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View Full Version : Plaquenil for a month & no relief :/



Mommyof1
07-30-2009, 12:18 PM
Hey all. I have been on Plaquenil and 500mg naprosyn which was uped from 375mg after 2 weeks because it didn't touch anything. I am still not getting any relief and in fact my rashes and this flare seem to be worse. I have been doing a lot of outside activities and having trouble resting due to insomnia and pain, not to mention my son was sick and had a high fever for 6 days and I had to get up at night to give him meds so he wouldn't seize like he has in the past. I am ready to feel better but it's not happening...I guess im just looking for someone to lend an ear and share their experience! Hope you all are feeling well. -Brittanee

Bonita
07-30-2009, 02:11 PM
It sometimes takes a couple of months to get good results with this drug. Hope you feel better soon and your son is okay. Love Bonita

dassar RN
07-30-2009, 04:26 PM
Hi mommyof1,
sorry that you are going through such a rough time. I just started taking plaquenil as a newly diagnosed lupie. It has been about 2 1/2 mths and I was told by my Rheumy that it usually takes 3-6 mths to show some form of change etc.
Hang in there my friend.:cute: maybe you need to discuss with your doctor other medication for pain.


Dassar RN

Pearl
07-30-2009, 05:02 PM
It can take some time for the Plaquenil to work, maybe up to six months. Don't give up on it yet. If it does work for you, there will be a noticeable change in how you feel. Fatigue should be less, joint pain should be less, etc. The outside activities may have something to do with your lack of relief thus far.

I know how hard it is to have children and to be ill at the same time. Rest when the children rest. It's very important for your health. Give yourself permission to let the laundry go for the evening. Leave the dishes until tomorrow. You will feel better after you get some rest, and when you do, you can catch up on the chores.

Take care,

Jana

pandagirl
07-30-2009, 06:01 PM
Be careful...the Plaq can give you a rash, so be aware..if it is worse, call your MD. Have they tried you on steroids to quiet the rash??

Leksie
07-31-2009, 05:57 AM
I started taking plaquenil in January, it has definately helped with fatigue, and joint pain for me. I really started noticing the difference in May/June so that was like 5 to 6 months. I hope it works sooner for you but don't give up on it just yet!! Good Luck

Mommyof1
08-01-2009, 12:28 PM
hey there. Yes I thought plaquenil could give you a rash and honestly mine have been more frequent. I get one everyday now and its been over a week. They have not put me on steroids yet because I dont have a firm diagnosis. They wont count my previous seizures as a criteria because they aren't sure if that is what caused them although I think it has everything to do with this disease. They wont even call it UTCD so idk. I read in a book though that if after 6 months the plaquenil has only worked 50% drs try to use methotrexate or a low dose steroid to help out. I am hoping to see some sort of change soon because I am very photosensitive to the sun and fluorescent lights and they are all around me in everything i do! I hope you all are well and thank you for your support :) -Brittanee

mountaindreamer
08-02-2009, 08:37 PM
hi brittanee,

it was after 5 months with little improvement with Plaquenil, that my dr. talked me into starting methotrexate....and i am amazed at the difference. I feel so much better. However, there are severe possible consequences of methotrexate, so really educate yourself before starting.

it works great for me at the present, but i don't know what will happen in the future. Therefore, i would never encourage someone to choose this treatment, it must be an individual decision....i just really did not want to do steroids....i don't fare well with them.

gina
08-03-2009, 06:52 AM
I just got the rx's and have to see the eye dr. before i start it. i tried several years ago taking it, but made me so sick couldn't stand it. so i stopped for i found out if was working.

i am going to give it another try because the fatigue has gotten so bad i spend the weekends in bed just don't want to move cause i forced my self all week to go to work and take care of my son i don't do anything those two days accept go to grocery store. and do laundry.

i am hoping it will help me. i done the research and it can take up to six months before you notice anything so hand in there at least until that time is up. good luck

Mommyof1
08-03-2009, 10:29 AM
I actually dont eat much because every time I eat I get nauseas from the meds it sucks. And Im always tired. I have the same symptoms really when I wasn't on the drug so I am having a hard time telling whether its from the meds or if Im just not getting better. I basically have a 3 month trial with it for now until I go see my rheumy again in sept. I am starting month two on it so well see what happens! Hope it helps you guys though! *hugs* and good luck! -Brittanee

mountaindreamer
08-03-2009, 02:06 PM
hi brittanee,

hopefully your nausea will stop very soon. Most of us experienced this reaction when we started plaquenil, and after some time, the nausea subsided....i hope the same happens for you.

Crabcakes
08-06-2009, 08:15 AM
I've been on Plaquenil for just two weeks and already I can tell it is helping! I could barely walk when I was handed the Rx, and I did have high expectations! (Mind over matter?) I've read a lot of people thought Plaquenil wasn't helping, until they stopped it. They could certainly tell the difference! The doc told me expect results in 6-8 weeks. Either I am in a natural remission, or the Plaquenil is beginning to help me.

I am searching for a small purple throne, upon which I will sit my pill bottle of Plaquenil. That's how much I think of this med! I even wrote to Dr. Vera Stecher-Levin, at Pfizer, to thank her for inventing Plaquenil! :yes:

Sadly, some people do not respond to it, and need Methotrexate or other meds. For now, Plaquenil is helping me. I have a stash of steroids in reserve for flares!

crmj1183
08-06-2009, 10:41 AM
It might just take a little longer to get in your system, it will work dont worry I was on plaquenil for about 6 yrs, I dont ake it anymore. Im sorry you're feeling badly. I hope you get relief soon.

Chriss

MicRoMediC
08-12-2009, 03:26 PM
I have been on it almost five months now and am just now starting to feel relief. I can tell now when I wait til later in the morning to take it, I feel a little more energetic after I take it. I am also on Mobic for the pain and LOVE it. I can definitely tell the difference when I take that. Best of luck to you. Hopefully it'll start working for you soon.

Danica01
08-12-2009, 06:42 PM
Just hang in there and be patient. I really do hope it help you in the end. Every little bit of relief we can get is wonderful! I am sending you thoughts of a pain free night and lots of gentle hugs :hug:

Mommyof1
08-13-2009, 12:10 PM
First off thank you all for the support and stories. I feel better as far as stiffness in the mornings a lot compared to before however I am still having some pretty bad days and still having my usual flares which luckily this one is starting to end but i still have ulcers and rashes and some pain. My knees were actually giving me more problems than before with puffiness and pain. It made it uncomfortable to walk and ice for an hour didn't help but seemed to make it worse! I thought the headaches had gone away but it has recently been a lot of pressure especially in my temples which makes them sensitive to touch. Today though it is a headache which wont go away. Its not horrible though so I am dealing. I also now have to go see an allergist because my nasal steroids are not working...I know they probably want to try allergy shots but I have read they are not good for lupies so I am going to say something. Maybe they will give me oral pred and nip everything in the butt huh? lol Other than that I am going to see my neuro soon and get a nerve/muscle study done and get some neuropathic meds for the burning pain. I hope you all are doing well and your meds are working! *hugs* -Britt

mountaindreamer
08-13-2009, 06:14 PM
hi brittannee,

just checking on you....hope the plaquenil is starting to work, at least hopefully the nausea has stopped....so sorry you are having such problems.

Mommyof1
08-17-2009, 01:43 PM
hey there. Actually the nausea seemed to stop some but now its almost like it has come back. I at least have a lil better appetite though. I have been having more headaches, one everyday this week. Its either pressure or pressure and pain. I have to keep taking excedrin migraine. My dr is out on conference till wednesday so I will opt for a ct to check out the mastoiditis I have in my brain. I feel a lil better but still having pretty much all my symptoms. I hope you all are well! *hugs* -Britt

Faith
08-17-2009, 11:56 PM
Have you taken Plaquenil with dinner? I tried and it helped a lot. Also, if you need relief, I would suggest a kenalog shot as this bypasses your organs unlike it's sister pill Prednisone. If you don't ingest it, your organs do better.

I hope you feel relief soon. It took about 9 months to a year for me. Everyone is really different. Hang in there.

Take care,

Faith

scarby
08-18-2009, 01:27 AM
It has been 3 and a half months for me and I haven't had any relief yet. I've been told it could be many more months.
Hopefully it will start giving you some relief
Take care

lori5454
08-18-2009, 02:44 AM
Hello there, I just joined our group today. I do know from my experience with plaquenil,after having lupus for 11/2 years that when put on plaquenil I experienced help with joint pain within weeks of using it but I developed purpura on my arms and started having problems with bleeding from my arms. My doctor took me off of it immediately. I was then put on methroexate and I was on it for 3 months and I really got sick, every one is so individual with these meds,I ended up getting back on plaquenil and I broke out on my arms again immediately but it helped the joint pain so much and the chronic fatique that I decided the rash was worth it. Sounds like you're getting a lot of good advice, you will find out in time what works for you. Your new friend, Lori Carson.

mountaindreamer
08-18-2009, 06:00 AM
hi lori,

welcome to our "family of the sky". You will find a wealth of knowledge here, and lots sof compassion.

We have a thread in the "lupus medication" section where several of us who are methotrexate have a little fun and support.

Please make yourself at home, and join in our discussions. We handle the difficult business of learning to live with lupus, but we also have a little fun along the way.

Angel Oliver
08-04-2010, 05:04 PM
Just bringing this forward for a member to read through:)x