Courage to start meds but why high dosage

[Suelaw]

Thanks you guys who helped me reason not to freak out over side effects of hydroxychloriquine and because of your advice I've started phew! I just checked leaflet one more time and it said adults take 1 to 2 (200mg) a day I've just started and I'm on 4 tabs a day 400mg is anyone else on such high dosage ? I asked pharmacist and he reckons its not right and I should speak to a doc so made appointment for fri. The weather amazing here in Scotland it's a miracle hehe.

[Suelaw]

Sorry meant to say 4 tablets is 800mg a day!

[gurs]

No, My rheumy who has large autoimmune practice, and has SS herself, said no more than 400mg a day. ALl my other docs said they same thing. Would worry about the long term side effects, especially vision.

I wouldnt listen to that doc..sorry..just my opinion.

Any new med good idea to start low dose first. I would start with 200mg a day and see how you feel from there.

Gursie

[Blue Hydrangea]

I agree with Gurs.  I wouldn't start with 800mg either.  I got my prescription in April and looked at it every day for six weeks because I was so afraid to take it.  I did a lot of research and everything I read said that 400mg is the "typical" dose and far less likely to cause complications.  The amount you can handle safely also has something to do with your weight and I believe they said that 400mg is a safe (as safe as can be)does for someone weighing 135 pounds.  Since I weight more than it gave me more confidence to start taking it. 

I would definitely do some research on dosage and then call your doctor and ask why starting with 800 vs. 400.  But I would definitely start with only 400. 

I might add that the Plaquenil is already making a difference for me so I'm really glad I finally worked through the anxiety I was having about taking it. 

Good luck!!

[LadyDi]

The maximum dosage of hydroxychloroquine that is prescribed by doctors in the U.S. is 400mg per day. That would be 200mg twice a day.

I would be concerned about taking 800mg a day. I think that I would talk to to my doc about this high of a dosage.

Take care.

[A66eyroad]

I agree with all the others, and I've read that 400 mg is the very most anyone should take, that your weight doesn't matter after 135 lbs.  Apparently it has to do with lean mass. muscle mass, not fat.  Plaquenil isn't absorbed into adipose tissue.

I've tried to do a search to see where I've read that, but I really can't find it.  Here's something I found, though.

http://toddzarwell.com/journal/2011/5/13/daily-plaquenil-dosage-crunching-numbers.html

[Sleepy In Seattle]

I have never heard of anybody taking 800mg/day - that can't be right.

Do be aware that many people have problems with it in the first month or so - mostly stomach upset, and weird dreams. Always take it on a full stomach, preferably at breakfast rather than right before bed (helps with the intense dreams). Some people have more trouble taking it with dairy products so they avoid them for a while. After 4-6 weeks, the side effects usually go away as your body adjusts to the medication.

Also, don't expect to see results right away - it has to build up in your system for 3-6 months before it become effective.

Be sure to go for eye exams every 6 months - retinal toxicity is EXTREMELY rare, but you should guard against it.

Of all the medications used against autoimmune diseases, plaquenil (hydroxychloroquine) is probably the "mildest" and most well-tested. It's a good first like of attach on the disease. Not everybody can tolerate it, but it's worth a try!

[quietdynamics]

Rheum had me wean on Plaquinel.
200mg @ bedtime..so if there was any stomach upset,etc., I would sleep through it.

Like A66eyroad, the research I have read states 400mg max for Sjogrens.
Same when reading Ophthalmologist research with statements regarding patient weight/mg.
*They usually note that some Drs. forget about this correlation.

Happy to hear you taking this line of defense for yourself.

And hoping you are getting some downtime during the sale of your home....run away for the day!

[Styx]

Definitely a mistake, unless you are 9 feet tall

Styx

[finallyadx]

I would agree with everyone else...400 mg - one tab in am and one tab in pm - both with food.  As others mentioned it can cause eye damage (long-term mostly I believe), major stomach distress in some folks and wierd dreams at first.

I would call the drs office - I do not think you need an actual face to face visit to clarify the dosage - they should have it written in the record and you should request to speak directly with the dr, not the nurse or receptionist.

Wishing you positive results.

[Dee]

ditto the above, my understanding as well re 400mg/day

[Suelaw]

Thanks I only took 400mg today can't believe I took 800mg my first day and that was the advice from the specialist!! I'm 130lb so I reckon defo no more than 400mg. Went to normal surgery today and receptionist checked my notes and it defo 800mg then a doctor came out and she said to half it and that she would call the specialists secretary to find out why she gave me high dose and if I don't hear anything stick to the 400mg. My faith in the care under the specialist has dropped big time!!
Thanks for your advice it's a massive help to a newbie like me:-)

[irish]

I would dig my heels in and call the doc up and ask about this dosage. In the US we use the Plaquenil 400 mom as the standard for treatment of autoimmune diseases. When you go higher you get into the recommended dosage used in treating Malaria. These higher dosages are much more apt to cause the eye problems that you hear about.

If your doc still says 800 mgm I would ask for a second opinion. He may have meant to write something else and it just came out wrong. If you pharmacist thinks this is not correct you can use this as a backup for your decision to question the dosage. Good luck. Irish

[Suze]

I have been told by a retina specialist that retinal toxicity from Plaquenil partly depends on the cumulative dose taken over the years, and that there is a maximum cumulative dose per kg of lean body weight (I don't remember what it is). So, taking that high a dose could very well reduce the number of years that you can stay on this medication.

[Scottietottie]

My opthamologist says that he's been practising for over 20yrs now and in all that time he has only see one case of eyes damaged by Plaquenil. He says its very rare. He works in the eye dept. of a busy hospital so he sees a lot of people.