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Old 05-15-2012, 07:53 AM   #1
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Do you still have joint and muscle pain on plaquenil?

I've been on plaquenil for 6 months now and I still have significant joint pain! I can't say that the drug has helped at all, but it is difficult to compare todays pain with that of 6 months ago.

I still get extremely tired for days on end. Still get mysterious rashes, fevers and other odd symptoms.

I have gained nearly 25 lbs now and I can' t stand it, but when I try an dexercise it is as if my muscles just will not relax, the are tight and it hurts to even do the lightest yogo!

I am coming off of the cymbalta. I took 60mg for a year and only 30 this past month. I am now taking 30 every other day... but still no change in my mood or my weight! (BOO) ..

After being so glad about having a rheumy that listens I am almost afraid to go in and say "its not working" for fear she will say.... "then I can't help you.. bye"

And I did something incredibly stupid last month. Asked my primary to check my thyroid after taking a bovine herbal thyroid med for 2 weeks. NOw if my thyroid isn't working I've hidden it from my dr... don't know what I was thinking but my thyroid showed 1.59 (0,47-4.68)... Dont know what I should do about that... ugh!!

Any ideas folks?

HOpe this finds you all feeling well!! !

 
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Old 05-15-2012, 07:57 AM   #2
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Re: Do you still have joint and muscle pain on plaquenil?

Oh one more thing. I have a lesion on the palm of my left hand that has been there for over a month and I believe another is starting on my finger of the same hand. I get these pimple like bumps on my hands also. They come from nowhere and usually just one or two at a time. Very painful but dont' last long really.

 
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Old 05-15-2012, 10:29 PM   #3
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Re: Do you still have joint and muscle pain on plaquenil?

I haven't got a diagnosis of Lupus, they've just said some sort of connective tissue diseases/inflammatory arthritis. I've been on Plaquenil for 8 months.

At about 6 months into it, I didn't think I felt any better but then began to get REALLY nauseous. I ended up in ER with dehydration. They thought it was a gyney issue, and said "well Plaquenil causes nausea so come off it". I saw a rheumatologist who said "no the nausea is at the start before you get use to it etc, but just come off it for 2 weeks to 'prove this doctor wrong'". So I did and my joints flared (and my nausea got worse) and I felt terrible (fevers, rashes, mouth/nose ulcers, fatigue). Then they worked out it was my liver causing my liver and that I could go back on Plaquenil. Well, within 3 days my non-liver symptoms were way better.

Since then I've had one flare up of my hips and finger joints, which lasted for about 2-3 days (typically my flares last a few weeks). For the last month my joints have been AMAZING. I'd say they're 90-95% better than this time last year.

I'm sorry that you're not feeling better on Plaquenil, but stick it out. Maybe try taking a break from it? I've read of one rheumatologist recommending a 2 week break from Plaquenil every year to keep it effective. I haven't read or heard that much about whether that actually works. But it seemed to work for me when I came off it for the 2 weeks. Or maybe you also have Fibromyalgia? I have also read that you don't get the full effect until you've been on it for 12 months. Or perhaps it's not strong enough and you need another medication?

Good luck!

 
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Old 05-16-2012, 02:43 PM   #4
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Re: Do you still have joint and muscle pain on plaquenil?

When I started Plaquenil, my rheumatologist told me it would take 3 months to reach its full effectiveness. I am on 200 mg twice a day. I really believe it has helped with my muscle aches very much. If I have an extraordinary amount of muscle pain from time to time, I take Flexeril. That also works very well for me. I hope you can find something to relieve your aches and gain your energy back. Another thing my rheumatologist told me, to get my energy back, was to rest BEFORE I actually get tired. Even 20 minutes of resting throughout the day if you can. I could not do that when I was first diagnosed with lupus as I worked in an office; however, I have worked from home for several years and find that resting before I get that full-fledged fatigue works well. I hope this has been helpful for you, and I wish you the best.

 
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Old 05-16-2012, 06:28 PM   #5
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Lightbulb Re: Do you still have joint and muscle pain on plaquenil?

I was on plaquinil for almost ten years and never experienced a day of relief until about six weeks after I stopped taking it, which is about how long it takes to clear your system. If your doctor is reluctant to re order tests or consider another diagnosis, I would ask about Benalysta, the new lupus shot. you have to be on a lupus med to get it (thus why I do not recieve it) but it may help. I currently use tumeric, tart cherry juice, and mangosteen for anti inflammation. I rarely experience joint pain and it even helps with skin/hair.

 
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Old 07-08-2013, 07:45 PM   #6
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Re: Do you still have joint and muscle pain on plaquenil?

Hey,
I had mild joint/leg muscle pain and diagnosed with lupus...ive been on plaquinil for just 2 weeks (turned down evil steroids), but i think my joint pain has gotten worse in this last 2 weeks...

 
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Old 07-09-2013, 12:40 AM   #7
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Re: Do you still have joint and muscle pain on plaquenil?

I have been on Plaquinel for 2 1/2 years. About 9 months into it I thought it was not helping so I quit and it took about 2 months and I remembered why I started it. I got back on it and have never stopped again. I have been sick for almost 6 years and was diagnosed with Connective Tissue Disease/Inflammatory Arthritis and told it would not be called Lupus until it affected an organ. Last year I was diagnosed with COPD-Chronic Bronchitis. Even though I take the plaquinel I have many really bad days. I have extreme exhaustion (way beyond fatigue these days). Pain in my joints and muscles that often make me lay down and cry but I also in January herniated a disk in my neck and have severe pain in my shoulder, down my arm and into my hand. The only difference in my shoulder and hand pain is that I get sharp stabbing pain and numbness and tingling down my arm. Other than that the pain I have in my legs and other arm are just as bad, I am now on Percocet, Neurontin and sometimes flexeril (this is of coarse for the neck injury). It helps for all my pain for a short time. The only thing that really relieves my pain and makes me feel almost normal are those (EVIL STEROIDS) which I love more than anything these days. I get bronchitis often and get to take Predisone and I want to take it every day for the rest of my life. I am at the point where the pain and exhaustion are so miserable just let me feel good until it doesn't work and let me go. I am not even counting the mouth sores and feeling that my tongue and roof of my mouth are burnt all the time and what I consider the minor issues of this disease like a rash here or scalp itching, hair falling out. I can ignore the tiny things.

Sorry back to the Plaquinel I did not realize how much it helped until I quit taking it for 2 months. I did not feel an increase for that long and all of a sudden BAM I was like OMG I so forgot. I think what happened is stopping caused me to go into a flare but even on it that happens. Overall I think it helps but it is not a cure at least not for me. I have keep taking it daily because both my Rheumy and my regular doctor say it can keep me alive. I think it helps slow down the disease and especially it attacking organs so probably helps even on things you do not realize. I am not trying to be negative but I am getting to the point where do I want to slow this down and prolong the torture?

I personally am at the point of give me steroids to keep me feeling as good as possible while I can and when I can't anymore - I will take a morphine drip and let me go peacefully. I am the type to believe in quality over quantity. I am no longer able to work - partly because of the neck disk but I was not making it most days before that happened.

When I look back on how my life has changed so much over the last 6 years I can not believe it. I use to be such an active on the go type person. Now most days I do not have the energy and I hurt to bad to take a shower. How can taking a shower be such an over whelming task? Anyone else out there feel that way.

I have not gained weight on plaquinel. I am 50 and when I was 35 I started taking prozac for panic attacks which I had daily for many years and I became completely symptom free and have been for 15 years now but I gained 40 pounds the first 2 years. I quit taking it and 3 weeks later I was driving and got a panic attack so I said I will work with the 40 pounds. I now take effexor which also keeps the panic attacks away but has a nasty withdrawl if I forget to take it one day. It does help my mood though especially irritability I have with going through menopause.

I am sorry did not mean to write a novel but I will continue the plaquinel. I am not sure your doctor would agree but you could talk to them about stopping for a time and see what happens. That way you might find out if it is helping you or not. Remember it took 2 months before I noticed just how bad I was not taking it and I was also still getting steroids shots once a month when I first started and they weaned me down. I now only get steroids when I have bronchitis or once in a while they will give me a shot if I am in a bad flare up. Hope this helps.

 
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