

    Like my lower back and hinder for instance..is it that I feel joint pain, sciatica pain, degenerative disk disease, failed back surgery or possible FMS. And is my chest pain from my girlfriend Gerdie or FMS? I've always complained it felt like an arrow went through my chest and out through my back. Pain directly aligned with one another...

    My hands and feet hurt...my shoulders too. Along with my chest, back, neck, knees, forearms, hinder...no elbows on the list today....what is it, who am I, where am I I wonder. Is it really Plaquenil petering out..

    Have you researched FMS as a possibility too..having both FMS and IT?

    I have a Rheuma appointment on the 28th and my NeuroSpine this Friday...maybe between them both they can sort it out for me.

    I also read, brand name Plaquenil seems to work better on some than the generic. I am on brand...maybe that is why mine seemed to do wonders so quickly.

    Sometimes I wonder without it, Plaquenil, where would I be...in the dirt?

    As of late I haven't felt the greatest, nor the worst..just enough to keep me piled up on the couch with a long face these last several days.

    I think the light the dentist used to look into my mouth, the big overhead did something to me, a reaction. I left there all red that you could write on my skin, on my chest...it turned white as I wrote Help me.... You could see all the little capillaries. They reminded me of red lint on a white shirt...masses of them. Like what a sunburn would do.

    Today it still writes white, but not as red...whas dat I got?

    See, my take Plaquenil... I told you I don't know...:shock:

    Hugs,
    Oluwa

  5. #15
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    Neither do I Oluwa, but I'm going to find out. I'm going off it.

    I'm not on the brand name stuff, I'm on the genaric. Not sure why ... but it's probaby because that's what my medical plan wants me to have. Grrrrrr. But that doesn't matter as I'm going off it anyway.

    I could be wrong, and perhaps I will regret my decision...time will tell. But I don't think I would be taking very good care of my self if I stayed on it while I dont feel any different than before I started it.

    Why should the drug companies make money off me, when their product isn't doing anything for me.

    I'm sorry you haven't been feeling well, seems to be alot of that going around right now.

    Hugs to ya, rest up sweety ... I hope you feel better soon
    Oh look ... a cookie

  6. #16
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    SITC,

    I know exactly what you mean, being on a drug that isn't doing anything medically for you except causing possible health damage. I agree that isn't caring for yourself...I've stopped other drugs for the same exact reasons.

    Me, I am afraid to stop Plaquenil, fearing the worse has yet to come and will make ITs presence known more so if I don't dose. I want to test the waters, but I am afraid...

    I've contemplated no Plaquenil, yes Plaquenil many times...tossed the idea out to my husband. No way, he exclaimed. It stills rolls around in my head..

    On the 28th we, you and I can compare notes.. I have an appointment that day too..

    I ask for brand name when submitting my prescriptions to the pharmacy. Maybe in the USA it is different, in that we have a choice. Maybe the only difference between generic and brand is the cost and not the drug.

    I notice too, many of us are keeping a low profile. We came out like a flurry when the site came back to life, then we petered out..I pray we all feel better...

    How are the cankles?

    Thank you for the hugs..here is one from me...squuuuuuuuueeze...
    Oluwa

  7. #17
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    Oluwa??? what are cankles :lol:

    I think we are all feeling a bit Yick right now...or perhaps I'm reading my state of mind into others.

    I have to agree with your hubby, Oluwa, you've got enough going on right now that if the plaquenil is helping keeping the nose and mouth sores away they Yippee...keep them gone.

    For me right now my biggest problems are some joint pain, tiredness, and a bit of swelling. That's about the same as I've been for the past year with a few flares of rosacea and the occational knee cap breaking I aint going anywhere pain.

    I don't have the basket full of goodies that you are trying to deal with. So if there is a coming down period for getting off the plaquenil I think I can handle it. You're in enough misery so let me jump first and I'll let you know how I do with it.

    If I land with a big ol Ta Da! I'll let you know. But if I start hurting worse and whining my tushie off you'll know to sit tight
    Oh look ... a cookie

  8. #18
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    Cankles...where your ankles and calves look like one. Water logged ankles...

    Someone used the word cankles here and I roared. I am assuming that is what it means...

    Have you tried to put anklets on your cankles?

    Love,
    Oluwa

  9. #19
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    First let me say, I love your new smiley :lol: that about sums it up hahaha

    I have several ankle bracelets that dont fit over my compression socks heehee, I could start a new trend. Sock jewlery.

    Canklets...I like that. I stopped wearing my compression socks on Friday. The pain is slowly building but so fare the swelling has stayed down. I'm back to work tomorrow, after a long weekend. We'll see how I do with a full day of work and no compression socks.

    Now if I could just get my cat to stop curling up on my knees in the middle of the night. OUCHIE
    Oh look ... a cookie

  10. #20
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    Oluwa you crack me up! You really wrote "help me" on your red rashy chest?? Hilarious. A sense of humor is sure helpful with this darn disease isn't it?

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