Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Deb 27 on September 11, 2015, 07:42:23 PM

Title: Your dose of plaquenil?
Post by: Deb 27 on September 11, 2015, 07:42:23 PM
How much plaquenil do you take per day?? They have me on 400. I was curious b/c I thought I had read that when it gets in your system good, many docs take you down to 200. I was on 200 for a few months and felt nothing but they boosted it up to 400 and it made a difference in 4 months. My latest rheumy thinks I have a lot of fibromyalgia along with the sjogrens.  So, I dunno............... I have to go back to him in a few months. He's the only Dr. who doesn't think I also have RA. Two other rheumies and the radiologist who read my x rays thought I had an early stage of RA.........
Title: Re: Your dose of plaquenil?
Post by: Princess Tusi on September 12, 2015, 01:21:26 AM
Hi Deb,

I'm on 400, have been for the last 7mos and haven't noticed any improvement. :( My CRP continues to hover in the early teens, sicca sx worsening, arthritis flaring, fatigue....all despite 10mg prednisone daily as well ....
Ah well..

Caroline
Title: Re: Your dose of plaquenil?
Post by: Joe S. on September 12, 2015, 05:50:27 AM
None. It made me go blind for 6 hours on my first attempt.
Title: Re: Your dose of plaquenil?
Post by: Jasper on September 12, 2015, 10:13:50 AM
My Rheumatologist started me out on 400 mg of Plaquenil per day (200 mg in the morning and 200 mg at dinner time).

I have been on it for 2 years. She is not planning to reduce it.

It took a few months before I felt full effect.  I do feel it helps the muscle and joint and tendon aches and pains as well as the dryness.

Title: Re: Your dose of plaquenil?
Post by: Tharrell on September 12, 2015, 10:52:11 AM
I'm on 400 mg as well and take it as a single dose. I think it works more in the back ground and usually add on meds are needed. My former rheumy treated me for ra as well and my current one doesn't think I have it either because of negative bloodwork despite seronegative ra diagnosis by former rheumy at same clinic. Sigh
Title: Re: Your dose of plaquenil?
Post by: SjoGirl on September 14, 2015, 05:15:00 PM
Zero. Like Joe I suffered significant side effects on both attempts with Plaquenil, though not blindness.
Title: Re: Your dose of plaquenil?
Post by: deniselb on September 15, 2015, 02:12:41 PM
I came down gradually from the 400 that I was on for the first two years. I take ten pills a week - 400 mg. three days a week and 200 mg. the other days. It works out to 286/day.

My doctor said I could try dropping it again to find the lowest dose was that would control my symptoms, but I don't think I will. I'm already well below what is believed to be the safe dose threshold of 6.5 mg/kg of lean body weight, and since the drug may be protective I would rather make sure I'm taking enough of it.
Title: Re: Your dose of plaquenil?
Post by: eye2dry on September 15, 2015, 03:35:08 PM

I have taken Plaquenil 200mg twice a day for 5years.

I noticed a difference in fatigue and joint pain after 4 months on it.

However,  after a year methotrexate was added d/t hand, wrist and foot pain

b/c I also have RA with sjogrens.

I take 8 tabs of methotrexate all at once on Wednesday night.


shelly
Title: Re: Your dose of plaquenil?
Post by: Deb 27 on September 15, 2015, 04:57:56 PM
Tharrell, I've had the same thing with the on and off RA diagnosis.

They keep changing the supplier for my plaquenil and I think I go through an adjustment period every time.

I really think the plaquenil has some psychological effects on me too and I've heard that it can. I stress out very easily anymore.

But, it seems to work on my issues, so I guess I'll be on it for the duration. I have heard some get dropped down to 200 mg. We'll see what my rheumy says next time.

How awful that you had blindness in 5 hours Joe... That had to be terrifying.

Thanks for the replies.