Is anyone taking this? Does it work? What are the side effects? Did it affect your eyes? Cathy R.
Hi Cathy...welcome!
I've been taking plaquenil for about 14 years now. For me, on it's own it did nothing. I eventually stopped taking it then went to Methotrexate. The methotrexate eventually was increased over time, then my doctor suggested we add the plaquenil back and it actually helped.
I haven't had any problems with my eyes. My doctor said that the problem associated with the eyes and plaquenil was VERY rare. But you do need to have your eyes checked regularly.
Read the post "Stopping Plaquenil" posted by Jayaz there's a bit more information there.
Kelly
Hello Cathy! I was started on PLQ. 2 years ago and cant say that it did much, I stopped taking it in Jan. '06, and havent really gotten better or worse. I agree that PLQ and another med would probably be better than PLQ by itself. It also took about 6-8 months (they said) for it to really work, so if you just started, it could take some time to notice any difference.
It is Very important to have your eyes checked, even though the side effects are rare, you dont want to be THE one in one thousand that has trouble!(and your DR. will frown at you at your next appt. if you dont have them checked)!
Good Luck!!!
Desertchild
Plaquanil was the first med they put me on after the prednisone. I'm still on it in addition to pred, metetrexate, folic acid and enbrel so it's hard to figure out which medicine is really helping me. In the beginning plaquanil made me very dizzy and produced some visual disturbances. I walked into a few walls before I adjusted to it. It evidently didn't do enough because the doctor added all the others. It's been around for a long time and is also used for malaria. I think it is relatively safe. Thank you for writing. I see my eye doctor again on Friday. Cathy R.Hi , my doctor wants me on plaquenil . I am worried it will make my hair thinner. Has anyone had hair loss with this medication? Also if medication is not taken will it make any difference with progression of this disease or does plaquenil or other medications just help to make life more comfortable?
Thanks...liz
I was on plaquenil for a month and didn't notice any hair loss but did notice definte visual problems.Plaquenil held off my joint damage for five years and it wasn't until I cut the dose in half on my own did I start to get joint damage.
I am one of those like you Leslie, who tends to self dose. I am glad that you mentioned the joint damage you experienced after decreasing your meds. Some days, I wonder if the medication is really doing anything or if I would feel the same with out it. I think everyone has days when they debate about whether or not they should be taking the meds. I think your experience is important for us to keep in mind when our doubts arise.
Liz
I think there a a lot of seronegative RA victims.I was negative for 8 years and finally the blood work turned up positive at which time I was formally diagnosed with RA and Sjogren's .Before that the diagnosis was OA and fibromyalgia which I still have. I think you need to stick with a good rheumatologist until they figure out what's going on with you. A lot of the medications are good for a varity of arthritisi(Spelling?).It doesn't matter that much what label they put on your illness. What has helped me as much as any of the medications is an exercise program. I know that's probably the last thing you want to do but it's really helped me. You need to have someone(doctor, or PT) guide you through a gentle program that you can do on your own. I notice you say you are overweight. It will help that too, but primarily, it will keep the joints moving and produce endorfins which will make you feel better mentally. I just did gardening which I know I will feel the repercusions from tomorrow, but I feel so much better mentally.Good luck.
Thanks Linda, I need to exercise and I will start. I have a free membership to Gold Gym so should go. I went once a few weeks ago and I did feel much better so I need to stick with it since I just found out about the RA. I appriciate your email...Liz