Hydroxychloroquine (plaquenil) question

Hi Mce43511

I wish I could tell you that treatment fixes you, but unfortunately that’s not what I’ve experienced. I’ve been diagnosed for 2.5 yrs and it’s been a lot of ups and downs. Even when you think you are on the right regime, you get a virus, or experience some stressor that throws you into a “flare”. I’ve learned to live one day at a time. Enjoy good days, and acknowledge them so you can hold on to them when you are feeling terrible. I don’t want to be a Downer, but that’s been my experience. 😢

- hello to you i have had Shogrens

now diagnosised for 24 years I can only tell you about my experience back then I didn't even have a computer not much was known about it. The first two years was really bad i had severe dryness in my mouth I had huge bumps on the side of my neck the fatigue was shocking and I had about 4 month old baby and I was 31. I lost 4 stone . Everyone kept saying how good I looked but on the inside I was crying I drank so much water due to the no Silvia in my mouth. I thought I was going to drown my kidneys . It was a horrible time I didn't take any medication at all and slowly after two years the symptoms settled down. A lot of medication you take can try your mouth so I didn't want to take any. I know that it is scary but for after the two years i went back and got a degree in nursing and I travelled the world it was not all gloom and doom for me although the fatique was bad at times I had to give up work in the last 5 years due to the fatigue . And i have had recuring phumonia one bout put me in hospital in intensive care for 11 days in an induced coma but to the day I do not take medication at all except one sleeping pill I find I have sufficient siliva in my mouth I take a lot of vitamins and also suffer from arthritis and the fatigue . I hope you do well on your journey with this disease do reserch and diet is very important i lean towards the paleo

Hi. Understand your fears. I have Behcet's not Sjogren's which is very similar. I use plaquenil because I had dreadful pain in my feet. Plaqienil worked wonders for me. Pain is gone and a lot of inflammation has settled with it. It also helps my fatigue. I hope it works for you.

Hi there. The worst I have felt when I was newly diagnosed sounds an awful lot like your experience. Awful joint pain! I decided to take the plaquinil and I feel it helped me pretty quickly.  I am so much better now! No way to tell if it was the plaquinil but it sure didn’t hurt me. Hopefully you are just having your worse flare and you will soon start feeling better. That’s how it’s been for me. 😀

I developed Sjorgens three years ago. My first flare lasted four weeks. I thought I was going to die. Many severe symptoms including joint and muscle pain. I was on steroids for a year and I decided to get off. It did help. I was in the hospital twice last summer because of severe flares. My last flare was in Jan. and it was not bad. I have not had one since. Fatigue is not as bad as it was. I can live with it. I am doing much better however I had such a severe dry mouth I lost all of my teeth 3 weeks ago. I am now dealing with severe dry eyes from Sjorgens . I have a pterygium in both eyes. It seems like when everything is getting better something else happens. I do think the paleo diet did help with the symptoms. I encourage you to try it. It may not be the happiest diet but it does seem to help. As for your fatigue I hope it lessens as mine did. I wish you the best. Take care of yourself. You know that our emotions has a lot to do with this disease. Being optimistic and hopeful has a positive effect on Sjorgens. Cymbalta has also helpled me. May God bless you.

Hi Mce

?my flare got progressively worse (swollen joints, tendons with debilitating pain) after  which I decided to restart plaquenil. It took 3 months to feel any noticeable benefit. 9 months later the swollen tendons in palm re appeared and painful wrists joints on excessive use of hands (like trying to unscrew a bottle lid). Went to rheum..who put me also on gupisone and methotrexate I resisted from taking the latter until palms got really bad...after 3 weeks (was taking 7.5 mg once a week) I got heavy bronchitis and UTI (unspecified origin) Apart from stabbing needle like pain (off and on ..which I assumed was peripheral neuropathy)  I had no symptoms of UTI. Waiting for culture results. In the meantime I have been advised to stop the methotrexate. 

?For me the plaq did work albeit not for a long period of time.  Just recovering from bronchitis now and I certainly won't be taking the methotrexate again (will have to live with swollen tendons)

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