plquenil question for those who take it

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

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.

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

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.

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

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,

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.

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.