Hydroxychloroquine (plaquenil) question

Hi. I’ve had Sjogrens for 7 years but think it’s really much longer, maybe 20 years. Besides the fatigue and dryness I have small fiber neuropathy. My neurologist has me on Azathioprine which is an immunosuppressant. I feel I haven’t progressed with the neuropathy so that’s why I take it. I also am on Facebook with a Sjogrens group. Lots of good info on there so I would recommend it. According to many on that site Placquenil is not an immunosuppressant and won’t compromise the immune system so shouldn’t make you more susceptible to catching colds etc. 

i rarely get sick with colds sore throats etc despite being on Azathioprine so I guess I’ve been lucky. 

I recommend the Sjogrens site on Facebook. 😎

Hi MCE43511,

I have been taking hydroxychloroquine for 13 years.  For most of that time I was taking two 200 mg tablets/day.  This year my opthamologist recommended that I drop to 1 tablet/day due to new information they have found with regard to the effect this med has on the eyes.  So far, I have had no negative effects on my eyes.  As for the effectiveness of this medicine, I think it has helped me tremendously.  I have been in pain every day, true, but I have the stamina to get things done in my life and keep going, and my bloodwork comes back good.  About 5 years ago the doctor added Methotrexate .3 ml/once/week.  This has kept me stable and my blood work keeps coming back good.  Three years ago I became vegetarian and then last year I became vegan.  Now I eat a whole plant food diet with no added oil, sugar and salt (well I do use some salt).  This has had a profound effect on my health.  Even while taking the Methotrexate, I am getting great blood tests.  So I asked my dr. if my Primary Sjogren's could be in remission.  He said it was possible and if the blood work keeps being good, he will decide what to do.  I know there is no cure, but if I can just maintain this level, I feel I am ahead of the game.  I am 71.  I know there is no cure.  Everyone around me is on handsful of meds.  I don't want that.  I have already gotten the most from the hydroxy and the Methotrexate--I am happy.  My friends who are my age are not in as good shape.  They have all the normal problems of these days, acid reflux, diabetes, high blood pressure, etc., but I have an inner feeling of health many days.  I still do have some days of fatigue and when I do I worry that it's back, or that they will say I have Lupus too, but no news is good news and I keep on going.  I would like to say that I think the pain was greater in the beginning.  The flares were closer and I just felt sicker.  I also believe that after a time the mind 'blocks' out pain so maybe I am just living with the same pain.  At any rate, I wanted to let you know this so you will not fret so much.  

I think the hydroxy also helped me a lot with the dryness of the eyes.  I can tell over the last couple of years I am a little  dryer than before.  My skin has been hard to live with.  I have bottles and bottles of lotion that I have all over the house so I can keep putting some on my hands.

One other thing, after a few years on the hydroxy, my hair got curly, just like I had a perm.  It's great because I keep it short and never have to do much with it!

I hope you are able to keep on with the hydroxy long enough to see some benefits.  I would try to give it a year at least.

Yes, thank you.  I have my exams every 6 months faithfully.