Plaquenil questions.

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Cat111
Veteran Member


Date Joined Nov 2010
Total Posts : 571
   Posted 8/5/2011 9:28 AM (GMT -6)   
My doctor has prescribed Plaquenil.    He did not give me much of an explanation about the med's side effects --- other then the possible and rare eye issues.
 
I will certainly see my eye doctor-- and will do what's necessary.
 
However,  I have read anecdotal 'stories' on various chat sites that suggest that Plaquenil can cause major hair loss.  YIKES !!!
 
I have beautiful hair and don't want to suffer thinning hair on top of everything else I'm dealing with.  Should I be worried ????? 
 
Also....I know there is such a thing as Plaquenil Toxicity, and that dosages should be considered (to avoid toxicity) according to a person's size and weight. 
 
I am a 5'4 female.....and weigh 116 lbs.  Is 200 mgs 2 X day too much?
 
My other concern is that I will LOSE weight on Plaquenil--- and I can't afford that!   Does it always cause weight loss?
 
My doctor did not express to me that it will take many weeks or even months for the Paquenil to even kick in.  This is something I learned through research.  
 
So...... I am seriously worried that I'll be blind and hairless and skinny as a rail before it even starts working !!!!!   smhair LOL 
 
This med obviously scares me! 
 
BTW....I do not have Lupus.  I have Lyme Disease and am not in a terrible amount of pain. My doctor just thought the Panequil will break the lupus/fibro like pain cycles I am having......and will help me get on with my life.
 
Any thoughts on Paquenil will be GREATLY appreciated !!!!
 
Thank you soooo much!  
 
 
 
 
 
 

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 8/5/2011 11:46 AM (GMT -6)   
Hi!
Plaquenil seems to have a good reputation, I researched it after my new rheumy prescribed it even before he wrote lupus as a diagnosis. He said it is preventitive for down the road and prudent to give it even before lupus has been ruled in. I was so very sick, and then, within a week, yep a week, I felt better. I have a cousin who is a pharmicist. GI distress seems the biggy, but for me, Plaquenil and Neurontin were a miracle cure. They kept me working at a job I loved for over 5 years. My hair was being lost d/t Hashimoto's and I have an iron gut. So a vague and brief nausea and occ. diarrhea was worth the lessened joint pain. Neurontin really helped the burning and tingling in my extremities. I don't ever want to stop taking it. On a funny note, I havent had a mosquito bite since I started it. They will land on me, stick in their probiscus thingy, taste........ and leave. No bumps no redness and my rotten husband says........hmmnnnn tongue
suetoo
ps. my rheumy is really strict about the eye damage risk, and I see an eye dr. for medical exam every January before he will send in the new prescription.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/5/2011 8:06 PM (GMT -6)   
I've been on it for two months now...no hair thinning...not tummy trouble...no weight loss (acutally gained)... eyes doing good.
Joy

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/5/2011 8:56 PM (GMT -6)   
I've been on plaquenil since 2002. No weight changes, no hair changes, no stomach issues, no eyes changes...
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/5/2011 9:20 PM (GMT -6)   
I have been on it for years. I noticed a few more hairs in the shower than normal for the first few months but not enough to notice anything on my head.
For me it caused food aversions and weight loss but I really needed to lose weight so went ahead and took the plaq on an empty stomach.
Eat a full breakfast with carbohydrates right before taking it and the stomach and appitite thing won't be as bad.

prafmm
New Member


Date Joined Aug 2011
Total Posts : 1
   Posted 8/10/2011 1:55 PM (GMT -6)   
I have been on Paquenil for the last yar and half with very minimal side effects. Treatment is for Lupus, Sjogren's and Hashimoto's. The muscle aches and swelling were reduced dramatically when I went on the Paquenil.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 8/13/2011 1:41 PM (GMT -6)   
Hey, plaquenil did the opposite for me. HAIR STARTED GROWING BACK after about 4-6 weeks on it. I prefer the brand name and not generic. It was easier on my stomach. Almost all drugs have side effects, you just have to see if the benefits outweigh the side effects. Do get your eyes checked, that's the most impt. thing. I am the side effect queen and I am ok on the name brand. Good luck to you.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, cozar for high BP gave me bad joint pain,
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed ra

Cat111
Veteran Member


Date Joined Nov 2010
Total Posts : 571
   Posted 8/13/2011 2:39 PM (GMT -6)   
Thank you all sooooo much for the replies !!! 
 
My mind is greatly eased but I'm still debating whether to take the Plaquenil or not.
 
My muscle/burning pain is so random with its timing.  Most days I feel great/normal.....and on others only mild discomfort.  
 
Then there are the occasional times (maybe once or twice a week) when the pain is quite, well,  painful.....but it's never over the top where I'm prevented from doing anything.  It's really more annoying than anything else. mad
 
Of course I'd like to be pain free 24/7/365  !!!! 
 
I'm due for an eye exam anyway.....so IF I'm good to go, the option is always there to try the Plaq.  .... the name brand.  
 
Besides the side effects which do seem very minimal-- I'm worried that the Plaq will 'cover up' my Lyme symptoms and then I'll never know what progress I'm making with my antibiotic treatment.  
 
I just don't want to take a bandaid drug.....one that isn't meant to cure, but only to manage.   However, management might be the way to go!   tongue   
 
Pain is still pain....even when it's mild....and I don't see an end to it any time soon.  
 
Best to all !!!!    
 
 
  
 
 

LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 8/25/2011 11:22 AM (GMT -6)   
Hi Cat!
 
You sound like me. The burning pain is random, it comes and goes through out day and night. Also some days I feel fine while other days I do not. This is why like you I am debating filling this script. However I went to a PC doc yesterday and she said it was very important I try it. She said it will help with fatigue and inflamation which is constent for me.
 
 

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/25/2011 12:52 PM (GMT -6)   
Plaquenil is *disease-inhibiting* for Lupus -- this means it helps keep your disease from getting worse.

Many of us who take it don't feel like it is doing anything, but then we stop taking it and have HUGE flares.

And yes, it helps with fatigue and inflammation...I really recommend you try it for at least 6 months before you make a final decision.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 8/25/2011 5:08 PM (GMT -6)   
My doctor prescribed plaquenil for me even before lupus was conclusively diagnosed. He said it was prudent, and acted to help prevent inflammatory damage in the long term. It worked really quick for me, but he said it might take 6 weeks before I noticed any difference. To me, it, like neurontin was a miracle cure for my joint pain.
good luck,
suetoo
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.

Diamond20_UK
Regular Member


Date Joined Jul 2011
Total Posts : 60
   Posted 8/26/2011 9:53 AM (GMT -6)   
I've been on plaquenil for at least 5-6mths now and i was taking it through the day and found side affects hit me more and i stopped it but since i've been back on it, it's took at night time and i have no affects through the day now and refering hair loss i've had that for years through the lupus itself.

I wish you all the best with it and there's a good bonus it's not a steriod.
Diagnosed - Raynauds Phenomenon - Psoriasis - Lupus - Scleroderma
Antiphospholipid Syndrome/SLE - Sjogrens Disease - Hypothyroidism
Sytemic Lupus Erythematosus - Discoid Lupus Erythematosus
Megaloblastic Anaemia - Autoimmune Disease - ANA & ENA (High)
Epilepsey - Manic Depression - Bipolar

Medication - Hydroxychloroquine (Plaquenil) + Other Medications

cat1962
New Member


Date Joined Aug 2011
Total Posts : 8
   Posted 8/28/2011 8:58 AM (GMT -6)   
Hello from one CAT to another. :) I have Sjogren's syndrome and have been on Plquenil since last March. No hair loss and TRUST me..NO weight loss! I even gained 12 lbs last June! UGH..and I need to lose 50. I started Topamax in June for silent migraines and have lost the 12 I gained. whew! I haven't had even ONE side effects from the Plaquenil...unless you count less achy joints!

lupo
New Member


Date Joined Sep 2011
Total Posts : 2
   Posted 9/2/2011 3:25 AM (GMT -6)   
hi guys....here is how plaquenil DIDNT work for me..... 3 weeks on plaq at 200mg in morn and 200 at night.....within 2 weeks was very anxious, crying randomly and a lot, sore eyes and pressure......by end of week 3....insomnia, what sleep i had was riddled with crazy vivid dreams, no energy, non stop panic and anxiety even with valium 3 times per day, loss of appetite and just generally thought i was loosing my mind!!!big time......the only way i worked it out was by going through forums like this and found i wasn't alone.....i didn't take my afternoon dose and my appetite came back and anxiety stabled slightly.....sleapt bit better....didnt take dose this morning and already feel 150% better...mentally...but still it will obviously take time to get that poison out completely......unfortunately, my joint aches were subsiding right as i was loosing my mind....so i guess it was starting to work. but i would rather be crippled than insane and that was definitely coming, even with one more day on it!!! everyone is different and i have read good things, but just gauge yourself if you give this stuff a crack. i will not ever touch it again.
peace

lupo
New Member


Date Joined Sep 2011
Total Posts : 2
   Posted 9/2/2011 3:27 AM (GMT -6)   
Cat111 said...
My doctor has prescribed Plaquenil. He did not give me much of an explanation about the med's side effects --- other then the possible and rare eye issues.


I will certainly see my eye doctor-- and will do what's necessary.



However, I have read anecdotal 'stories' on various chat sites that suggest that Plaquenil can cause major hair loss. YIKES !!!



I have beautiful hair and don't want to suffer thinning hair on top of everything else I'm dealing with. Should I be worried ?????



Also....I know there is such a thing as Plaquenil Toxicity, and that dosages should be considered (to avoid toxicity) according to a person's size and weight.



I am a 5'4 female.....and weigh 116 lbs. Is 200 mgs 2 X day too much?



My other concern is that I will LOSE weight on Plaquenil--- and I can't afford that! Does it always cause weight loss?



My doctor did not express to me that it will take many weeks or even months for the Paquenil to even kick in. This is something I learned through research.



So...... I am seriously worried that I'll be blind and hairless and skinny as a rail before it even starts working !!!!! [img]/community/emoticons/smhair.gif[/img] LOL



This med obviously scares me!



BTW....I do not have Lupus. I have Lyme Disease and am not in a terrible amount of pain. My doctor just thought the Panequil will break the lupus/fibro like pain cycles I am having......and will help me get on with my life.



Any thoughts on Paquenil will be GREATLY appreciated !!!!



Thank you soooo much!


hi, i just posted my experience with plaquenil on here.....check it out and be wary as hell!
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