Author Topic: What specific benefit have you reaped from Plaquenil?  (Read 9334 times)

ohiolady

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What specific benefit have you reaped from Plaquenil?
« on: May 03, 2011, 03:54:37 PM »
I know there are many threads on Plaquenil but I want to ask what specific benefit have you experienced from taking Plaquenil?  Also, what negative side effect have you experienced.

My rheumy kinda flipped today over my parotid gland swelling and is now pushing Plaquenil.  The thing is, I've had parotid pain and swelling since the onset of Sjogrens.  It is just today, it was noticeable to her.  I am seronegative but I could tell today she feels certain I have a REAL autoimmune illness.  The gastroparesis has contributed to her concern.

I am hesistant because I've not heard anyone say it helps with parotid swelling, dryness, brain fog, gastroparesis and these are my main symptoms.  I am med sensitive and dread the thought of another med.

Thanks for your help.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

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SueAnn

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #1 on: May 03, 2011, 04:35:13 PM »
The most noticeable benefit of Plaquenil for me  is with joint pain and fatigue which were horrible before I started on it.   I know that it also slows down the progression of SJS so that is a major benefit. 

The side effects that I had were minimal, but I have worse ringing in my ears now than I had before.  When I first started it I was very dizzy for the first 3 to 4 weeks with some stomach upset, but that is now gone.

I hope this helps,

Sue Ann
Sjs
Cellcept, Plaquenil, Evoxac, Prednisone, Restasis, and Tramadol.
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Joe S.

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #2 on: May 03, 2011, 04:39:26 PM »
I learned that if I take it, I go blind. So I do not take it.
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LizM

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #3 on: May 03, 2011, 05:13:05 PM »
I have been taking it since last summer.  I still have pretty painful joints, but now the total body exhaustion has eased.  I don't know how painful my joints would be if I stopped taking it, though.

Liz

Kerrikins

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #4 on: May 03, 2011, 05:45:01 PM »
The only difficulty i have with plaquenil is if i take it in the day i get a headache. So i take 400mg at night now and dont get the headache nearly as often as before...The most obvious benefit plaquenil has had for me is with my joint and bone pain. It was unbearable before taking the meds. My parotids are worse now than they were before I was diagnosed, but who knows, maybe that would be unbearable now too if I weren't on the meds. Fatigue, hard to tell. I think anyone with 4 young kids is going to be exhausted! I do think though that it has improved my digestive system. I used to have allergic reactions to foods all the time, and now I can eat many of those foods again with no problem. I think the plaquenil made my system less permeable. I think plaquenil gets a bad rap, true some people can't tolerate it but most can with no problem. It's a mild drug and can be taken your whole life, and it can slow your disease progression. I would at least give it a shot. Good luck!

Scottietottie

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #5 on: May 03, 2011, 06:10:43 PM »
Hi  :)

Plaquenil seems to helped with both fatigue, brain-fog and energy levels. I also take it because it is meant to slow down progression. My bloods went from positive for lupus to negative and my rheumatologist says that it shows the Plaquenil is working. I've had no ill effects.

Take care - Scottie  :)
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prunella

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #6 on: May 03, 2011, 07:21:50 PM »
Less fatigue, less achy joints and bones. Brain fog, not sure.  Still have a good amount of inadequate brain function, but that is not new!
Initially, (4 years ago) I may have lost weight, Have gained it back.
No adverse effects that I can identify.

beth aka/prunella
Age 61; Blood type 0-; Sjogren's Dx 2005, sero-negative; plaquenil, 200-400mg/day; lunesta; vivelle dot; omega3, 4gm/day; CoQ10;  vit D3. Wheat free; dairy free. Homeopathy and acupuncture help enormously.

Unicorn

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #7 on: May 03, 2011, 07:29:02 PM »
I'm actually WORSE on my Plaquenil than I was before. I've spoken to my doctor and we're going to try something else, but I'm back on Mobic for now...

The side effects were so bad for me I really couldn't stand it. I felt very weak and sick. Something I don't normally feel at all! I also LOVE to eat. I'm almost constantly snacking on tasty things (baby carrots, fruit, yogurt.. I'm a vegetarian), but on Plaquenil I couldn't eat at all. Everything I put in me made me very sick to my stomach. I was running to the bathroom constantly and I'm sure the lack of food staying in my system didn't help with the weakness and the usual fatigue seemed way worse.

I've been off it for a week now and I'm already feeling much better. It was never going to be a permanent solution for me anyway as my doctor was worried about my vision unnecessarily deteriorating since I'm so young. Oh well.

Don't let this scare you, though! I know it's worked for A LOT of people and done wonders for them. At least try it out and see how you do. :)

Jellyb

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #8 on: May 03, 2011, 07:48:16 PM »
I have been on the plaquinel since Feb. I noticed that my phantom rashes have disappeared and that could be from the plaqu. Or it could be that I have eliminated grains, except rice occationally. My very tender and sore lymphnodes under my arm have gotten a bit better, but not entirely. My eyes are less dry, but that could be the restasis. My achiness has improved, but that could be that the weather is warming.

So, to sum it up, basically i am of no help to you at all:-))
But my rheumatologist just upped my plaqinel so i am going to gradually increase my dose slloooowwly ( at the recomendation of a member here) and i will post if i am seeing any additional benifits.
Primary sjogrens, Raynauds.
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Carebear

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #9 on: May 03, 2011, 08:09:19 PM »
Hi Anna,

I've been on Plaquenil for five months.  I've seen some improvement in my fatigue, all the vibrating in my feet and legs has stopped, and my thinking is clearer.

For the first few days I had some GI problems, but they were minimal.  Eventually I have had to cut back my dosage because the Plaquenil made me feel nervous.  But I still feel better, even on the reduced dosage.  And I know longer feel like I have my finger stuck in an electrical socket. :P

I don't know if you will recall this, but I had my initial neuropsych testing done last summer.  Well, my neurologist has ordered another test for June to measure subjectively the change (I hope) in my cognitive functioning.  I'm looking forward to the results. ;)

« Last Edit: May 03, 2011, 10:56:37 PM by Carebear »
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Nancy60

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #10 on: May 03, 2011, 08:44:27 PM »
I've been on Plaquenil since around 2005.  Initially I had some nausea but that got better within a few weeks of taking it and when I started taking it with my meals.  I also had ear ringing and stopped it for awhile - we were never sure if it was due to the Plaquenil because it didn't get better when I stopped it, but it did eventually go away after about 6 months. 

Unfortunately all my symptoms flared when I went off of it so I decided to try it again after about 10 months.  No problem with ear ringing or nausea this time around and I have been on it for about 4 years now this time around. 

It has really helped with my joint pain, fatigue, skin rashes, and my eyes aren't as dry and my ANA and SSA have decreased, my sed rate is now normal.  I didn't notice as much improvement with my dry mouth so went on Evoxac and that has helped tremendously for that. 

I haven't had an issue with parotid swelling,  brain fog, or gastroparesis so I can't comment specifically about these, but my understanding is that Plaquenil slows the progression of the disease so decreases the damage the autoantibody complexes and inflamation do to various organs/systems.

Good luck with your decision and let us know what you decide and how you are doing. 
Nancy 

If you are med sensitive you might want to start with 200 mg initially and if you do OK with that, then increase to 400 mg which is they usual dose.  And be sure to take it with food!


Dry1000

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #11 on: May 03, 2011, 09:35:52 PM »
Before Plaquinel I had horrible dry mouth, even with evoxac. After 6 months of it, the Saliva is back and there are days where I don't need to take any Evoxac.  Cons - I do have ringing in my ears, but it's worth it.

BonusMom

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #12 on: May 04, 2011, 12:15:51 AM »
It has helped with fatigue and unbearable foot pain.

As to stomach upset, I've not experienced any abdominal problems whatsoever with taking Plaquenil and I take mine all at once, in the morning.  If you decide to take it and have tummy issues, do as some suggest and take it with food

COLLYGIRL

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #13 on: May 04, 2011, 12:22:57 AM »
I took plaquenil for six months, did not notice any improvement so rheumy discontinued.  I now take prednisone daily which seems to help with joint pain and fatigue. 

cremer

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Re: What specific benefit have you reaped from Plaquenil?
« Reply #14 on: May 04, 2011, 07:54:30 AM »
Been on Plaquenil for 9 months and it has eased my joint pain, fatigue, mouth ulcers, and brain fog.

Male 48 yrs old
PSjS (Positive SSa & SSb ANA 1:2560, Possible Fibromyalgia and CFS, Triple heart bypass Feb 2011, IBS, brain fog, joint pain, mouth and nose ulcers, paronychia, headaches, fatigue, Very low WBC count.
Medications : Aspirin, Plaquenil, Bisoprolol, Simvastatin, Isorbide  Mononitrate