What specific benefit have you reaped from Plaquenil?

[Navigator]

I have been on Plaquenil (generic) for 1 1/2 years and have seen my muscle/joint pain go away, my neuropathy in my foot and arm go away, my eyes and mouth get back some moisture such that I do not need eye drops except at night...and the mouth is holding its own with minimal Biotene ...I am less tired...I have less brain fog...I have not had a flare...but most important...I just got my blood work done and all of my inflamation levels have improved...some are now normal.  Amazing.

In terms of side effects I too have some ear issues, but other than that nothing.  I go to the eye doctor every six months.

I think it is worth a fair try.

[lxsoren]

I have been on Placquenil for over 2 years, with no problems.  I have eyes tested annually, and there has been no sign of problems.  Feel much better with Placquenil (less fatigue, sore joints, etc.)  I would not go off of it, and my rheumy won't let me go off!!!  I am on 400 mg daily.

[CAT1962]

My joints and mucsles seemed better but now not so much..may be due to taking a walk on Monday...?

[Kim]

I've only been on Plaquenil for 2 months.  So I guess it's too soon to see any improvement.  But I've been wondering this very thing.  Specific benefits that I might have.  My rheumy suggested that I may or may not see improvement, that the main benefit would be that it slowed the progression of Sjogrens. 

[mamak]

Plaquenil seemed to help the most with my dry eyes. Although they are still irritated, the severity is less. I have been on it now for about 9 months and am still having many of the symptoms I had before--extreme fatigue, swollen salivary glands, hoarseness, and sore throat. It didn't really cause any side effects so it is definitely worth a try. Just make sure you take it with food!

[Meld256]

I'm really encouraged by the positive reports here, and Navigator, your story IS amazing!  That is wonderful...

I felt I had to "fight" to get started on Plaquenil. Once I finally heard here about it's benefits, I asked my PCP in Jan. He thought about it a couple weeks before writing the script, because he's never tried it with a Sjogren's patient. (only his RA and Lupus patients)

 Once I got it, I had to wait 2 mths. to get into have my eye exam. Then when I was ok'd by my opthamologist, I lost my insurance through my work because I just retired since being approved for SS Disability. Finally got put on my husband's insurance (started that process Jan. 28)!! 

So...I was excited to FILL my script last week and get started. Took a 4-mth. process! That felt like such a victory in itself! I am sooo hopeful that it may help me. I've been at the point of disabling joint pain, stiffness and fatigue, not to mention pretty severe eye and mouth issues.  If this helps ANY of it at least a little, I will be a happy camper!!

[ohiolady]

Thanks so much!   This is very helpful and it seems Plaquenil helps fatigue and joint pain more than other symptoms.  It seems ear ringing is a common side effect.   I have to talk with my GI doc and my urologist.  I only have one kidney and I wonder how hard Plaquenil is on your kidneys.  I am surprised a few others wtih gastroparesis can take without stomach issues.

Thanks again.

Anna

[dbab]

Before Plaquenil, I was bed bound for the majority of the day from the time I got home to the time I woke up in the morning.  Many months after starting Plaquenil, I started gaining a somewhat normal life again, not the one I once knew because that was never to be again, but I was able to enjoy life with my family again and not be so overcome by the horrible fatigue that I experienced all the time. 

[buddybelle]

I am interested in learning more about the side effects of Plaquernil after long term usage. Also have clinical trials proven that it indeed slows the progression of the disease.
I ask because I am already on beta seron is proven to slow the progression of multiple sclerosis. Along with the other meds I am taking, I have done well.
I am so worried about adding new medicine to combat Sjs.

I mentioned it in an earlier post, but I have found the drug Providgil to be a life saver in combatting the disabling fatigue I have experienced with MS. So fatigue is under control; dry mouth and eyes, GI and lung problems aren't

The information on this site is very helpful, especially for someone who is new to the disease.
Thank you everyone for your posts

[olmphoto2]

I agree with those who have posted about the benefits.  This medication is known as a disease modifying one.  I have been off it for the better part of a month related to insurance switching difficulties.  I should be able to restart it today and I an SO looking forward to that.  I have more notable parotid swelling, decreased saliva and  tears, increased joint pain, muscle pain, brain fog, fatigue and depression.

I do expect that I may have some nausea with restarting it.  For me, unfortunately, initially it lasted many weeks when I first began it two years ago---but I am prone to that anyway.  In any case, I feel this medication is SOOOOOO worth it.

Also, for those concerned about visual effects: my ophthalmologist reports that he has ordered and overseen visual field screenings for thousands of patients who have been referred to him because they take Plaquenil.  In his career, he says that he has only seen two [I believe he said] who showed any effect from the medication.  He strongly urged me to continue with taking it as the risk is very low and the benefits often are remarkable.

[olmphoto2]

I also forgot to say that without Plaquenil my lips are so much worse these past several weeks and breathing not as good either.  Seem to have more gastroparesis also.

 

I agree with those who have posted about the benefits.  This medication is known as a disease modifying one.  I have been off it for the better part of a month related to insurance switching difficulties.  I should be able to restart it today and I an SO looking forward to that.  I have more notable parotid swelling, decreased saliva and  tears, increased joint pain, muscle pain, brain fog, fatigue and depression.

I do expect that I may have some nausea with restarting it.  For me, unfortunately, initially it lasted many weeks when I first began it two years ago---but I am prone to that anyway.  In any case, I feel this medication is SOOOOOO worth it.

Also, for those concerned about visual effects: my ophthalmologist reports that he has ordered and overseen visual field screenings for thousands of patients who have been referred to him because they take Plaquenil.  In his career, he says that he has only seen two [I believe he said] who showed any effect from the medication.  He strongly urged me to continue with taking it as the risk is very low and the benefits often are remarkable.

[LizPetillo]

I What specific benefit have you reaped from Plaquenil

I can get out of bed.
I can breath most of the time without loss of breath.
After 6 months I have more saliva.  Not a lot .. but more.
The burning in my hand is only there sometimes instead of all the time.
The polyneuropathy slowed it's spread.  It's still there, but not spreading as fast.

Prior to plaquinel the fatigue was so bad I literally could barely get from the bed to the bathroom and back into bed.  I couldn't freak'n breath.  I literally didn't have enough energy to breath.  Now I get short of breath sometimes, but it's not like it was pre-plaquenil.

This is a life saving drug for me.  Technically it's marked as not a life-saving /necessary to sustain life drug.  But that simply isn't true.  I could not breath without it.  I couldnt' move.

Edited to add ... those bizarre sjogrens skin rashes we all get are now MUCH less in intensity and frequency. 

[JudyCoppernob]

Hello,

I've been on Plaquenil since 2005 and have had no negative effects whatsoever.

Initially I was taking 200mg/day.  Last year that was increased to 400mg/day and I immediately slept better, had more energy, better brain function, no SOB, no tinnitus, no parasthesiae (pins and needles in hands, arms, legs and feet).

So for me it's brilliant.

Good luck!
Judy

[buddybelle]

Thank you everyone for your great information about Plaquernil. I didn't realize that there were so many replies until tonight. I think I am just figuring out how to use the site!

This is so wonderful.  It is great to have such a wealth of information at your fingertips! I stayed away from MS support groups because I heard more sad stories than real useful information.

We are all on this journey together and definitely need support. I also realize that there are times when we all need to vent or break down a bit. I am just glad to see so many people share positive, helpful tips!

THANK YOU EVERYONE! I will do my best to share whatever I can too.

[Meld256]

Hi buddybelle,

I'm glad you've seen the uplifting part of this forum. Yes, sometimes we vent and it just is a way of sharing a bad day. But for the most part you'll find a great deal of helpful information here and encouraging support.

Take care,
Melinda