[Maura]

Hi,
I have another question about Plaquenil.
I have been taking this med for many years with little side effects. :lol:

I have been feeling really bad these last months with lots of muscle aches and feeling really tired. So my rheumy decided to increase my Plaquenil to 400 mg a day. :worried::worried::worried:So I have to take 2 tablets a day for about one year. Anyone out there who takes 400 mg?

Hugs

Maura

 

[Katharine]

Hello Maura,

Most of us take 400mg of plaquenil. A 200mg dose is pretty rare and is only used if you are doing very well or if you have very low body weight. It is also sometimes used as a maintenace dose for some people who have have difficulty tolerating plaquenil. As you have been taking 200mg with no trouble, you shouldn't have any trouble with 400mg.

I hope the increase brings about a difference for you and you start feeling a lot better soon,

Katharine

 

[nicky00]

Hi Maura.

I was started on 400mg a day and have been taking that dose for about 18 months.

I did not feel the real benefits until the 10th -12th month although I am aware that some feel better after 4-6 months.

As it takes time to build up in the cells then I would assume increasing the dose would also take time to reach its full potential.

Hope you find some relief.....

By the way just as a side note I also have now been given Mepacrine ( another anti-malarial) alongside Plaquenil to futher improve the condition.

Nicky

 

[bluedolphin]

Maura,
Hey. I take 400 mgs of plaquenil daily too but I have only been on it for a few weeks as I am newly diagnosed. I hope that it does well for you (and soon).

Hugs,
Tracy

 

[Clare.T]

Hello Maura

I am sorry you are still feeling so rotten and can't help wondering if it isn't time for you to try an additional disease modifying medication. Your doctor seems rather slow off the mark if he has only now increased the Plaquenil. I don't know if the increase in Plaquenil will prove enough. He should certainly be able to tell you how soon you will feel the benefit. Sadlt I have never heard of anybody in Europe being prescribed Mepacrine( US Quinacrine) outside a hopital setting meaning a lupus specialist rheumatologist who works in a teaching hospital. Adding the Mepacrine to the Plaquenil can be an excellent way of bringing great improvement without moving on to the DMARD's
Ask your doctor what the treatment plan is if this extra Plaquenil doesn't help - usually it is either Methotrexate or Imuran or these days Cellcept might be proposed.

I hope you'll be feeling much better soon. Your little girl must be quite big now !

All the best

Clare

 

[Maura]

Hi,

Thank you so much for all your replies. I am now taking 400 mg of Plaquenil. The doc told me it will take a few months to feel any benefits. I don't know why he is a bit reluctant to change my treatment. Maybe because of the heart meds I am taking. I will wait a few months and if I don't start to feel better I will return to him to talk about a new approach.

Clare, Thank you for asking me about my little girl. She is 3,5 years old and so sweet, she understands so much already. We are so lucky to have her.


Big hugs

Maura

 

[hardcandy]

Too much Plaquenil?

Glad to see this thread! I take 400mg of Plaquenil. When I went down to 300 several months ago, I noticed a difference - body aches came back, had more falling-asleep-on-the-carpet episodes. Going back up has been good. But.

I went online today, since I've added Tagamet (Cimetidine) to my meds, and saw that it can increase levels of Plaquenil.

This site said that the maximum dose is 6.5 mg/kg of body weight daily. If I've done my math correctly, my maximum dose is around 350 mg. I weigh about 120 lbs right now. My weight fluctuates up to about 130, but even at that weight, the maximum dose is 390.

Are some of us taking more than we should? If so, what are the risks? The visual stuff? What's your maximum dose vs what you take?

I'm so used to thinking that pretty much everyone takes 400 mg, that 400 is a standard dose. So it can't be that bad, can it? Most people taking the meds are women, and many women weigh 130 or less, so you would think they would factor that in.

Has anyone ever been on too much Plaquenil, or been told that you're on too much Plaquenil?

 

[Maia]

Like you, I was decreased to 300mg but I don't think I've noticed too much of a difference in my symptoms. Prior to that, I had taken it at 400mg dose for more than a few years.

The max recommended dosage is the 6.5... & you're math looks quite accurate to me... but the one thing you're missing is that the dose is based on "ideal" weight instead of actual weight. So the shorter you are/the smaller your bone size, the less Plaquenil you should take. Many doctors believe the 400mg dose is appropriate for every adult though. The eye problem risk is very VERY small, and many doctors believe the benefit of 400mg dose outweighs the very tiny risk of eye problems for a short/small stature woman.

For you, I'd recommend discussing with your doctor the increase in your symptoms since going on the lower dosage and express an interest in bumping it back up & see what happens!

 

[hardcandy]

Thanks, Maia! Yes, I'm not a super small person. I've been happy with 400, so it's good to know that it is considered okay for most.

 

[sjink]

L..... The eye problem is very VERY small, and many doctors believe the benefit of 400mg dose outweighs the very tiny risk of eye problems for a short/small stature woman.

For you, I'd recommend discussing with your doctor the increase in your symptoms since going on the lower dosage and express an interest in bumping it back up & see what happens!

Hi
It's pretty important to get eyes checked though on Plaquenil, I think every 6 months is recommended. I am 5'10" tall and on the 400mg dose got quite severe eye problems. I was checked not long after I started it and the eye hospital have said i must never take it again as the macular (??) had been damaged in my eye. I know the problems are rare, and they are reversible but I was one of those rare cases so best to be safe and have regular checks I think.
Sara

 

[Clare.T]

Sometimes higher doses of Plaquenil are used initially as' loading doses' but I'd say from what I read on forums that the more common problem is underdosing. Chloroquine is sometimes used to start off with for its speed and strength of action, changing over to Plaquenil.
Doses are reckoned to be cumulative: the risks of damage increasing after a certain number of years depending on dosage. Using more than the maximum recommended, dosage, being obese, being over 60 and renal or liver problems can increase the risks.

Dr Wallace says that:

Changes to the cornea can be noted in 50% of those on chloroquine, 5%-10% of those on HCQ, 5% in those on Quinacrine.
These changes are always reversible, usually mild & can come and go, and rarely require the drug to be stopped.
Changes to the retina are found in 10% after 10 years on chloroquine continuous use and can be irreversible. Retinal changes can be found in under 3% after 10 years continuous use of HCQ and are always reversible if right doses used and no kidney failure. There are no reports of retinal damage using Quinacrine.
Retinal changes due to antimalarial use must be differentiated from macular degeneration due to changing.

(Dubois p1164)

According to the same source current US recommendations are to have a baseline ophthalmologic exam and visual field test after which low risk patients do not need examining for 5 years. Patients at high risk should be evaluated annually
St Thomas' were very unconcerned even though I have been on antimalarials for decades and 500mgs chloroquine a day for over 10 years. All the same I get my eyes examined twice a year by an optometrist who seems to know his job. I had them done three times a year in NYC playing very safe.
It's a good idea to have an idea of what signs of damage occuring might be and to use an Amsler grid although the tests should detect damage before it is obviously affecting the sight. Of course if you are one of the few who are affected, it is 100% incidence for you personally so it makes sense not to take any unnecessary risks.


Clare

 

[marybeth59]

meds

Hi
I have been reading this thread with interest as my dose since diagnosis 2/3 years ago has been 200 and my rheumy has just increased to 400 as my fatigue and other symptoms (aches and pains; and depression) have worsened this year. She has suggested something for the depression, but I am unsure about that. What do others think?
Cheers

 

[KidsPT]

I was started at 400 mg (200 mg am and pm) and stayed on that for almost a year, was able to stop my NSAID for the most part. Then because I was feeling well we tried to go down to 200 mg/day. It didn't work and I went back up to 400 mg within 6 months as all the joint pain, fatigue etc...increased and I had to go back on NSAIDS. I am still trying to get off of the NSAID's if I can but I learned my lesson and won't go off Plaquenil unless something really serious crops up from it!

Nancy

 

[Lily]

Hi Marybeth,

It would be hard to find someone with Lupus that hasn't needed antidepressants at some stage and many as a long term med. Depression is very common amongst us, sometimes because of the demands of living with a lifelong chronic disease and sometimes because of how the disease can affect the brain directly. It's definitely worth a shot and your Rheumy would be the best one to help you find the right solution for you personally. The cause doesn't really matter they are both treated with anti-d's anyway.

I hope the increased Plaquenil helps you, it should but as you know it does take time.

Some anti-depressants help with pain control too, so that's an added bonus. Your fatigue may improve a little too. Some fatigue can be due to depression and some to the disease (and boy do we know about that! ) Unfortunately fatigue is one of the disease symptoms that never seems to go completely though

love
Lily

 

[hardcandy]

Mary Beth -

Re an antidepressant, I've found them helpful, so I would always tell people to consider them. Cymbalta has been especially good for me, and it often helps with aches and pains (used to treat peripheral neuropathy in diabetics in addition to depression).

Still, every medication works differently for each person, and most have side effects. I haven't experienced too many side effects on Cymbalta myself, but have had negative experiences with other antidepressants in the past. A final thing to consider is that some drugs have a withdrawal or "discontinuation syndrome" that can be uncomfortable and confusing, to say the least. Among them are Cymbalta, Paxil, and Effexor, although people have experienced similar withdrawal symptoms with other drugs.

Are you experiencing depression, or symptoms of depression (being depressed isn't necessarily a symptom of having depression!)? It's difficult with things like lupus - for me, I've been told I'm either depressed or have IBS for decades, or that there's nothing wrong. I'm not sure when lupus kicked in, and I do have depression and IBS, but there's an overlap in symptoms and it can be difficult to tease them apart. Still, if this is a doctor who knows you, and who you trust, I would at least investigate antidepressant medication further with her. Also, do people around you think that you seem depressed, or different? If you do have symptoms of depression, how long has it been going on?

My mom likes Cymbalta and says she won't go off of it primarily because of the pain relief she's experienced while on it! But I didn't notice much of a difference, so it really depends on the person.

Some antidepressants are more stimulating, like Wellbutrin. For some people, this is a nightmare of anxiety and panic, and they feel like they are going crazy, but for others (like me!), it's an awesome boost of energy and offers much needed focus.

I wouldn't say to try an antidepressant just as an in-between fix, until the Plaquenil kicks in, though.