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Hydroxychloroquine (plaquenil) question

Posted , 15 users are following.

mce43511
mce43511

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.

0 likes, 37 replies

37 Replies

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  • shaq26875
    shaq26875 mce43511

    Posted

    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  

     

  • leslie67316
    leslie67316 mce43511

    Posted

    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.

    • mce43511
      mce43511 leslie67316

      Posted

      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?

    • chris08587
      chris08587 mce43511

      Posted

      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.
  • Guest
    Guest mce43511

    Posted

    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....

    • mce43511
      mce43511 Guest

      Posted

      I'm sorry to hear you're having alot of trouble with your joints. Has your Dr mentioned any other treatment for the pain? This illness is scary for me, the thought of not knowing what's next..

      My biggest problem is the fatigue, the pain I had in my joints has improved over the last month so I'm hopeful the meds will work for me. I'll keep you in my prayers.

    • leslie67316
      leslie67316 mce43511

      Posted

      Thank you for your reply. I keep reading new info about this drug and I'm just starting day 3. Its kicking my buy right now trying to stay awake. I wasnt aware it lowered your immune system and a lot of the side effects from it are ones I'm trying to get rid of not worse so I just dont kno. Plus it's not cheap.

    • mce43511
      mce43511 leslie67316

      Posted

      I'm taking it in hopes it helps with the fatigue. What are your symptoms? I heard about the eye side effects but not that it lowers your immune system. I gotta ask the Dr about that.

    • leslie67316
      leslie67316 mce43511

      Posted

      I've had fatigue, sleepiness, joint pain at times, dry mouth, eyes, skin, hair falling out. Some of that was my thyroid med needed adjusting. I have Hashimotos. And my blood work indicated antibodies, etc.

  • Guest
    Guest mce43511

    Posted

    Ahh, thanks for your prayers, Yes the fatigue is one of the first symptoms that originally took me to my GP and then he started on the long road of diagnoses, he felt I had Lupus but the hospital have said it's Sjogren's.  I remember some days I could hardly do anything, I would get up, do limited jobs around the house and slump back onto the sofa. But, I found this phase did pass and inbetween these sleepy/fatigued periods I was almost normal!.  Last winter was so bad at one point I felt I wouldn't make the spring, my brain can't get around the fact that Plaquenil lowers your immune system which allows us to get all manner of other illnesses, I can't go anywhere without 'catching' something, I'm always ill with a sore throat, cough, chest infection after mixing with people after a few days...I'll run the risk of my joint pain and dryness as against being so 'ill'...I'll let you  know the outcome..  smile 

    • mce43511
      mce43511 Guest

      Posted

      That's the type of fatigue I've had since March. It is encouraging to hear yours eventually lifted on it's own, I can only hope and pray mine gets better too. I didn't know plaquenil lowers your immune system, I keep reading different things about it so all this information can get overwhelming.

      I hope you get some kind of relief now. Do you take any supplements for your pain? I started taking curcumin about a month ago also so maybe that's helping me. I also take vitamins b12 and D.

    • Guest
      Guest mce43511

      Posted

      I was advised by the consultant to take a high dose of Vitamin B Complex, which I do and I think this has helped my energy levels. I also take Ibuprofen and paracetamol this is all I can take and I take it on a daily regular basis.  I can't take Curcumin but I also take Omega oil capsules and Glucosamine Chondroitin  MSM.  My consultant doesn't think they do anything but it's all worth a try!  I'd love to read some positive news from anyone about success living with Sjorgens and not taking any medication other than eye drops  (which I use) and natural supplements   It's so good to read others journey, thank you.  .  

    • mce43511
      mce43511 Guest

      Posted

      I also take vitamin b12 with b complex. What's your dosage?

    • margaret22116
      margaret22116 mce43511

      Posted

      hi, don't worry about plaquenil reducing your immune system. That's the point of it really. When you have an auto immune disorder your immune system is too active. Part of the treatment is to lower it so that it prevents inflammation. I hope it works for you. It's been great for me. 

  • shelia22921
    shelia22921 mce43511

    Posted

    It takes longer to get over any kind of infection than other people, I go from one to another, was told to take the Hydroxychoroquine three year's ago, I have not started it yet, I have low white cell blood count so I catch things easy, Doctor told me it could bring it back up or lower it even more, I sure don't want it no lower, I deal with joint pain wrist, knee's, my shoulder, fingers, jaw, all over pains in a flare. everything is dry.  I would also like to read success stories, Thank you for posting.

    • mce43511
      mce43511 shelia22921

      Posted

      I believe the Hydroxychoroquine has helped my joint pain. It wasn't bad to begin with though.

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