Well, last time I went to my Drs I enquired about plaquenil and was informed that although it is now in use in Japan it isnt available for Sj?gren's therefore I wouldn't be receiving it. I was also told if I import it then my dr can't monitor it, nor can he do the eye tests(not sure exactly what eye tests) that I need before starting it. So basically if I decide to take it I'm on my own.
Call me crazy but Im seriously considering importing it and seeing how it goes? Maybe I'll find a Dr to assist too if I'm lucky.
Now I only have a dry mouth, dry eyes, nose and stomach issues and am not %100 sure that I need it but I've also heard it can help slow progression and I need all the help I can get. I'm aware it can take months to take effect but I think it's worth the chance due to my rapidly progressing symptoms.
My problem lack of information about it. Main being dosage, I've read on here ppl are usually on 200mg or 400mg a day.
How is that decided?
Any other relevant information would be helpful.
Thx
GgcJap
The eye tests referred to are field of vision testing and thorough retinal and macular visualization, once before starting the drug as a baseline, and every 6 months during treatment to watch for any changes, like crystalline deposits or macular changes, which could be caused by Plaquenil (the incidence of these side effects is low, but the changes are irreversible). It isn't a drug I personally, would self prescribe, simply because of the monitoring required, but I'm not in a position that I have to consider it. Is there any chance you could make twice a year trips back to Australia for the purpose of obtaining a Rx and following up? The other option would be to find an ophthalmologist who understood the need and agreed to monitor your eyes.
Dosing is usually standard 200 mg twice daily, but exceptions are made for low body weight and intolerance. 400 mg total daily is the dose arrived at for a weight of 60 kg, and doses higher than that are considered unnecessary since 400 seems to provide adequate coverage for people of higher weight. The actual dose calculation is based on the risk factor for hydroxychloroquine retinotoxicity being a daily dose that exceeds 6.5 mg/kg, based on ideal body weight (the drug is not absorbed by adipose tissue). Obviously people under 60 kg (132 lbs) would take a reduced dose according to their weight. Reductions are also made when people simply can not tolerate the higher dose due to dose related side effects.
It's very helpful to titrate on to the medication, starting with doses as low as 100 mg daily (half a tablet) and increasing as tolerated, and always taking it with food, although several members report that dairy products taken with it can cause an increase in the fairly common side effect of gas. If tolerated, the total daily dose can be taken at one time, or divided into two doses.
I'll reinforce the thought of going back to Australia for diagnosis / treatment before trying to treat yourself with serious drugs and without doctor assistance.
Linda196
Thanks for the wealth of information, it's a lot to digest at once but I will before I make any final decisions. Unfortunately I only go back to Australia once every 2 years due to finances and I'm not even sure I can do that anymore with the costs incurred now. I would love to go back twice a year but then I would still have to find a good dr and then get diagnosed. My best bet is to find a Dr in Japan that is willing to monitor me I'm guessing. It's definitely not something I want to go into alone but I also feel time is against me.
Pete0211
I agree with you and would love to but it's not financially possible for me. I'm seeing a new dr on the 1st maybe he'll be able to help or help find someone that can.
Thx for the help/words of advise guys, I appreciate it a lot.
GgcJap
I am just curious if there are some doctors practicing there who are from Australia or the United States who could work with you more easily. Just a thought. Irish
Another thing I had never thought of and will def have to look into.
Thx Irish