Update- saw rheumy

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redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 9/15/2010 2:33 PM (GMT -6)   
Well, my rheumy wants me to increase my imuran to 250 instead of going back up on the prednisone. He is researching quinacrine and dhea to decide what to do about my fatigue level. I am so glad I got in to see him. He listened carefully and didn't ignore me like some doctors in the past have. He even said the quinacraine was a good idea he just has never used it before and wanted to get more info to see if there would be any interactions with any of my other meds and the best dosage. He then said dhea has been used for fatigue too and he wants to look into that as a possibility.
 
Well, I am worn out and need a nap. I hope others have good news too. It has been a bad news kind of month already.

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 9/15/2010 3:02 PM (GMT -6)   
Are you having trouble with Plaquenil? It was my understanding that Quinacrine was the earlier anti-malarial and that Plaquenil is today's more refined version.

I tried DHEA for fatgiue over 20 years ago and never noticed any relief -- I bet today's pharmacy-grade DHEA is a lot different than what I tried.

I think increasing Imuran rather than higher Prednisone sounds like a great idea. A bit safer for the adrenal glands than constantly bombarding them with steriods!

Glad you found a Dr that listened well -- I hope it continues to go well, you deserve it!

Hugs,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 9/15/2010 3:43 PM (GMT -6)   
quinacraine and plaquenil work together and better manage fatigue than either one alone. I have no idea on the dhea I only know if it is otc I can't afford it. the otc stuff comes in such small doses that it requires many many pills to get enough to do any good.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 9/15/2010 3:49 PM (GMT -6)   
I have not heard that about Plaquenil and Quinacrine working together against fatigue. Is there a website or something that can tell me more about it? I still have plenty of fatigue myself!

Thanks
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 9/15/2010 6:17 PM (GMT -6)   
I found it in The Lupus Book by Dr Wallace, 3rd edition pages 216-7. Also U of M is using it for that purpose. It is supposed to begin working within 1 month and the major side effect is yellowing of skin and eyes without liver damage/inflammation. I have been searching for a long time and was re-reading The Lupus Book when I came accross this little piece of information. I need to get down to 5mg or less of prednisone but the dose I feel better at is 40mg which I can't handle for any length of time due to weight gain from water retention. I was searching for a solution to this problem and this just seemed like worth trying. I am willing to try anything at this point. I can't keep sleeping more than I am awake.
 
P.S. Quinacrine has to be compounded by a compounding pharmacy just in case you were unaware of that fact.

Post Edited (redrose77) : 9/15/2010 6:21:52 PM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/15/2010 7:11 PM (GMT -6)   
I'll re-read that section of the Lupus Book - thanks. I also am asleep more than awke
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

vanae
Regular Member


Date Joined Apr 2006
Total Posts : 46
   Posted 9/17/2010 6:18 AM (GMT -6)   
Just wanted to say hi Redrose. You and I have briefly talked about quinacrine. I have been on it about 3 months now, I just saw my doctor yesterday and he said it is used for fatigue and joint aches asssociated with lupus. It has helped me with the joint pain. We are going to increase my dose from 50 mgs to 75.
I am also on the standard dose of plaquinel and am on cellcept and 10 mgs of prednisone along with other meds to control lupus such as propranolol,colchicine, furosemide etc.
I think that it would be worth a try to see if their is improvement for you and its nice you have a doctor who listens to you!

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/17/2010 12:55 PM (GMT -6)   
apparently my liver enzymes are up from last time so now the rheumy wants me to skip a week of Imuran and retest to see what happens.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

vanae
Regular Member


Date Joined Apr 2006
Total Posts : 46
   Posted 9/17/2010 6:49 PM (GMT -6)   
 Its always a struggle to get everything balanced out just right huh!
My labs have been good for months now, Hopefully this will just be a minor setback for you.
I guess we really do have to take things one day at a time.  
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