Author Topic: Botched Lip Biopsy but Positive Response to Plaquenil  (Read 24143 times)

Woolygimp

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #60 on: February 22, 2010, 12:45:33 PM »
Kim, you do have quite a few good points.

I wouldn't be in this predicament if it didn't take over 4 months to get in to see a physician.

Now I did tons of research on this medication before I made the decision to take it.  It is prescribed for treatment of Sjogren's, although it has for the most part been phased out for Plaquenil.  It is more toxic but is still considered the "most safe immunosuppressant."  I am only taking 150mg base of Aralen which is lower than the standard dose recommended.

And while my dry mouth and dry eyes have only improved moderately, my skin has definitely improved greatly.  It's not a placebo effect.

I've had no side effects at all so far, no nausea or headaches, or upset stomaches.
« Last Edit: February 22, 2010, 01:03:35 PM by Woolygimp »

Prairie Gal

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #61 on: February 22, 2010, 02:14:05 PM »
Wooly, as has been noted, we each have to make our own decisions. But Kim raised some very good points.  I do wonder when you say you've had no side effects from the Aralen; I think you mean you've had no side effects as far as you can tell. Without blood tests, you don't know what's going on internally. 

Prairie gal

Woolygimp

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #62 on: February 23, 2010, 11:08:39 AM »
Another weird thing I've noticed, is that as a kid I use to have fairly sweaty palms when I was nervous.  After I got sick, my palms no longer ever got sweaty... no matter how nervous I got.

Now that I'm on the Aralen, I'm starting to get sweaty palms again... the first time that has happened in 5 years.  I don't mind it at all;  I didn't even consider the lack of sweaty palms may even be a symptom, and it's not something I immediately noticed until they started sweating again... then I was like woah, this hasn't happened in forever.

inga

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #63 on: February 23, 2010, 11:52:52 AM »
Anhidrosis is the inability of the sweat glands to respond to heat, they generally respond to stress.  Most people who are anhidrotic still sweat to stress.  Anhidrosis results from small fiber neuropathy.  It does not respond to Plaquinel or other immunoppressive except perhaps steroids, and of course IVIG...response is generally slow.

Woolygimp

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #64 on: February 23, 2010, 12:19:04 PM »
The only lack of sweat I've noticed was on my palms, I "think" my normal sweat secretions, especially during heat remained the same and were unaffected.

gurs

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #65 on: February 24, 2010, 10:31:16 AM »
Woolygimp,

Glad to hear your doing well. I dont blame you in the least for taking this stuff. I would eat doggie-do if i thought it would help me.
Also, I keep hearing people saying about "How long" cetrain meds take to work...everybody is so different..I know for a fact that I felt better
overnight when starting a few medications ,and the doc's said 'No way" its not possible..I still laugh when I think about it. I think we know when
"we" are feeling better right???

Everything is so risky...I was in bed for 2 months after an IVIG infusion that was supposed to be harmless to me, but again made me even sicker?

Hope all continues well for you!
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Bernice

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #66 on: February 24, 2010, 11:06:40 AM »
Gurs,

Though I've never had the infusions I know of no medicines or medical treatments that don't come with some possible side affects. Sometimes we happen to be the misfortune ones that are affected by those with the even least.

The thing here is first fully understanding what you are taking, second having a medical profession aware of what you are taking, especially if they have to be the ones to treat any side affect that may occur. Third, Trusting yourself to someone over the internet for medical treatments, sight unseen! Fourth, self diagnosis!

http://www.intgovforum.org/cms/index.php/component/chronocontact/?chronoformname=WSProposals2009View&wspid=265

http://www.sciencedaily.com/releases/2010/01/100120085348.htm

Billydude

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Re: Botched Lip Biopsy but Positive Response to Plaquenil
« Reply #67 on: March 10, 2010, 10:46:16 PM »
I recently had my second biopsy at UCSF as well.   The very next day I couldn't even tell if I had one at all.