I'm newly diagnosed with sjogren's and although I haven't been on the medication for long ( 2 weeks) I'm desperate to feel better. I came down with the flu 5 months ago and never recovered.
I know it takes months to build up in your system but I'm terrified that it may not work and I've spend the entire year feeling horrible. The worst symptoms are fatigue and joint pain. I can deal with the dryness but I'm just miserable.
I guess I just need to vent and hear success stories from others that have dealt with this longer. I'm praying these meds work.
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.
I just need to experience a good day once in a while. I know my life has changed and I need to make adjustments. How can I get out of this flare, it seems to be long lasting or is this normal when newly diagnosed? Thanks so much for responding.
Your story gives me hope. I'm 34 and can only pray my symptoms improve either with this medication or on their own. I want to start a diet that can help it's just so hard to grocery shop or cook with this fatigue. I have 3 children & a husband they help with everything except cooking so I guess I have to push myself. Thank you for your encouraging words.
Yes, I've read plaquenil helps with alot of AI diseases. I just hate it takes so long to build up in your system before you know if it will work for you. I know this is an overrated question but how long did it take before you noticed any improvements with fatigue or pain? Thank 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. 😀
Thanks Chris. I'm hopeful after this initial flare I can better manage my illness. I pray I never feel this bad again.
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.
Thank you Susan. This initial flare has been going on for 5 months and it's taking a toll on me. I can only hope and pray my symptoms subside like yours did. I'm sorry to hear about your mouth and eyes, I hope you get some relief soon.
So sorry I never noticed this question. I can't specifically remember but a few weeks after starting I was noticing a difference and particularly when the dose was increased to two a day from one. I hope it is working for 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)
Shaq26875 I'm sorry to hear you're still having pain. I hope they figure out something for your pain soon! Did you have any fatigue symptoms at anytime?
Hi Mce
I am not sure if I have / had fatigue. As I work I get up every morning at 5 am and at work before 8 am (desk job though) . After 5 pm when I am home I tend to doze off in the recliner chair watching TV....so is it fatigue or just age and waking up early.
At weekends when I do go to the mall for a few hours ...on return home I fall asleep on my recliner . ..again ..age related ? I am 66
I'm just getting ready to start the generic plaquinil for some mixed connective tissue disease (dint know which but there's inflammation) so I'll follow. I'm kind of anxious to take it myself. I'm anxious to hear how others are doing on it.
It does take awhile to work? What is the average?
I hope it works for you. I'll be on it for 4 weeks this Thursday. Praying it kicks in soon. My worst symptom is fatigue. How are you feeling?
I really think it has helped me. Fingers crossed I am in “remission “. I feel like it helped me in a month tho I know it can take 6 months. I researched the drug, basically learning that they have no clue why it works...what convinced me to take it is that is supposed to stop progression of the disease. I think it wise to take and I have a feeling it will “kick in” for you soon.
Hi, I'm new on here and have had Sjogren's for 3 years now and the last two years I've been on Plaquenil tabs. Both winters have been tough as I've had flu and very bad chest infections, (I have the flu jab) which really is worrying as I also have Asthma, so the reason I took the Plaquenil was to help the dry eyes and dry mouth and help stop the inflammation in my joints, it worked for a while, but my joint pain is very bad especially when I have a flare-up. Taking the Plaquenil to my mind will lower my immune system and allow me to get even worse Chest infections so I'm stopping taking it, I have only just done this and on my own back..... I see my Rheumy every 5 months and really the Plaquenil hasn't done so much for me as I hoped. So I'll let you know the difference I find once this drug is out of my system...at least (I hope) I may get through a winter without being so very ill....