Plaquenil - is it necessary for me?

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Regular Member

Date Joined Oct 2006
Total Posts : 221
   Posted 11/19/2007 9:38 AM (GMT -6)   
At my most recent Rheumy visit, I saw the PA.  I was sad because I really loved Dr. Adams and he was so incredibly thorough...  He had started me on methotrexate, but I was not able to take that bacuase of the severe problems it caused with my stomach.  (I had pancreatitis and things have never been the same for my digestive system since).  So, the PA changed me to Plaquenil 400mg a day.  Since I also deal with Mastocytosis (body makes too many mast cells and causes awful med allergies), I have to take brand name Plaquenil, and not the generic.  My bloodwork looks much better, but my ANA is still sitting around 1:1280.  The Rheumy has me sitting at UCTD still.
My symptoms wax and wane.  Some days I feel Ok, and almost as if nothing is wrong.  I guess I have gotten so used to the fatigue and all over aching that I just muddle through.  Other days its such a chore to even get up out of bed and brush my hair. I still have to get up, get four kids ready for school and go to work. Mostly, my lot is the aching, the fatigue, and the rashes and itching.  Sleep does help most of the time, so I try to get as much as possible.
So, heres my question:  Should I just continue to just keep on going without the meds?  I am not an "official" Lupus patient.  Will the Plaquenil actually help me?  What are the long term effects of this drug?  I would like to weigh taking it vs. not taking it, especially if the long term effects could be negative.
Thank you so much for any input!

Mother of four, full time Systems Analyst
Sjogrens, Crohns, suspected Lupus, Pancreatitis Dec. 2005
Meds:  Medrol injections; Darvocet as needed, Methotrexate, Benadryl, Zyrtec

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 11/19/2007 11:03 AM (GMT -6)   
Hi Victoria, Plaquanil is one of the safest drugs to take for Lupus. It also is used on other A/I diseases. Waxing and waning is pretty normal with Lupus. Because A/I is so difficult to DX they tend to treat the symptoms. It takes a good 6 months before the plaqunil will start showing a difference. I've been on 800 mg. for a year and I started feeling better almost 6 months to the day and I still don't have a DX. With your ANA and other symptoms somthing is going on with you. As long as you can take it I would suggest you stay on it until you at least talk to your real rheumy. Maybe you can call and leave a message and ask for an opinion. I don't always trust their assistance. How ever I think the plaq. is a safe bet at ths point.
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
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Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 11/19/2007 12:03 PM (GMT -6)   
Victoria, I second everything that Carol said. Plaquenil is probably the safest of all the meds used to treat lupus and the possible eye problems are actually very rare. Plaquenil can take a while to build up in your body enough for you to notice a difference - anywhere from 3 months to 6 months and for some, it takes a little longer. If the plaquenil isn't causing any problems for you, it wouldn't hurt for you to stay on it to see if it helps. Like Carol said, it's always best to try to talk to your doc about meds and what might happen if you do or don't stay on them.

I hope that your doc can help you find meds that will work for you without causing too many bad side effects. One of the bad things about this illness is that so many of the meds used to treat it can be hard on our bodies, but many of us wouldn't be able to function without them. Your case is complicated since you can have allergic reactions to meds.

Hang in there and I hope you can figure out something that will help.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Regular Member

Date Joined Oct 2006
Total Posts : 221
   Posted 11/19/2007 12:59 PM (GMT -6)   

Thanks so much Carol and Hippi.  Taking the Plaq is what I was leaning toward... I just have to be so incredibly careful with any medications.  I am checking with my pharmacy today on pricing, and if they can order it.  It seems they dont carry name brand Plaquenil.  Go figure.


Mother of four, full time Systems Analyst
Sjogrens, Crohns, suspected Lupus, Pancreatitis Dec. 2005
Meds:  Medrol injections; Plaquenil 400mg, Vicodin, Benadryl, Zyrtec

Regular Member

Date Joined Oct 2007
Total Posts : 61
   Posted 11/19/2007 3:13 PM (GMT -6)   
Hi Victoria,

I'm in a similar boat as you.I dont have too many symptoms of Lupus but was just diagnosed on October 30th 2007.I just get occasional joint pain and have all the positive blood work for a Lupus patient.I had conflicting reports though.One Rheumy said i dont have any connective tissue disease,one diagnosed me with Lupus and the last Rheumy said''he's not 100% convinced i have Lupus''.I was prescribed Plaquinil over 2 weeks ago and was too scared to take it.....Well,i bit the bullet and took my very first dose today.I feel ok at the moment but i also wonder if i will get side effects.The last Rhuemy said that Plaquinil is the MOST safe of all the meds for Lupus and even pregnant woman take it through their pregnancy without any problems.That statment satisfied me the i took my first dose today.I work with a woman and she was diagnosed with Lupus over 20 years ago and has been on the Plaquinil for probably that long and she said she has no long term effects.

I can relate to your concerns.I feel the same way and have just as many questions.....


Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 11/19/2007 3:13 PM (GMT -6)   
Victoria, the Plaq will work very well. I too, am in the same boat....but, I have been able to live very well with the Plaq. Just, remeber it does take a few weeks to get working. I felt better about the second week out. I have been on Plaq for a few years now, last year I came off of it. Worse mistake, after a few months of being off, I went into a flare. A very bad one, out of work for a month. You may not feeling it working but, it dose.

Enjoy what you can today and leave the rest for another day.

Regular Member

Date Joined Aug 2007
Total Posts : 171
   Posted 11/19/2007 9:14 PM (GMT -6)   

Plaquenil is one of the safest drugs on the market.  Plaquenil is an antimalarial, and it works by blocking ultraviolet light from damaging skin, lowering cholesterol levels, blocking cytokines that promote inflammation, and altering the acid-base balance of cells, thus limiting their ability to process antigens and lessening antibodies. Another important feature is that antimalarials do not lower blood counts or make patients more susceptible to infection. The onset of action is two to three months with benefits noted by patients in four to six months. Antimalarials are not used in the management of organ-threatening lupus.  Plaquenil can decrease damage to the tissues of the joints, skin and other organs in the body.

The most important thing that you need to remember is that the drugs that doctors put us on when they suspect we have Lupus or have given us a diagnosis of Lupus, helps us today, tomorrow and 2 months from now.  By controlling the Lupus they're able to keep the damage to skin, tissue and organs down to a minimum.  The whole name of the game is to keep our body from attacking itself and that's what the Plaquenil helps to do.  When we're in a mode of no symptoms rarely will the doctors take us off the drugs, the drugs are what got us there and they want to continue to keep it that way.  No drugs, the body starts to take over again and attacking itself.

I hope this helps you.  Good luck!

SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
There is no psychiatrist in the world like a puppy licking your face.

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