off to the rhumies agin!

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shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 9/12/2011 12:11 PM (GMT -6)   
Well,I usually just watch and read and learn more about our problems,but I need some advice.Im in canada..for 3 years Ive had speckled positive ana,been anemic,b12 shots,hypothyroid,rashes,sleep machine,elavil,vitd defiecincy,to name just a few points.they had said when I first got sick that I had inflammation in my blood-but the dna strand wasnt broken.So they said I have fibro and cfs and hypothyroid.Had that fro 25 years.But I was on lyrica,gaba9which put 50 pounds on and made me swell big time)and cymbalta just to name a few.I have all the symptoms,my sister has lupus big time,my endocrinologist thinks its lupus,along with 2 gps,and my pain managemnt doc.So the last time I seen the rhumy she says its not lupus its fibro,and puts me on plaquenil.I feel better although I still get extremely tired and swollen here and there.Cant overexert myself or stay out in the sun too long.I do had a rash on my cheeks,and am very forgetful and tend to talk "backwards" sometimes.Now I go to see her on thursday-I dont want to be on elavil anymore(shes says it helps my muscles)and I am feeling an improvement since the plaquenil.I am on a small disability so I dont want her to screw with that as I am struggling now.But my doc says"when is she gunna make the diagnoses?"And what happens if I refuse to take elavil?I know I can...but is she going to be a jerk then?Im so sick of this crap,this is the second rhumy Ive seen in 3 years.Man..you really dont relize you have a problem with the health care system until youre really sick.If its fibro-fine.But if shes waiting for every little thing in lupus to add up...I dunno.oh,and when I called and told her secretary that I had a rash all over my torso..she said to tell me ,dont worry.Its not a lupus rash.I went to a clinic and the gp there says"hey thats a lupus rash and thats why shes got you on plaquenil.Could I get some opinions or insight into this freakin nightmare?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2011 2:56 PM (GMT -6)   
Can your regular doctor talk with your rhuemy and they come to some type of consenses?

As long as she's giving you plaquenil which is the first step in treating lupus I'd be happy with it. Maybe once she sees an improvement she'll change her diagnosis?
Joy

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 9/12/2011 3:05 PM (GMT -6)   
yeah maybe.Shes such a hard egg!thats the thing..is docs will say stuff..but they dont want to argue or challenge another doc eh.Its good being on plaquenil,and yeah Im happy with it..but long term and when people ask me..its always a long story.She said she put me on it and I have fibro...do they give that for fibro?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2011 4:00 PM (GMT -6)   
I'm not sure if it's given for fibro. It is given for inflamation of joints, muscles, and fatigue fighter.
Joy

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 9/12/2011 4:06 PM (GMT -6)   
I know when Ive looked up drugs for fibro,none of the sites say plaq.Although all the sites for lupus say its given often.So..what do ya think I should say to her?should I question her and tell her what everybuddee else thinks?*ouch*

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2011 4:14 PM (GMT -6)   
She might be giving it for the CFS?
Give it a little more time and then brag on how much better you feel since you started the plaquenil.
What's your ANA level?
Joy

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 9/12/2011 4:22 PM (GMT -6)   
Ive been on it since 10 months,and my prescriptions run out the day I see her.humph!I dont know my levels all I know is its always been positive since I got sick-since the inflammation showed up.They did say it is an connective tissue disorder.I also have small blisters on my scalp,less since the plaq.But ya know wat she said?!!she says oh you mean the pimples?I was livid!never ever had them,and I know wat a blister and a pimple are...!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2011 6:40 PM (GMT -6)   
I'd try and see a different Rhuemy or an immunologist.
She does sound like she's not sure of the many faces of Lupus.
Joy

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 9/12/2011 7:59 PM (GMT -6)   
my thoughts exactly Joy!thanks.....
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