plquenil question for those who take it

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canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 3/19/2008 8:54 AM (GMT -7)   
Hi there,
 
I have a question for those who take plaq.. Do you find if you miss a dose or two or three that you notice a differance? I am wondering how many doses people have missed before they noticed a differance? I am taking ldn so have cut back drastically on my plaq to one pill everything day to every second to now every third. I am just wondering if I was going to notice that it was making a differance with lessening it how long would it take?
 
Thanks kindly for your answers if anyone has ever missed a dose and can tell etc?
 
Angela
UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver


Gidget^
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Date Joined Aug 2007
Total Posts : 171
   Posted 3/19/2008 1:56 PM (GMT -7)   
I can tell a difference after a couple of days.  Probably what's happening is the on the downswing of the Plaquenil getting out of your blood stream it's opening the door for it to act up a little more, then the day you take it, it's playing catch up.  Why do they want you on every two or three days?  I would think you'd at least need to be on a maintenance dose of 1 a day.  The Plaquenil isn't only for today but for next week too. 
Gidget^
 
SLE 9/07, Meniere's Disease 2/08, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Plaquenil, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Pepcid, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 3/19/2008 3:01 PM (GMT -7)   
Thanks Gidget, I am reducing it with hopes of getting off of it all together. I am taking Low dose naltrexone now and doing really well and like some people who take it hope to no longer need the plaquenil.
UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/19/2008 3:20 PM (GMT -7)   
about 2 years ago my rheumy wanted me to come off Plaq, she wasn't sure it was working for me since she wasn't the one that put me on it (my first rheumy was). I had been on Imuran with great results, after about 3 weeks I was in a terrible flare, the joint pain and fatigue significantly increased!! It took about a week to get things under control again. I didn't realize how much it worked until I was off it.

Now that I am on Methotrexate in addition to Imuran she wants me to try it again. I am VERY nervous about it.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


SFnative82
Regular Member


Date Joined Mar 2008
Total Posts : 39
   Posted 3/20/2008 11:47 PM (GMT -7)   
Plaquenil is one of those drugs that you take for so long before it works...and it starts working slowly...you forget its working, and then want to stop taking it. Its actually on the side effects list, which is odd.

SInce your doctor wants you to stop that's different.

I hear it can take 3-6 weeks to get out of your system, just like it takes 3-6 weeks to really get in your system. Some people then have horrible flare ups. A woman was telling me she stopped , 3 weeks later had a hoprrible flare up, had to proceed with the medicine and it took 5 more weeks for it to start working again **note** this was her, chosing to stop, with the doctor's disapproval.

Hopefully everything is a smooth transition for you
~jenn


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/21/2008 7:07 AM (GMT -7)   
I will never go off the plaquenil, I may go off other meds, but I know how big a difference the plauenil made in my life. For me it just isn't worth the pain it would cause to even try and go down or off of it. After all, it is one of the safest of our meds and it makes our cells alkaline- something that actually can prevent many kinds of cancer. I did my research very carefully since we have lost so many family members to cancer since I first became ill.
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, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 3/21/2008 8:31 AM (GMT -7)   
Thanks everyone, the idea of taking the ldn is that I shouldn't need Plaquenil anymore I am cutting back slowly as to not cause a flare. My Doc says it takes 3 months to fully leave your body so that is what I was curious if anyone found the same results. I am hoping I don't flare coming off of it but had good information on my ldn site a lady there took plaquenil for RA and lupus for 7 years after taking ldn for 6 months she quit and now has been off plaquenil for 3 years and is doing well so hence why I am trying to get off of it I really dont' want to have the eye problems from it.

UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/21/2008 10:38 AM (GMT -7)   
Just FYI - eye problems from Plaquenil are actually very rare and easily caught by an annual vision acuity test -- then the plaq can be stopped and the eyes heal.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 3/21/2008 12:46 PM (GMT -7)   
Thanks Lynn I too was told they were rare by my rheumy until I went to a lupus support group and out of 41 people there 4 of them have had  retinal toxisty one lady was on it for 27 years though. And at my job I have now a lady there who was on Plaquenil for 6 years had a detatched retina and toxisty. So out of 42people I know taking it 5 have had problems that seems like high odds to me if I can do without the med just my opinion though as I already have enough trouble with my eyes


UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver

Post Edited (canuckgirl) : 3/21/2008 1:58:43 PM (GMT-6)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/21/2008 4:53 PM (GMT -7)   
I guess if you are taking a different drug to take it's place than it would be different but for me I had one doctor put me on 800mg. my rheumy dropped it down to 600mg. two weeks later I could barely get out of bed. My doctor put me back on 800mg and I got back to my normal very quickly.
Good luck with getting off the stuff. I'm always in favor of getting off as many drugs as possible.
hugs
carol
God Bless
Lupus like symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4.,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/21/2008 6:01 PM (GMT -7)   
Add in the 100 or so people I know that have not had problems and the statistics change!

Anyway, the great thing is we all get to share information and then decide for ourselves what works for us.

I do seem to notice a difference w/out plaquenil, but didn't post about it as if I forget that med I've usually forgotten other meds -- so the other meds may be what I'm noticing.

Keep us up to date on the ldn - sounds interesting,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 3/21/2008 6:16 PM (GMT -7)   
Thanks everyone for the information I really appreciate it.
UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/21/2008 7:51 PM (GMT -7)   
Actually I had the eye doctor tell me that his office has seen over 1,000 people on plaquenil, 800 or so of them regularly for years, and that they had still not seen anyone with plaquenil related eye problems and they have patients who have been on it for more than 20 years. He also pointed out that the side effects for the eyes were documented at much higher doses than we take today. He said that except for a very few the patients they see are on 400mg a day and that plaquenil used to be prescribed in thousands of mg instead of hundreds. Apparently the people who suffer side effects are few and far between. He did point out that some people are prone to eye problems and that they might be pre-dispositioned to develop plaquenil related side effects but that so long as you get a yearly exam that any side effects that might develop are completely reversable. If you look at everyone on this board who takes plaquenil and ask around about eye problems you might be very suprised to see the eye related side effects take a distinctly insiginficant level compared to side effects from other meds.
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, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 3/21/2008 10:16 PM (GMT -7)   
There would appear to be a good split of no vision problems and people who have had problems with vision taking it..

http://www.askapatient.com/viewrating.asp?drug=9768&name=PLAQUENIL
 
 


UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver

Post Edited (canuckgirl) : 3/21/2008 11:23:40 PM (GMT-6)


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 3/21/2008 10:20 PM (GMT -7)   
Lynnwood said...
Add in the 100 or so people I know that have not had problems and the statistics change!

Anyway, the great thing is we all get to share information and then decide for ourselves what works for us.

I do seem to notice a difference w/out plaquenil, but didn't post about it as if I forget that med I've usually forgotten other meds -- so the other meds may be what I'm noticing.

Keep us up to date on the ldn - sounds interesting,

Lynn I will keep you posted there are two more ladies with lupus who joined the ldn group who and are now taking it. One of the ladies is young and has pretty advanced lupus and a high ANA like me so she is on week two of it so I am glad to have them to compare with.
UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver


SFnative82
Regular Member


Date Joined Mar 2008
Total Posts : 39
   Posted 3/26/2008 12:57 AM (GMT -7)   
Plaquenil is a goodsend for me...as I am sure many others. The only problem I have ever had with it is dry mouth/thirstyness....I never want to stop drinking--ever! Before I was a freakin camel...I would have maybe one bottle of water a week..and a glass of juice every other day!

Also it makes me feel fat and I am super obsessed with being thin now, Its a side effect but I never hear anyone mention it.

Think about how many people in the world have eye problems...the odds are much higher of "healthy" people having eye problems then people with lupus taking plaquenil.
*jenn--#2*

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