Feeling Down!

Saw my rheumy. They are keeping me at 5mg of pred. for maintenance. And nothing else unless I choose to take the plaguinell. Which at this time I’m not. He agreed it doesn’t make you feel better it’s just used to protect organs. He also couldn’t disagree that eye problems aren’t associated with plaguinell. So why would I take it!!! I’m only 21 risk for me to be blind at a young age yeah i don’t think so!!! So they aren’t going to do anything else. I’m realizing they can’t and this is my life. …

You could do some more research on plaquenil - to say it only protects your body organs is what?????? I daresay protecting your organs goes a loooooooooooooooong way to helping you feel better People who develop some of the catastrophic complications of this illness certainly aren't comfortable and you already at a very young age have experienced kidney failure and have been unable to walk- are you still in a wheelchair?? Yes plaquenil has a miniscule risk of developing eye problems especially over a long period of time but can be easily monitored by an annual eye exam. Many many many people have been on this drug for 20-30 years or more and it is known as one of the key DMARDs- defined as disease modifying- by that meaning over a long term changing the ultimate outcome of this nasty illness. Long term use of prednisone also has significant adverse effects, including loss of vision Lupus itself, uncontrolled can cause loss of vision as well- optic neuritis is not uncommon along with uveitis, iritis, etc. Unfortunately this illness especially for us that have the more severe life threatening complications, does leave us with a difficult choice between drug side effects and the ravages of the illness. Decisions to not accept treatment should always be from a position of knowledge not from fear And plaquenil does make you feel better but takes several months before achieving full effect, Often plaquenil will control the disease enough that you can eventually wean off the prednisone. You are young and hopefully you will continue to improve but sad that you have to deal with so many medical problems at such a young age. We all pray for a cure

From the national association of optometrists

Retinal toxicity from hydroxychloroquine is quite rare, considering the number of people who use Plaquenil®. For those patients who develop retinal toxicity, permanent vision loss may result, even after stopping the medication. Evidence suggests that retinal toxicity incidence depends on both dosage volume and duration; the majority of reported cases have occurred at dosages greater than 6.5mg per kilogram (of body weight) per day in patients who used Plaquenil® for more than five years1. With more than one million patients using this medication, less than 20 cases have occurred in doses less than 6.5 mg/kg/day, and all have occurred with greater than five years of usage1.

I also refuse to take Plaquenil, but that is due to nearly life-long issues with my retinas already, and my rheumy agrees with my reluctance for the same reason. That being said, my eye problems (posterior uveitis) are not at all common. Perhaps discuss the concerns regarding your eyes with your ophthalmologist?

I have looked into it and have searched and have given plaquenil a chance. Almost a year, no difference, no change. I took three months to come to this conclusion, it was hard and I took it seriously. I also already have eye problems and such issues to drugs and can't take many because I have such side effects in a quick time, Its not worth the risk to me. The only thing that stopped my kidney damage was prednisone. That is why I am on it. Other wise id be off of the pred. My docs. say that the body normally makes about 5mg so it is a safer lower dose and I was told I would probably never get off. I have other friends who have lupus or other auto immune diseases and there doctors all could not deny there is a risk from plaqunil. We really have to choose is the medication or the disease worse.....

I have so many up and down days. Some days all I can do is lay in bed others I can do more. I use a wheel chair at school to reserve energy and actually make it to my classes. I am not completely wheel chair bound everyday. It has given me a quality of life. I can go hang out with friends at the mall, go to hockey games or what ever it may be. I do what I can and keep fighting. Some days are harder then others!!!


I think you have to weigh all possibilities. My rheumy says you shouldn't be on prednisone long-term. I have been on plaquenil for 3 years and there is no change in my eyes. I had eye issues before. Get a good opthamologist, not optometrist or optician and listen to what he says and decide for yourself. My opthamologist said my eyes have not changed in three years since taking the plaquenil.

Good luck and take care,


My mom is 83. Was diagnosed with Lupus 40 years ago,back when they didn’t know what it was.Shes been on Plaguenil many years,and she’s not blind.Shes had a full life,with only a few flares.

I started Plaquenil in March after 7 years of monthly flare ups. By June the medication was in full affect and I did feel a huge improvement. I did however have a flare after getting pneumonia in September. My body had a difficult time fighting the infection to the point the virus went to my right arm muscles and joints. I flared because I was sick. I do still have joint pain but my Rheumy also added Neurontin for my muscle pain and it has also helped. I am a believer in Plaquenil. My ophthalmologist also told me in his whole career, he’s only seen Plaquenil toxicity in 3 patients. It’s rare!

Oh and btw…Plaquenil is safer than Prednisone.

I started taking plaquenil when I was 12 and am now 44. For me I know it has helped keep the disease from progressing. It allowed me to go to college, get married, have kids, and lead a full life for the most part. I was also on prednisone for several years as a teenager. Since then I’ve tried cellcept, rituxan, and cytoxan. Cytoxan works best but my rheumy won’t rx it. I take provigil to combat the brain fog and fatigue, Trazadone to sleep, Sertraline for depression, and other meds sporadically. Eye issues with plaquenil are fairly rare according to my eye doc. My point to all of this is that there are many meds to try and don’t give up trying new ones. I know how tough college is when you have lupus. It took me almost 10 years to finish thanks to semesters off when I was ill. But I did it. Ironically I haven’t been well enough to put my degree to use but I’m still proud that I accomplished it. Hugs to you!

I think it is important that we listen to what Louters is telling us. No matter how effective in this person or that person, each drug is not effective across the board for everyone. We each have to make the tough decisions on what meds to take and which not to, and just like with the symptoms that vary WIDELY from one person to another, the decision whether or not to take a certain med is also going to vary. What works and is right for me is by no means the right choice for someone else.

Louters hon, I can't know what will and won't work for you, now much less in he future, but I wish you the best and support you in your struggle to find what works. Hang in there, know you are loved, and that I am pulling for you!

all I can say is DO WHAT WORKS BEST FOR YOU. For me its no doctors, and no medications its not the popular choice but it is what works best for me in my situation. You need to do whats best for you, I get it, 2 years ago finally I realized there's nothing they can do for me, all my organ damage and so on isn't reversible, I'd been battling this for over 20 years, so I just threw my arms up said enough was enough I'll do just as I please, and while my life's not great, its better than it was with all the medical on board, living my life the way I want is so much better than having doctors guess what might happen, and throw more pills at me that actually in some cases made other things much worse, now when things go wrong its on me, good bad or otherwise its all on me and quite frankly I don't mind so much anymore and it does not matter.

I am sorry that you are having such a problem with your decision. I was so much older when I was diagnosed with lupus. I have taken plaquenil for about 13 years now combined. I had a doctor take me off of it for some reason??? Then 3 years ago a flare came on like a bomb! I know that in the long run prednisone can be worse on the body. I do know that plaquenil made me feel so much better and I am still doing better. But that is my experience.

I really think that they will come up with a new drug soon that will be even better, as there is so much awareness now of lupus and all autoimmune diseases.

Hugs to you, Geneva

I take Plaquenil, but have come down significantly on the dosage. I had my eyes checked at 6 and 12 months, all good so no check for 5 years.
Having nearly died from Nephritis (how I was diagnosed) as well as having a stroke, I will take it for as long as I am told by my docs.
Prednisone does some pretty nasty things as well after long-term use.
I don’t think any of us would choose this, but like other diseases you sometimes have to fight with what is available.
I weighed the difference between 3 x week dialysis, dying or vegetative from the next stroke and a miniscule chance of changes to my eyes.
We all have to choose what is available, but honestly the arsenal is limited.

Most of the meds we take have severe side effects.The plaquenil doses are so low these days, according to my optometrist and opthamologist, that there's little danger of eye damage from the plaquenil. The doc that prescribes it still should be ordering an eye exam every year. And, yes there are infrequent cases of retinal damage. I think one group member here did mention she has it.

We all take prednisone and it has ten times the side effects as plaquenil. I was on 5mg per day for 14 years and developed cataracts, thin skin, osteaporosis and the like. The docs tried to wean me off by lowering it by 1 mg and my blood tests went haywire and the dose was changed back to 5 mg/day. I would be dead if it were not for prednisone and plaquenil.
I recommend that you don't risk any organ damage and take it. I was diagnosed with 3 autoimmune diseases at one time and my liver is very damaged due to lack of treatment. The autoimmune antibodies are real mean and have no hesitation about attacking any organ: lungs, heart, kidneys, liver, bladder, GI tract, brain, nervous system. These medications are a shield.

You got to hold on.

Plaquenil saved me too. I have a cataract n deteriorating hip (neucrosis) due to steroids.

Plaquenil helped me a lot for 20+ years, and then I got the rare side effect plaquenil retinopathy. Very rare, but not reversible, and my rheumy let it ride for a year by poo- pooing me. Next time I saw the eye doc, I quit taking it. Very little effect- my eyesight in that eye is a tiny bit diff from the other eye. I took the 6 month eye check seriously.It isn’t in my retina.
I had a huge side effect going on iplaquenil of tiredness, but I got through it
Frankly, if it didn’t help you in a year, it probably doesn’t matter whether you take it unless you have an emergency medical need for it. It helps most people, but there are always those who drugs don’t help, or who get weird side effect. Strange thing: my dad was in New Guinea during WW2 and was given quinine in a much worse form to protect him from malaria. I wonder if any of those guys. And I read a book

Book, State of Wonder, in which a woman is given some form of quinine to prevent malaria in South America and it makes her hallucinate and go quite loopy.

I have come to believe after several years that the trouble with my eyes is from the lupus not the plaquinal . I have a hard time getting on any new drug and have found I often need to tough it out . Plaquinal was one I didn't like and eventually tried again. It was then the mood swings settled down and the fog lifted . Don't want to be without it now. Use brand tho- not generic .


What did you find was the difference with the generic .Medicare won't pay for plaquenil. If I was convinces it was better I would pay.