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Reviews for Hydroxychloroquine to treat Sjogren's Syndrome
Review by lwinslow (taken for 5 to 10 years):
Plaquenil (hydroxychloroquine): Before Plaquenil, I would be in bed for days at a time, unable to move, excessive pain, ice cold, migraines, the whole gamut. My body felt ancient. At first the rheumatologist thought I had leukemia, then Lupus and rheumatoid athritis and finally biopsies started giving us a more refined treatment plan. With this medicine, I am in much less pain. I can walk for an hour at a time. I can shop for groceries again. I feel like I have a life again.
I have had brief periods, never more than a month without it, and I know that life without the benefit of Plaquenil is no life at all. Yes, I have to see the retina specialist but in all this time, my eyes are fine. Don't hesitate to try it even though new treatments can be scary!
hydroxychloroquine: I ignored my doctor for months when he wrote this prescription. I finally started it after an eye doctor lectured me because I was seeing him for an immune response eye infection. He gave me a good talking to and agree with rheumatologist that I do in fact have the Sjogren's. So I started it and I can't believe I wasted those months not taking it! It is the only thing that has helped me! The only issue I have is I have been on 200mg 2 tablets twice day for about 6 months, and now they decreased it to 1 tablet twice a day. I'm a little nervous of the decrease because I don't want all that pain back!
hydroxychloroquine: I have been on generic hydroxychloroquine now for 2 years. I have primary Sjogrens and secondary diagnosis of Fibromyalgia. Apparently I had Sjogrens for over 10-15 years before doctors figured it out. If the Fibromyaligia hadn't hit me 3 years ago I guess I would still be suffering. I take 200 mg twice a day and it has helped me so much. I use it with Savella for my Fibro pain. The only problem I have is a slight buzzing or ringing in my ears. But I can work full time and have a normal life. Still get occasional pain in feet and legs but all and all feel great.
Plaquenil (hydroxychloroquine): It has taken about 6 weeks for this medicine to work, the benefits have been subtle. I noticed that I have been able to do more, get out more and have even cut back on a dose of painkillers, my head is clearer - I just sort of feel different, not miraculously different or anything, but just more my normal self.
I am still severely allergic to the sun or any UV exposure and can be sick for days if I am not careful or if I do too much but I do believe the Plaquenil has helped and I have been on it for 2 months now so look forward to further benefits from this medicine.
Only side effects are erratic blood sugar, if I don't eat regularly I go hypo - badly hypo, although my doctor said he has never heard of this, so perhaps it isn't related.
19 users found this comment helpful.
Plaquenil (hydroxychloroquine): I have taken Paquenil for approximately 9 months and have started getting red peeling sores on my legs, thought it was psoriasis, but now I am unable to show my legs because the sores are so many. Stopped taking medicine for the past week, will be going to the doctor today.
Plaquenil (hydroxychloroquine): Plaquenil has given me back my quality of life. I think I've been on it for about 3 years now. However, I've recently stopped taking it as I am having flashes in one eye and don't have the money to see a retina specialist - or an eye Dr. for that matter. Now that I have stopped the medication, I am back to having constant pain throughout my body - especially in my joints...and in my bones, and I am exhausted and sleep a lot without feeling rested. As soon as I get my eyes checked and if my exam shows good results, I will be back on Plaquenil immediately.
23 users found this comment helpful.
Plaquenil (hydroxychloroquine): Was diagnosed with Sjogrens syndrome several years ago and prescribed Plaquenil. While taking Plaquenil I had no difference in my symptoms. After doing years of research I believe that I may have been misdiagnosed and actually have a parasitic infection (not malaria)!
Plaquenil (hydroxychloroquine): This medicine has changed my life. I'm a nurse with primary Sjogren's Syndrome. It took 10 years for a diagnosis and another 10 years for a rheumatologist to prescribe Plaquenil. I have never felt so good. Minimal joint point, lots of energy, able to sleep at night, what could be better! I was able to complete an eye exam for the first time in 9 years. I'm enjoying life pain free and with energy!
31 users found this comment helpful.
Plaquenil (hydroxychloroquine): When I was diagnosed with Sjogren's it was advised I start taking Plaquenil. I avoided it for months because I felt I had enough symptoms already without any side effects from medication. However it became quickly apparent that the fatigue and pain were not going to allow me to continue working being in my twenties at the time, this was NOT an option so I gave in and gave the Rheumatologist my consent.
6 years later, I have no complaints. I work full time and on the occasions that I forget to take my Plaquenil for a day or two, I notice a substantial difference; pain, unbearable fatigue, etc. and overall being unable to find energy enough to live my daily life. I am completely derailed without it.
47 users found this comment helpful.
Plaquenil (hydroxychloroquine): I have been on Plaquenil 200 mg twice a day for 6 years and it has helped me tremendously. I couldn't get up from a chair or close my fists after being diagnosed with primary Sjogrens Syndrome. It took about a year, and I'm 90 % better. I am very careful to have a thorough eye exam every year to monitor potential ocular side effects. It is worth a try and the side effects are definitely less than long term steroid use.
35 users found this comment helpful.
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