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???? Lupus symptoms and Plaquenil

Posted: Oct 8, 2014

My daughter has some genetic markers for lupus. They are not totally sure right now after dealing with it for 17 months. I am highly disappointed in her rheumatologist. After her last visit, he said he would get with her lung doctor and that was 2 months ago. I went with her yesterday to her family doctor with an Eustachian tube blockage and ear pain. He gave her meds. He also said the barometric pressure in our area yesterday was bad. We had bad storms. He said it was flying in a plane at high altitudes when your ears pop. Well her had not. We also discussed her most likely lupus symptoms. He was discussing starting Plaquenil. When they put her on prednisone, no joint pains and she feels great but as soon as she stops this she has the joint symptoms again and very fatigued.

Has anyone out ever taken or taking Plaquenil and what side effects do you have? We said they would have to watch her eyes very carefully as it tends to affect that part of the body the most.

Really, at this point we have researched and she has had a lot of blood tests and so far it is pointing to lupus, but they are not 100% sure. She is only 36 years old. She has DS DNA, but genetic markers are inconclusive at this time as to lupus. There are quite a lot of diseases with symptoms like lupus. She definitely needs some type of medicine to prevent flares.

;

lupus symptoms - k

[ In Reply To ..]
I have been to a rheumatologist for symptoms of joint pain with supporting blood work and diagnosed with seronegative RA. Started on methotrexate, then leflunomide and stopped all because of extreme hair loss. Symptoms of joint pain and hand swelling have begun again and have just seen a new one yesterday.

Your daughter's markers are probably inconclusive because if these diseases, especially lupus, aren't clearly defined by physical signs of swelling, butterfly rash, sicca symptoms, etc., it will be more of a watchful waiting approach. People who have hypothyroidism are prone to elevated ANA but don't have lupus. I have an elevated dsDNA but it too is nonspecific.

Plaquenil's retinal toxicity caution is just that. It can happen but very rare and is really one of the more milder DMARDs available. A once a year ophthalmologic visit is what's recommended.

My diagnoses from yesterday were unspecified connective tissue disease and mild RA.

Trying to manage the pain is stressful and ongoing but time will tell, and I think there are forum boards specializing in rheumatologic diseases and you should probably post there.

Wishing you and your daughter the best at finding a conservative measure of treatment.

???? Lupus symptoms and Plaquenil - Vera

[ In Reply To ..]
She does not and has never the butterfly rash. There were 2 diff markers they were looking at. One is positive but the other one is not and that is why it is so puzzling to all doctors. Hopefully, they will find out something definite. Most females in our family have some type of blood clotting issues in our family and each female has a different kind of mutation gene. What is hard on her is that she is such an active person and this has really zapped her, newly married and they are wanting to start a family but no way that could happen on Plaquenil the doctor said, They could adopt or try to use a surrogate but that is so costly and I do not think they could afford that. So frustrating for all.

If it were me ... - ...and it was ...

[ In Reply To ..]
I would *not* want to take expensive drugs that cause horrible side effects. Prednisone is not an innocuous drug and neither is Plaquenil.

I would not be seeking medication for a disease that nobody was certain I had...I would be looking for something else.

There are more and more findings of an association between lupus and celiac disease, and gluten sensitivity looks a lot like lupus. This is not hearsay and unsubstantiated claims, either. It is in reputable medical journals. I gave you a link below. You can google "lupus gluten" or "lupus gluten free" for more information.

I eliminated both gluten and dairy products with spectacular results. I no longer look or feel like I have lupus any longer. No joint issues, no skin issues, no rashes, no foggy thinking, no back pain, no muscle aches or weakness,no headaches, no aphthous ulcers. Nothing. My doctor is thrilled.

This isn't a fad diet. The doctors at my medical center suggest giving it a serious try.

Wouldn't it be worth trying to live a healthy life and have kids?

Someone is sure to come on here and say it is expensive. No, it isn't.

???? Lupus symptoms and Plaquenil - Vera - Vera

[ In Reply To ..]
I have been trying to get her to go and get tested for gluten sensitivity. He did the celiac marker but test results not back yet.

I do not have celiac but do have diverticulosis. I had read the book, Wheat Belly now and I am trying this wheat thing out now. I just wanted to try it after reading tons of material and seeing Dr. Oz and finishing the book by Dr. William Davis. I still want her to get tested for gluten allergies before she starts on drugs, but she is 36 years old and kids just sometimes do not want to listen to their parents for some reason. She has good insurance and I am trying my best to get her to go. I know if she tries to eat ice cream, she throws up and has done so years. I hope she will listen to me this time.

OK, but the testing is inconclusive - and a bit unreliable

[ In Reply To ..]
We don't have reliable tests for everything. If they are positive, well, ok, but if not ... does that mean anything? Not really.

You don't have to be celiac to be gluten sensitive. Thinking about that has changed.

Why not encourage your daughter toward health instead of encouraging her to focus on being diseased?

You see, I don't think I am diseased, because I am not. I feel fine and I *am* fine, and my doctor agrees. I don't consume gluten and dairy because there is something *wrong* with me, but because there is something wrong with *them*. For whatever reason, they made me ill. Just like rolling in poison ivy would make me ill. I don't need a test to prove it any more than I need a test to prove it about poison ivy. The rash is enough. My doctor agrees.

Am I deprived because of my dietary choices? No, far from it. I eat really, really well now. Delicious, easy to prepare, fresh foods. Like you see in magazines.
HPI
I cannot fathom why someone would *want* to take Plaquenil instead of just consuming delicious, fresh foods.

I cannot fathom what the objection would be to giving it a try. Even if she did have lupus, wouldn't a fresh, healthy diet be better than whatever processed mess she is eating now??

I cannot imagine why they would think Plaquenil is going to cure anything, either.

The thought of having lupus horrified me. I did not WANT to have it, or to be on drugs for it, or anything else. I was glad to find that all I had to do to stop looking and feeling like I had it was to eat better.

Every day, though, I see people who prefer taking toxic drugs so they can keep on cramming donuts and Big Macs into their faces. Patients with eczema who insist on drugs because "Ah jest lahks mah bred too much, ah guess! Har har!" Patients with joint pain, rashes, GERD, migraines, and something that looks like lupus who want drugs because "I don't want to have to cook twice for my family." Or, my favorite..."I couldn't bear for them to see me deprived! I'd like to try methotrexate instead."

I see this at work so much that to me, at this point, I almost consider that anyone who won't even try dietary changes for this has a factitious illness. If someone rubbed poison ivy on their skin in order to get drugs and medical attention, and would not stop, we would call it self-inflicted. I don't see much difference between that and deliberately consuming gluten in order to get drugs and medical attention.

The problem is that making the connection between your illness and something you eat, when it is as pervasive in food products as gluten, is difficult.

Lupus - more information - Mary

[ In Reply To ..]
I have lupus and am on both plaquenil and prednisone. I have had suffered no ill effects from either medication.

One extremely helpful resource to learn more about lupus is the following:
http://www.lupus.org/

Are you trying to explain that she has not yet had a firm diagnosis of lupus? (I'm just wondering because simply having the genetic markers of a disease does not mean the person will actually manifest the disease.) Has her blood work come back with a positive ANA (antinuclear antibodies)?

I would more than happy to converse with you via email and try to answer more questions for you. Autoimmune disease is very complicated, and from what I understand, there are at least 20 different disorders that fall within the realm of autoimmune disease.

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