Hi, for anyone that's been on plaquenil long term (i've been on more than 2 1/2 years), have you had any moderate to bad flares or flares that dont' seem to go away while taking this med? Or has anyone found that plaquenil stopped working after some time?
I've been in some sort of flare for 6 weeks now and it's been slowly getting worse (though not the worst i've had). It is thought that I have lupus & I've been diagnosed as such but I'm beginning to wonder.
I have also been on Plaquenil for about 2 1/2 years. I have Lupus and Sjogrens. I have had a bad flare for about 3 months, doing some better now, but I also wondered if I wasn't back sliding. I felt so much better for a little over 2 years. I hurt so bad and am so tired and weak. I have to force myself to get anything done. My best work is sitting on the couch. lol Hope you get to feeling better. I don't see my Rheumatologist until Oct. if I can stand it that long.
I'm new here though I have lurked for years! I have been on Plaquenil 200mg BID for about 7 years now and before that I was on Chloroquine for about 6 years. I have never been in remission in the whole 13 years since my diagnosis - I live in a constant 'flare' though before I was on all the meds that I am on now it was definitely much worse, sometimes my rheumatologist would actually have to remove some of the water/swelling from around my knees with a huge needle just so that I could bend the joints! I haven't had to have that done in the last 7 years Thank God. The Plaquenil I believe, builds up in your system before it works. I'm not sure that it wouldn't be at full strength by 2 1/2 years though.
Possibly you need some other meds to aid in getting the lupus under control, these are the ones that I am currently on along with the plaquenil:
prednisone 15mg daily
naproxen 500mg BID
methotrexate 6 pills once/week
ranitidine 150mg BID
Folic acid 10mg/daily except MTX day
demerol as needed for pain
percocet as needed for pain
flexeril as needed for neck and back stiffness
baclofen as needed for neck and back stiffness
and of course, with all those meds in my system, I also take labetelol 200mg BID for high blood pressure, ativan at bedtime to get to sleep, and most recently Zoloft for depression.
The good part about taking all these meds though, is that I can work full-time even even with having no remission and always 'flaring'. I also was able to have a baby last year (with alot of help from alot of great doctors and an excellent peri-natal and NICU hospital unit) and, I am raising him myself. I can't even imagine what I would be like without the meds, probably incapacitated.
So I think that your doctor just needs to get you on the right combination therapy - perhaps you need something else along with the plaquenil?
Thanks for the replies. At least from both of you, it does seem this can happen. Since i've been on it, this is the worst flare i've had, though it's still not as severe as before I was on any meds. I have been put on pred in the past for a severe flare & tapered off over 8 months. I've also been on Celebrex and right now I'm even taking percocet & skelaxin due to my spine problems. I went to a walk in med center b/c of waht I think were more herniations. But its not really helping my nerve pain, though my spasms are suddenly less. The painkillers are definitely not helping my ankle nor other joint pains & stiffness. Guess I'l just have to wait til next week to see what the rheumy thinks & if he gives me something else.