Plaquinil - How long before it quits working?

[SassieCat]

I have read some of the posts that people build up a resistance to Plaquinil and it quits working.  I have been on it for 7 months now and the pain is coming back with a vengeance. 

How long have others been on it before it quit helping?

Sassie

[Linda196]

Sassie, I've been taking it for over 5 years now, with no loss of effectiveness. Of course I still have days when the joint and/or muscle pain are increased, but overall, things have calmed down.  Since my improvement has been very gradual, the best way I can explain it is, before Plaquenil, a good day (pain wise) was one that didn't go over 7/10, now an average day runs about 4-5/10, and what used to be my good day is now a bad one at 7/10. there are still episodes of 8-9/10, but since they aren't every second day anymore, I can manage much better.

[Scottietottie]

Hi Sassie 

I can't say I ever noticed Plaq doing much for pain. Maybe I'd notice if I stopped. With me it helped brain-fog and fatigue but the pain level never seemed to change. I've been on it over 5 years now.

Take care - Scottie 

[SassieCat]

It helped me with the pain and the fatigue.  At first I noticed that the fatigue lifted and I was able to get up and move around more.  Then I noticed that my pain level went way down.  I still have pain on a daily basis but not that bad that I couldn't deal with it.  Last night the pain came on.  It was mostly in both knees and my ankles.  The bain accompanied the burning and then it went into my back and shoulders.  Then I felt I had bugs crawling all over.  Usually a nice soak in the jacuzzi will calm things down, but that didn't help at all.  Finally I just took a pain and went to bed. 

I awoke several times today but I was still so tired and felt weak so I went back to bed and slept.   Now I am up and only ache in the right knee. 

Thanks for responding.  I was getting worried that if the Plaquinil quit what medicine would be next.  I am so tired of trying so many different medicines and worring about the side effects and long term damage some of them bring.   

[dbab]

Hey Sassie, 

You may just be in a flare which can still happen even while on meds (unfortunately).  Being on Plaquenil, when I'm not in a flare I pretty good, never the same old self before getting sick but I can function and do a lot that I couldn't do before.  When I got sick before getting a diagnosis and treatment, I could only go to work, eat, shower, and sleep and that was all.

[SassieCat]

dbab,

You're probably right.  Somehow I still can't get over the fact that the flare ups can come on without prevocation.  I keep thinking that there is a cause and effect to everything.  I just find a cause to why my body has flare ups.  I see my Rheumy Monday afternoon and I'll see what she has to say.  Maybe she can figure out if something is changing or not.

Thanks,
Sassie

[watoozie]

I've been on Plaquenil for over 4 years and I wouldn't want to try to get along without it!!!  It has helped me with pain and fatigue.  It took a good 4 months to kick in, but it has worked really good for me.  I had a bad flare last summer and a round of Prednisone, but the flare wasn't near as bad as I felt before the Plaquenil. 

[lynnmarie219]

I have been on plaquenil for almost 5 years now and don't feel that it has stopped working....and luckily I have had no side effects. The thing is...we are all so different in how sjogrens manifests itself  in symptoms and we also all react to medications differently...so there is no way to say how long it may or may not work. Its different for each of us.


I think it may be true as the others have said that you are going through a flare....if it continues though....talk to your rheumy for sure! I hope you can continue to take it, but if not, there are other medications out there that they may be able to use in its place.

Good luck to you....hope your pain subsides soon!

[auntbea]

I am on plaquinil, at first it made me very tired...
my pain managment doc said that I should build up a resistance to that side effect.  I finally have.. I was pretty looped.

I have bone pain, from an infection of the bone in my face. It affects my trigeminal nerve.. I have to say, I stuck with the plaquinil only because it decreased my pain more even than narcotics... so I guess inflammation in the bone and surrounding tissues are the due to inflammatory issues..

[SassieCat]

Thanks everyone, that is encouraging.  I would rather have a flare up (because I know it's not going to last forever) than to have to indroduce my body to a new drug. 

The pain is letting up some now.  Tomorrow I see my Rheumy and my dentist too.  That should take care of a few things.

Sassie

[Kirby]

I have been on PLaquenil for almost 4 months. I could tell the first day I took it that some of the pain/muscle aches were better. Just in the last few weeks have I noticed it coming back. Overall it is still better than it was before I started.
Kirby

[Nathan]

Plaq took almost 6 months for me to notice a major difference (then again, it's a slow change over time), and I have to say, looking back, it has done a huge bit for me. The thing is, it hasn't lowered the pain per se, but rather lowered the frequency at which I hurt. I don't have nearly as many "crash days," where I'm stuck sleeping/tired all day either, so it has helped the fatigue considerably.

[SassieCat]

It seems that because the medicine was making me feel so much better on a pretty consistent basis, that I assumed that it would always work.  You are all right, the SjS waxes and wanes and somedays I will still feel miserable.  I am planning to go back to my Tai Chi classes starting next week and the stretching will do me good.  I was also going to look into some water/aroebic's in a heated indoor pool.  I could never do these when I was working because of the hours that I worked didn't coincide with the class schedule. 

Doctor said I would have bad days too and to keep taking my plaquinil.  If the dry mouth persists she will give me a script for it too.  Right now I just need to remember to drink lots more water.

Sassie