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07-26-2004, 12:41 AM
Hi, my name is Cheryl, I'm 47 and I have just been dx with lupus,kinda dx. I took My son to the Dr. Fri. and asked if he had any of my test results back yet.( went for bloodwork 3 weeks before) he said yes they were back and yes I have lupus. He wants more blood work and then when those test come back he wants to see me. He said we will go over everything then. He already has me on predinsone for severe swelling in my feet and hands. He also has prescribed plaquenil, but I'm afraid to take it. He has thought for about 4 years that I have had lupus. Have had the blood work several times. I get this really bad skin rash when I go out in the sun. He said I also have Raynauld's. Could some please tell me something about the plaquenil? All I know is that my Doc. said I would have to have an eye exam every month. TIA

07-27-2004, 09:22 AM
Hi Cherylann;
Plaquenil (hydroxychloroquine) is an anti-malarial drug. It is used in Lupus primarily for the rash and cutaneous manifestations. The monthly eye exam is to ensure that the drug is not affecting the functions at the back of the eyes (one of the side-effects). Plaquenil is a relatively safe drug and the benefits far outweigh the side-effects (in my opionion).
Hydroxychloroquine is a one of a number of drugs which have been used for many years in the treatment of malaria. Fortunately, it was discovered these drugs often are helpful in the treatment of various rheumatic diseases, particularly systemic lupus erythematosus (SLE or "Lupus") and rheumatoid arthritis. Although chloroquine is sometimes used, the preferred antimalarial drug is hydroxychloroquine due to its greater safety. These drugs are not painkillers. Plaquenil can decrease damage to the tissues of the joints, skin and other organs in the body. It is given as a tablet that is best taken with food as it has a slightly bitter taste. Generally it is taken once a day, but occasionally it will be prescribed to be taken on alternate days. Treatment generally starts with two tablets per day and subsequently may be reduced to one a day (or every other day).
The majority of patients will find Plaquenil to be effective, but like other anti-rheumatic drugs, it may take between 8 to 12 weeks for the disease to respond to the drug. Often you will be given other medications when you start Plaquenil so that you will improve more quickly.

Plaquenil (Hydroxychloroquine) is one of the better tolerated anti-rheumatic drugs. However, as with all medications, there is a potential for side effects to occur. Mostly, these are not serious, so you may not need to stop the treatment if side effects occur. However, if any serious problems occur, your treatment should stop. If you develop any of the problems mentioned, let your doctor know immediately.

The most common side effects are mild nausea and occasional stomach cramps with diarrhea of a mild degree occurring sometimes. As mentioned previously, the tablets are slightly bitter and are best taken with meals to avoid stomach upsets.

Skin rashes occasionally develop and hydroxychloroquine may make you even more sensitive to the sun, so it is advisable to use the usual precautions of sunscreens and a hat if you are in the sun. Also, your hair may become a little bleached with the drug and rarely a degree of thinning of the hair can develop.

Some patients develop headache or dizziness and may become a little weak whilst on hydroxychloroquine and if this occurs, the treatment should be stopped.

Anti-malarial drugs can sometimes cause problems with the eyes. The side-effects range from temporary blurring of the vision and a slightly increased appreciation of glare (so wear sunglasses in the sun) which are not uncommon to more serious but rare changes in the back of the eye.

Eye problems were much more common in the past when chloroquine was the most commonly used anti-malarial drug and dosages of these drugs were considerably higher. Because of these problems, before you start Plaquenil you should schedule an appointment with an Opthalmologist to assess the eyes and to make sure that there are no eye problems present that could make side effects more likely. Your Opthalmologist should schedule regular eye exams every 6 months to test for possible eye problems associated with hydroxychloroquine.

Finally, hydroxychloroquine should be avoided in pregnancy, so please discuss this with your rheumatologist if you wish to become pregnant.

Generally there are no drugs that make a side effect more likely with Plaquenil. Indigestion remedies should not be taken at the same time as hydroxychloroquine. Try to allow 4 hours to pass between taking one and the other.
Do not be afraid to take your Plaquenil as the benefits are worth it. Give it a couple of weeks before expecting major improvement. But, once the improvement starts, it continues fairly rapidly!!
I hope that I have been able to answer your question. If you need anything further, please do not hesitate to write again!!
Peace and Blessings

07-29-2004, 12:20 AM
Hopefully, your doc is referring you to a Rheumatologist and running some blood and urine tests to rule out kidney problems as a source of swelling.

My sister has taken Plaquenil, and I'm on immune suppressants much stronger than it. I'm hoping to "graduate" to Plaquenil someday! :lol:

Good luck with this process. Your doing a good job by asking lots of questions!


07-29-2004, 10:36 AM
I was skeptical of taking yet another drug for my lupus. But I have to tell you, I have been on Plaquenil for 8 weeks and I am starting to see wonderful results! I climbed stairs the other day and I said, "Hey, I feel no pain!" My hands are no longer swollen. It is incredible and has given me such a feeling of hope.

As to the concerns about the eyes - my eye doctor told me that the risks are so remote that some countries no longer require frequent eye exams while on plaquenil. He advised me to have an eye exam every six months.

07-31-2004, 11:24 PM
Hi Cheryl, this is my first time here and posting a note. Your post was the first one I came across. I am 37 years old and Just last Thursday, my doc said that my discoid lupus (dx 3/04) was the symptom of SLE. After tests; my ANA were positive. I AM SCARED TO DEATH AND SO AFRAID TO TELL MY FAMILY. I hate to burden them with any of this. Anyway, my PCP put me on Hydroxychloroquin (Planquiel) 2x's per day. I must say that my hair loss has subsided, i am not tired all of the time, my discoid scars have lighten up so you really cant tell and most of all, since June I have not awaken to stiffness. I have not experienced any side effects; although I have become less tolerable of diary products. I hated taking the damn pills in the beginning because it only made it so real that I have such a threatening disease. Im in shock right now and have not really digested my new dx. ITS SO HARD! Here I thought that it was just a skin problem (discoid) and that I could deal with a few freckles.... boy was i in for a shocker last thursday.

Just to think that this time last year I was undergoing comprehensive examinations to become a kidney doner for my brother. Out of the 6 antigens needed; I had 5 of my brother's.. that made me a perfect match. I was thrilled and gave him my kidney. The doctors were amazed and baffled with the outcomes. My brother was in the recovery room sitting up and requesting food! Across from him was me... i was in PAIN and that morphine kept coming.. I later developed periocarditis and they could not understand WHY.... I had all the tests known to man prior to my kidney donation; except for the ANA or LUPUS tests. They only went on medical hx and heridity factors.. Now Im worried for him and hope he doesnt develop anything that is similiar to lupus. THis has just totally thrown me for a loop. Here I am thinking of having a family and now I cant...

Im sorry for rambling, Cheryl and back to you; The tx of hydroxychloroquin slows down the lupus and usually takes 3 months to get into your system.

Good luck