Lupus & Plaquenil/Pain

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Scarlett O'Hara
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Date Joined Nov 2012
Total Posts : 2
   Posted 11/12/2012 2:30 PM (GMT -6)   
I was diagnosed with lupus in about '85, they said at that time I had probably had the condition for a while before it was found because I was on steroids for copd. The Rheumatologists I saw were of the opinion that since I was already on steroids I just needed monitoring not any other meds. I was recently referred to a Rheumatologist by the Dr. overseeing my blood disorders. She now wants me to start on Plaquenil, I am quite concerned because my eyes seemed to be the only system that still work fairly well. I asked her if the Plaquenil would help with the pain but she indicated it probably wouldn't. I used Darvocet for years with no side effects and was able to get out & live a semi-normal life. Since it is now off the market I find I am just trying to tuff out the pain & it really gets tough to cope.Vicodin is not a good drug for me & my blood disorder limits anything else, they do allow naprosyn but in limited dosing. opinions welcome



SLE, COPD Lupus Antibody Blood disorder

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/12/2012 3:17 PM (GMT -6)   
Plaquenil did help with some of my pains and fatigue. However it does take up to six months for it to fully kick in.

As long as you have your eyes checked every 6 months you shouldn't have trouble with the plaquenil. Plaquenil Toxcity takes a long time to build up.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 11/12/2012 9:01 PM (GMT -6)   
Plaquenil does help with some of the symptoms of Lupus, but it does take a few weeks to start helping. It's most important role is to inhibit progression of the disease -- I'm really surprised you haven't been on it ever since the Lupus was diagnosed.

Eye issues from Plaquenil are quite rare, and most guidelines are to have a ophthalmologist perform screening every year. I've been taking Plaquenil 10 years now, without any issues.

You might want to see a pain specialist if that is your biggest issue -- they are always coming up with new methods of pain management and the specialists are the ones who know about all the latest research.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 11/12/2012 10:57 PM (GMT -6)   
I was started on Plaquenil about 2.5 months ago. I wish I could say that it has helped, but it has not - BUT it has not had enough time to kick in. I am also on a very low dose.

I do have issues with my eyes to begin with, so they are keeping a very close watch on me. You need to go to an Ophthalmologist and get a baseline exam (to check for the health of your retina). As Joy said, just make sure you get checked every 6 months (My eye dr said yearly because if the dose, but I am going to double check with her later if they increase my dose).

Post Edited (SoSt9) : 11/13/2012 9:38:53 PM (GMT-7)


Scarlett O'Hara
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Date Joined Nov 2012
Total Posts : 2
   Posted 11/13/2012 10:14 AM (GMT -6)   
Thanks, I also have some issues with my eyes (laser treatment for narrow angle glaucoma) and would hate to lose any of my site or color. I also read that it can make you color blind. I plan to see my eye Dr. before I start the new med. and get her advice. They are watching for growing cataracts already & I see her every 6 months. I was on long term levaquin about 1 1/2 years ago and seem to be having tendon pain in right leg, which adds another dimension to my woes.


"Always remember this is NOT the worst thing that has ever happened to you" Radar O'Riley

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/13/2012 10:15 PM (GMT -6)   
I have open angle glaucoma that's why I have it every 6 months.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

coreya
New Member


Date Joined Dec 2011
Total Posts : 7
   Posted 1/13/2013 9:27 PM (GMT -6)   
I take 200mg Plaq per day and it nips all my pain in the bud. however, some side effects of Lupus I have are: Lupus Fog, smelling non existent odors (acrid smells), occasional dizziness. Other than these, my life is fairly normal. The Fog aspect is really frustrating as it can cause embarrassment seeing people I have recently met and talked to for hours and having no memory of these conversations and not oftentimes not remembering having met them. Only slight familiarity of their face MAYBE!!! Funny thing is my numbers side of the brain is totally intact and I can remember a long chain of numbers if read to me and asked for days later. The brain works in mysterious ways

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/13/2013 9:54 PM (GMT -6)   
Fog is so fun! (sarcasm)

I just love going into a place and forgetting what I'm going for.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 1/14/2013 1:45 PM (GMT -6)   
I got started on plaquenil straight away its a malaria tablet helps control our lupus and helps with the rashes the erythematosus part causing the redness it seems to help the rashes keep at bay alot more than it does the pain i dont no alot have only been diagnosed since last year july but was started on it from the day i can the prednisolone and plaquenil combined has helped to pain to a minimum able to cope in some way

bluejeans
Regular Member


Date Joined Dec 2012
Total Posts : 269
   Posted 1/14/2013 7:41 PM (GMT -6)   
I have been on plaquenil for at least 7 years. It did take awhile to work and it has helped the pain and energy levels. I take 10 mg steroids daily. You nned to treat the pain but first you need to treat the disease before it gets rampan
Post lymphoma,Spleenectomy, Lupus, Sjorgrens, RA , Fibromyalgia, GERD, short bowel syndrome, scolisis, arthritis of spine, spondylosis, splondylesis, DDD,DJD

Faith in God, the love of my family and a good attitude keeps me going.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 1/23/2013 2:59 PM (GMT -6)   
Scarlett
 
So interesting that you posted about this because I have a lupus antibody blood disorder.  I had blood clots go to my lungs in 2009, then again in November & December 2012.  Finally saw a hematologist and was diagnosed with Antiphospholipid Syndrome and + lupus anticoagulant.  I have Crohn's, and he thinks this is the reason for these, not that I have lupus (though sometimes I wonder...have a lot of joint pain lately...but for now I'm on Humira)
 
Anyway, the APS (antiphospholipid syndrome) can be treated with Plaquenel so I was reading here for information about the side effects.  The hematologist said there weren't many side effects, but I figured you all could tell me better than a doctor what the side effects are like.
 
So far I've seen that some of you had a foggy feeling, but more energy.  Does the fog wear off the longer you're on the med, or do you experience this for as long as you're on it?  I will be on it for 3-4 months in addition to warfarin then recheck bloodwork and see if I need it for longer, or if it took care of the APS and I can go off Plaquenel and warfarin...

It's my decision to make whether or not to try the Plaquenel, or when I want to, so I was so glad to find a thread that had info that answered some of my questions.

BTW, did you have blood clots, or find out about the blood disorder when testing for Lupus?
 
Hugs to all of you!  Thanks for all the info you provided already!
Becky (aka Monkiray77)

Crohn's, Anxiety & Depression, Migraines, Chronic Lower Back and Right Leg Pain , Pulmonary Emboli (twice) & Pneumonia

Surgeries: 2 Bowel resections, appendix & gallbladder removed, July '11 Adhesions removed to prevent more obstructions

Meds: Humira, Warfarin, Prevacid, Prozac, Verapimil, Pravastatin, Calcium, Vit D3, Vit B12, Lortab, Zanaflex, Clonazepam

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/23/2013 4:17 PM (GMT -6)   
Plaquenil doesn't cause the fog -- Lupus does! So please don't think that if you take Plaquenil you'll get all foggy, it doesn't work that way.

I've been taking Plaquenil (for Lupus) since Spring 2002, and have had no side effects. However, it is important to keep up with regular eye exams every year -- some people (very few) have eye issues that, if you find them quickly, are reversible. Plaquenil and Your Eyes rolleyes

I have not had any blood clots, nor any reason to be tested for clotting disorders.

Hope this helps!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 1/23/2013 11:11 PM (GMT -6)   
Hi there just wanted to let you know that Lynnwood is correct the plauqnil does not cause our fog issues. They come from our lupus, for some lupus patients the fog can be terrible.

I like Lynn have been on plauqnil since June 2001, there are some concerns about me having reached toxicity levels with the drug. I'll be getting a special field vision test made especially for plauqnil on the 3rd I think.

If you start to have any eye issues don't let them slide. If it is causing an issue, once they take you off of the drug you should get better. Plauqnil is considered the safest drug that they start with first. It can take up to 6 months for you to get the full benefits from it. Some people have issues with stomach issues but that normally gets better.

I like you have APS and the lupus anticoagulant disorders as well. I will be on Coumadin for the rest of my life. I had my first blood clot in my inferior vena cava. Then 2 years ago they found I had (still do) a huge blood clot in my superior vena cava. I'm lucky that the Coumadin clinic I go to was able to arrange for me to do my own INR testing here at home. Alere Home Mointoring is the company that provides my testing equipment and supplies. I do my test, call the results in, they fax my results to the clinic, then the clinic calls me with any adjustments that are needed.

Feel free to ask as many questions, or come and vent, here we all understand what it's like to have lupus and other things as well. Welcome to the group.

Hugs,
Barbara

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 1/26/2013 8:01 PM (GMT -6)   
Barb,
I had no idea you had APS as well. So since you've been on Plaquenel for a while, have you retested to see if your APS numbers have gone down, or if they're still high? My hematologist said it's possible to eventually go off coumadin after treatment with Plaquenel.

I also wonder, I'm already on 1 immunomodulator (humira) so do you have twice the sensitivity to picking up viruses and illness being on 2?

I was thinking of seeing if I can see an immunologist as I think they'd be able to answer that. Also have to see a rheumatologist since joints are going crazy...dr thinks that when I had bronchitis my body freaked out and stopped producing enough steroids, so I'm on pred now and check back with him Monday to see what dose to stay at. (I tapered from 20 down, but woke up today and pain started again in joints so I took 5mg again)

Thanks for all your help! And sorry Scarlette for kinda hijacking your post.

Hugs!
Becky (aka Monkiray77)

Crohn's, Anxiety & Depression, Migraines, Chronic Lower Back and Right Leg Pain , Pulmonary Emboli (twice) & Pneumonia

Surgeries: 2 Bowel resections, appendix & gallbladder removed, July '11 Adhesions removed to prevent more obstructions

Meds: Humira, Warfarin, Prevacid, Prozac, Verapimil, Pravastatin, Calcium, Vit D3, Vit B12, Lortab, Zanaflex, Clonazepam

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 1/26/2013 8:06 PM (GMT -6)   
P.S. I WISH I could self test, but I have Kaiser and they don't offer at home coumadin testing unless you're homebound and require home health nursing (which I used after the most recent clots in lungs)
Becky (aka Monkiray77)

Crohn's, Anxiety & Depression, Migraines, Chronic Lower Back and Right Leg Pain , Pulmonary Emboli (twice) & Pneumonia

Surgeries: 2 Bowel resections, appendix & gallbladder removed, July '11 Adhesions removed to prevent more obstructions

Meds: Humira, Warfarin, Prevacid, Prozac, Verapimil, Pravastatin, Calcium, Vit D3, Vit B12, Lortab, Zanaflex, Clonazepam

Fyster25
New Member


Date Joined Feb 2013
Total Posts : 1
   Posted 2/5/2013 6:59 PM (GMT -6)   
I was diagnosed with discoid lupus the February 1986. The symptons started in back in the summer of 1985. Two weeks ago I've had something to happen that really scared me. I had been sitting at my desk working and all of a sudden I got this burning sensation inside my body starting in my feet and going up to my head, felt like I was fixing to pass out and then had a panic attack. Last Thursday I had already went to sleep and it started happening again. I had my husband care me to the emergency room. They only saw that my potassium was a little low. I was put on a potassium tablet. Thought I would be alright. Yesterday at work it began again so I called the clinic and was able to get an appointment and was told my potassium was real low just about 1/10th lower than the lowest number for potassium level. My doctor seems to think it could be related to my lupus flare-up. I'm also on a generic brand medication for Plaquenil since Oct 2012. This has been a frightening experience for me anyone that has had or still has this to happen how have you managed to keep calm when it hits.

Thanks,

Fyster25

bluejeans
Regular Member


Date Joined Dec 2012
Total Posts : 269
   Posted 2/5/2013 8:47 PM (GMT -6)   
I have the antiphosphoid syndrome to. My levels were off the charts. I have not had any blood clots issues, so I am on 81mg asa instead of a blood thinner. I have been retested and my levels are still extremely high.
Post lymphoma,Spleenectomy, Lupus, Sjorgrens, RA , Fibromyalgia, GERD, short bowel syndrome, scolisis, arthritis of spine, spondylosis, splondylesis, DDD,DJD

Faith in God, the love of my family and a good attitude keeps me going.
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