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Pinkpee
New Member


Date Joined Mar 2012
Total Posts : 6
   Posted 5/30/2012 10:31 PM (GMT -6)   
My doctor put me on Plaquenil. 400 milligrams a day. Will not give me a Lupus dx.. Any other reason a person will use Plaquenil? I have sun induced rashes and painful hip joints and burning in the very low back area. all lupus type blood testing has came back negative as well two skin biopsies. shakehead shakehead I feel like the doc is pacifying me. Any advice?? Also, is intestinal distress a side effect of plaquenil??

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/31/2012 12:48 AM (GMT -6)   
People often have some intestinal issues when first starting plaquenil - things generally settle down in a few days. If the issue persists over 10 days call your Dr. Also, it's good to have at least a few bites of food with it.

What kind of Dr are you seeing? It takes a rheumotologist to completely diagnose and treat Lupus. Even then we often have our symptoms treated long before they feel confident in making a Lupus diagnosis.

Sometimes, esp, with few symptoms and negative blood tests, diagnosis can only be made by trial and error to see what meds improve your symptoms.

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

Elbee
Regular Member


Date Joined Apr 2012
Total Posts : 50
   Posted 5/31/2012 7:51 AM (GMT -6)   
Pinkpee-- Sometimes we don't meet the diagnostic criteria for lupus or other defined autoimmune diseases, but we have enough symptoms pointing in that direction that a doctor may think treatment is useful. Or, like Lynnwood said, a doctor may try us on a medication to see if our response to it is diagnostically useful.

For example, I take 400mg of plaquenil, and I do not have a lupus diagnosis. I have a "UCTD" (undifferentiated connective tissue disease) diagnosis because I have symptoms and lab tests that indicate an autoimmune disease, but I fit no specific criteria. My rheumatologist gave me plaquenil in an attempt to treat my symptoms (mostly rash and musculoskeletal pain), but he noted that if I respond to the drug, that helps him figure out exactly what's wrong.

I agree that you should be seeing a rheumatologist if you have enough AI symptoms to indicate use of plaquenil. They'll know best how to monitor you. And if you have concerns about why you're taking plaquenil, I definitely encourage you to call your doctor and simply say something along the lines of, "Hi, I don't understand exactly why you decided to put me on plaquenil. Can you please explain why you chose this drug for me?" and go from there.

Please keep us posted on how it goes!
Hashimoto's Thyroiditis & UCTD // synthroid, hydroxychloroquine, ranitidine, naproxen, tramadol

Elbee
Regular Member


Date Joined Apr 2012
Total Posts : 50
   Posted 5/31/2012 10:02 AM (GMT -6)   
Oh, and I had terrible GI upset for the first four days I was on plaquenil. Then it went away, and I haven't had any side effects since. Like Lynnwood said, if the GI distress keeps up for ten or more days, let your doctor know. I've also heard that some people who can't tolerate the generic of plaquenil (hydroxychloroquine) because of the GI upset do okay on the brand name Plaquenil.
Hashimoto's Thyroiditis & UCTD // synthroid, hydroxychloroquine, ranitidine, naproxen, tramadol

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 5/31/2012 4:14 PM (GMT -6)   
I am another one with a diagnosis of UCTD.  My symptoms most resemble lupus, but positive ANA is the only specifically associated test that is consistantly positive, other than off and on elevations in Sed rate, CRP and liver enzymes.  I had one very mildly positive rheumatoid factor. 
 
 I've been on Plaquenil for 3 years.  Have tried to stop and/or just cut back twice, in that time period, with the result being a bad flare both times.  It is obviously helping control whatever AI disorder or combination that I have.  Because I still have some bad days and an array of symptoms that continue and flare from time to time - it's easy to think that it isn't doing much.  But I learned my lesson on that - and I try very hard to never miss a dose.
 
I did initially have some stomach trouble when I first started.  It went away within a week or two.  It's important to take it with a little food.  I take mine 200 mg morning and evening rather than all at once.   My pharmacy switched me to another generic about 6 mos. after starting on it and the stomach issues started all over again, only worse.  The rheumy suggested trying the Brand name, instead of generic.  That did the trick. No problems whatsoever with that.  It takes weeks to months before you will feel the full effect of the drug.  Also - regular eye exams are important while taking Plaquenil - either yearly or twice yearly.  My rheumy required a baseline eye exam before starting me on it.
 
I would also recommend seeing a rheumatologist for your symptoms, test results, etc.  You should be followed and retested - sometimes the diagnosis is slow in forming, but eventually comes into focus via lab results.  Be sure to ask for, and keep copies of your lab reports. 
 
I have hip and back pain, and rashes with sun exposure also.  Avoiding the sun is important.  It took me awhile to understand that it was causing flare symptoms as well as rash.  Sun block is essential - even for a dash to the car, etc.
 
Plaquenil is also sometimes used for RA.

Pinkpee
New Member


Date Joined Mar 2012
Total Posts : 6
   Posted 5/31/2012 10:23 PM (GMT -6)   
Thanks everyone. I am not seeing a rheumatologist. Just a dermatologist. I did not have Gi upset initially but have it pretty bad now about 3 weeks in. The Plaquenil has totally cleared my skin minus my scalp. But the hip and lower back muscle pain are still very severe. Guess I'll be demanding to see a rhuemologist now. Thanks again.

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 6/1/2012 10:54 PM (GMT -6)   
I'm in a similar position. My tests for Lupus, RA, Sjogren's etc are negative and I have a weak positive ANA. My joints swell, fatigue, mouth and eyes are dry, ulcers in my mouth and nose, sun sensitivity, Raynaud's, rashes etc. My rheumatologist put me on Plaquenil and just said "this is the medication we use when people have symptoms like yours", but then say I don't have Lupus, RA or Sjogren's!

I see a number of other specialists for my other symptoms. Last week I asked one of my specialists what she thought was going on. She said that I have a connective tissue disease but it hasn't differentiated itself yet. It looks like they've caught it 'early' and that being on Plaquenil for the next few years may put it into complete remission.

I'm doing really well on Plaquenil and have been far less dependent on Prednisone.

If the Plaquenil helps you, then you have some form of connective tissue disease/inflammatory condition.

Good luck! :-)

A sister in the struggle
New Member


Date Joined Jun 2012
Total Posts : 10
   Posted 6/9/2012 8:05 PM (GMT -6)   
It really helps me to know that other people are having trouble getting diagnosed. I thought it was just me. In my case the symptoms are not the joint pain as much as the inflamed heart, lung, gut. and brain. My whole life is centered around keeping the inflammation at bay with food, vitamins Ibuprofen and in my lowest moments...prednisone. Thanks for being there, I don't believe others understand these issues. Andrea

jkpenny376
New Member


Date Joined Jun 2015
Total Posts : 1
   Posted 6/25/2015 10:09 PM (GMT -6)   
I recently started taking plaquenil and am super excited that it has helped my aching stiff joints. I to have been going to several doctors with no clear DX. I have mild positive ANA, hypothyroid. Been to 2 rheumatologist and about to go to my 3rd in hopes of figuring out what's wrong. I'm hoping since this med is working it will give them some insight as to what is going on. I went back to my GP in despair because of the pain and not wanting to go back to the specialist to pay for more test to just be told we don't know come back in 6 months. They prescribed me tramadol to which it cause severe itching and was told to take at night with a benedryl??? That was the best that they could do. That's when I knew I wasn't going back to him. My GP during my last visit suggested putting me on this to see how I responded. I really thought I was going crazy and maybe I was mentally making myself sick as some docs had hinted at. I am so thankful my GP continued to believe me and work to help my symptoms. He wants me to follow up with this 3rd rheumy so they can monitor this med with all the side effects. I'm just so thankful something seems to be working. Would really like to have a few more answers but at this moment am content with pain decrease. I would love to hear follow up stories of how everyone is doing and any insight to what you have learned so far.

LarryF
New Member


Date Joined Jun 2015
Total Posts : 1
   Posted 6/26/2015 9:39 PM (GMT -6)   
Plaquenil is effective for Lupus patients, as well as people with UCTD (described to me by a rheumatologist as "Lupus-like" or "Lupus-lite" or "mild Lupus"). So it's very possible to be on Plaquenil without having a formal Lupus diagnosis. To get a Lupus diganosis you need to have 4 or more of 11 Lupus criteria, within a 5 year period. A lot of people have less than 4, or as in my case, more than 4 but spread out over much more than 5 years. So it's very possible for plaquenil to do good without you being considered to have Lupus.

I went on plaquenil in 2004 for joint pain, high ANA and pericarditis. It stopped my symptoms cold, after it kicked in in a few weeks (one must be patient with plaquenil) In 2015 I got pleurisy for five months; after getting routed around from GP to pulmonologist and then to a rhematologist, I ended up back on plaquenil and once again it worked its magic and really helped tremendously with the problem. I just don't know what I'd do without that drug. It's very, very effective for people at the milder end of the UCTD-Lupus continuum (in other words, people with mild Lupus-y disease; in more severe cases it is usually still part of the mix but definitely not the whole treatment). If your doctor won't diagnose you with Lupus, he probably thinks you fall into that category of milder disease.

In the old days, getting a diagnosis of Lupus was really bad news in terms of health insurance, so doctors tried to avoid it unless it was a clear cut case. In other words, once you had LUPUS tattoo'd on your forehead, your rates skyrocketed and you could lose your insurance. At least that's what a rheumatologist told me back then. With the new health care law, I guess it doesn't matter anymore. It's not like insurance can raise your rates if you have Lupus, but in the old days that did happen. So historically, I think doctors avoided that dx, but perhaps going forward they will be quicker to call mild / borderline cases "Lupus". However, it's been my experience that patients are far more interested than doctors in putting labels on things - rheumatologists are pretty focused on the practical issues of your symptoms and how best to treat them, not on whether something is UCTD or Lupus.

Intestinal problems should resolve pretty quickly, but I do have ongoing gas/minor discomfort from plaquenil. Beano and Gas-X help a lot with that. It's a small price to pay for the major positive impact of the drug, for me. I'm on 400 mg/day. Trying out different times of the day and/or taking it after a full meal might help.

Post Edited (LarryF) : 6/26/2015 9:02:05 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/26/2015 10:55 PM (GMT -6)   
Probiotics help my tummy issues.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

SunshineInGA
New Member


Date Joined Jun 2018
Total Posts : 1
   Posted 6/18/2018 1:19 PM (GMT -6)   
I have discoid Lupus & started taking Plaquenil (generic version) about 3 or 4 months ago. In the beginning, I was super excited because it was the only thing helping my back stop being so angry except for the injections. (which I hated & have been doing for about 6 years) But then I started getting the horrendous itching & burning side effect down both of my inner arms, from the hand up to the elbow. Sometimes it would last about 15-20 minutes (which still feels like a lifetime) & sometimes it would last for over an hour. It scared me to death! So I went from taking the Plaquenil twice a day to once a day but it's still happening, just not as frequently. Then I heard that if you take an antihistamine it will help. So now I'm taking that as well. Has anyone has this problem & seen where it will finally just STOP!!! I don't want to stop taking the Plaquenil but I can't keep going through the itching & burning like this. And now I'm getting headaches & nausea as well. confused
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