Doc just put me on a med called Hydroxychloroquine 200MG TAB, TWICE PER DAY

[momof15]

I'm having really bad side effects from this drug. I think constantly about negative thoughts and I get bitterally ANGRY!! Does any one else have this problem? Does it ever go away? What can I do? Can you share your stories????? PLease!!

[alinewinters12]

I am taking the hydroxycloraquin 200mg daily. I was on 200 mg bid, I told my Dr I felt like I was on too much he decreased it and I have no side effects at all. Hope that helps.

[lupus-support1 Administrator]

IMHO, I think you need to contact your rheumatologist who has prescribed hydroxychloroquine. Confusion, unusual thoughts or behaviour can be a side effect but only your doctor can determine your symptoms in relation to Plaquenil.

You will find more information at our other website for LUpus Patients Understanding & Support (LUPUS): lupus-support.org

Hydroxychloroquine (Plaquenil) is an anti-malarial and has been safely used to treat SLE for many years. However, if you are going to a country which has malaria, Plaquenil will not protect you from malaria. Hydroxychloroquine is a DMARD ie a Disease Modifying Anti-Rheumatic Drug.

The bark of the cinchona tree has been known for centuries by the South Americans as a treatment for fever. The essential ingredients of this particular bark were quinines (found in small amounts in tonic water). Quinines were found to have a variety of healing powers; in fever, aches & pains, cramp and more widely, in treating malaria. In the quinine family, chloroquine became used world wide, not only for malaria but also for a variety of skin diseases. One of the recognised skin diseases was lupus and during the nineteenth century chloroquine became widely used for cutaneous lupus.

In 1895, Dr Thomas Payne, a physician in St. Thomas' Hospital London, recognised that chloroquine might have more general healing powers in lupus, for example healing joint pain & fatigue. This discovery paved the way for a century of 'antimalarial' use in various forms of lupus.

Hydroxychloroquine (Plaquenil)

The 'older' drug chloroquine, whilst very effective, had a number of serious side effects including nausea, and in high doses, retinal damage in the eye. The move to the 'son of chloroquine' - hydroxychloroquine - trade name Plaquenil, has changed all this. Plaquenil has a very high degree of safety (particularly regarding the eyes) and in most countries in the world (sadly not all) has replaced chloroquine.

What does it do?

Plaquenil has beneficial effects on 3 major aspects of lupus; skin rashes, aches & pains and fatigue. It has also been found to help in a number of other features of the disease, though less predictably.

It is very effective in the treatment of a whole variety of lupus skin rashes, particularly those found to be worsened by sunlight. Thus it is widely used as first choice (or 'first line') treatment in lupus. As well as helping the skin itself, it is often helpful in treating hair loss in lupus. It helps the muscle & joint pains, though in cases where these are severe, its effects may be too mild. One of the most successful uses is in fatigue, many patients showing improvement after several weeks' treatment.

How does Plaquenil work?

Surprisingly, the reason for its success in lupus still remains somewhat mysterious. It has a wide variety of known effects - aspirin-like anti-inflammatory, mild immunosuppressive and (mild) cholesterol lowering amongst others. Perhaps an important property is that of sun-protection. This may contribute to its success in treating many sun-sensitive rashes in lupus. It is the practice of some patients from sunnier countries, such as Greece, to take Plaquenil in the summer months, coming off for winter.

Dose

The normal dose of Plaquenil is 1 tablet a day (200mg/day). Some doctors recommend 2 a day (400mg/day) but we find that 1 a day suits most people - the dose can always be increased for a flare. One of the attractions of this medication is its long 'half-life' - it stays in the system for days & weeks. Thus many patients find they can gradually lower the dose - for example to 3 tablets a week - Monday, Wednesday & Friday.

For how long?

The answer is 'for years', if necessary. There are no firm rules about duration, though many lupus patients find they benefit by staying on a 'long term - low dose regime'. An interesting study from Canada found that there were more flares of lupus if the drug was stopped, suggesting it was keeping the disease at bay.

Side effects

Hydroxychloroquine (Plaquenil) is one of the safest drugs in medicine. Serious side effects are rare & routine blood tests are not required. Allergy (new skin rashes) is unusual but it means ruling our future use. Commoner, usually mild, side effects are indigestion, 'gurgly tummy', diarrhoea & headache. A rare, but important, side effect, usually on higher doses (2-3 tablets a day) is of 'lazy eye' - slight difficulty in focussing. Although harmless, it is important as it causes patients to worry about blindness - and needlessly stop the drug.

Pregnancy

Another reason for wrongly stopping the drug is pregnancy. Hydroxychloroquine is safe in pregnancy and is in routine use in our own lupus pregnancy clinic at St. Thomas' Hospital,London.

The Eye

The older drug, chloroquine, in higher doses, was found to cause damage to the retina of the eye - in extreme cases, blindness. Fortunately, Plaquenil is considered safe. A few years ago we published a careful study, with our eye colleagues, of patients taking Plaquenil daily for 5 years. No eye toxicity was seen.

Other anti-malarials

Another drug with similar properties to Plaquenil is Mepacrine (in some countries Atabrine). It is very much a second choice for 2 reasons. Firstly, it can cause yellowing of the skin. Secondly, it is very bitter & most unpleasant to take. Nevertheless, it is an extremely effective medicine in patients with severe skin rashes.

Some 20 years ago we introduced a 'combination regime' of Plaquenil & Mepacrine for patients with severe skin lupus - Plaquenil 1 or 2 a day plus Mepacrine (100mg) or alternate days. This regime is now widely used in lupus clinics around the world.

[lonelyone in reply to lupus-support1]

thank you.. was worrying about starting this.

[lupus-support1 Administrator in reply to lonelyone]

It is normal to feel anxious about medication. Your doctor has put you on a starting dose of 1 x 2 hydroxychloroquine ie 400 mgs a day.

If you have any strange symptoms, tell your doctor. Most people are fine!

Be well!

Ros

[Denise1219]

Yes that's what happens to me and my doctor put me on celexa and cymbalta. And it has helped me.

[momof15 in reply to Denise1219]

I was already on Celexa 60 mgs daily, but I have been on it for over 20 years now and don't really feel the great results that I used to have with it. I am constantly fighting depression. My pcp has offered to take me off Celexa and try me on the Cymbalta. I am so very sensitive to medications. I have over 15 different meds on my allergy list and had severe allergic reactions to all of them so I am very fearful to try anything different!

[Denise1219 in reply to momof15]

Aww I am so sorry to hear that. My doctor took me off celexa and now I'm just on cymbalta and so far so good. But I don't know if it will cause you and reaction. I hope not. Good luck

[freedomact2011attnet in reply to momof15]

It seems that after being on a medication for years that has worked seems to loss it's affect or you may develop an allergy to that medication. I had to switch to Cybalta to treat my depression and admit that I was suffering from Fibromyalgia and that Cybalta would would help. Give it a try, unfortunately its always seems to be a'' trial and error " treatment for us with Lupus. Good luck

Lupus for 34yrs.

[lupus-support1 Administrator in reply to freedomact2011attnet]

How did this work for you?

With good wishes,

Ros

[lupus-support1 Administrator in reply to momof15]

How are you faring?

Wit good wishes,

Ros

[Smithjoy]

I don't have those issues, but, I'm having eye problems and it's lowered my white cell count where I'm going to end up having the bone marrow test. My eyes are my biggest concern right now. I keep seeing light flashes out the sides of both eyes as well as floating black strings. I'm 64 and other than being nearsighted, never had eye issues. I stopped the medication and I refuse to take it anymore (2x per day). Eye doctor saw that the jell in each eye has little tears, so off to the opthomologist on Thursday. I'm fearful of going blind! Are you using any other meds that may interact with the placquenil? If so, that could be the problem. Did you ask the pharmacist about reactions? If you drink, limit that or don't drink anything, beer,alcohol, etc. If it persist, see your doctor about discontinuing its use and maybe getting something else. Good luck, you'll be OK. Don't get anxious, there's other meds for treating lupus.

[lupus-support1 Administrator]

When you say you are having eye problems, do you mean by taking Plaquenil?

I strongly recommend you get an appointment to see an ophthalmologist ie an eye doctor - NOT an optician. It is always better to get your eyes checked annually if you are taking Plaquenil, although it is very safe. When SOME patients first start taking Plaquenil and take 2+ tablets from the beginning, sometimes this can affect the eye muscle. When Plaquenil is stopped, the symptoms disappear. This is why many lupus specialists begin with 1 tablet a day (200 mgs) and then increase to 2+if necessary.

Those with Sjogren's Symptoms have DRY EYES ie they do not make tears. There is a simple answer: use artificial tears which can be bought over the counter. They are saline with the same amount of salt as in tears and can be used many times a day.

I hope your appointment goes well. Please let us know how you are.

With good wishes,

Ros

[lonelyone in reply to lupus-support1]

Hmm I was told that I needed to get eyes cked also. Funny thing tho Ive already been having eye problems was recently sent to eye specialist.. bad vision even with glasses.

[lupus-support1 Administrator]

Please ensure you see an ophthalmologist every year because they will make sure that everything is OK.

I sympathise because I cannot see anything without my glasses!

Be well!

Ros