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Sjorgrens and Hydroxychloroquine

Posted , 6 users are following.

mandy95
mandy95

I have been on 400mg of Planquenil for 7 months now, but for the last 2 months I have been experiencing muscle problems in my legs, it is so painful that I am yelling out with pain.  I stopped taking the Planquenil and the muscle problems stopped.  My GP (American Dr) advised that the Planquenil was the cause of my pain, although my GP (English) advised that he did not think it was the medication.  I am now confused because once I stopped the medication my pain went away?  I am now waiting to see my RA but have been waiting for 2 months now, and been on no medication since.  Now my bloods are really high again and all my pains and symptoms are back.  As anyone else had the same issue with this medication?

regards,

Mandy

1 like, 9 replies

9 Replies

  • jefferson89822
    jefferson89822 mandy95

    Posted

    Hi Mandy95. I believe this drug is HYDROXYCHLOROQUINE. This was the first drug i took whe it was confirmed i had Primary SDjogrens Syndrome. However, within 6 weeks i was taken off it because i was rapidly losing layers of skin on my inside of my hands and bottom of my feet. I then went onto Methotrexate. I have heard there are quite a few side effects of HYDROXY... but maybe you'd have noticed anyway over the initial 5mohth period. Could the Planquenil you were taking, have had a reaction with any other medication you possibly had begun taking around the time you had the leg pains, month5 onwards?
    • mandy95
      mandy95 jefferson89822

      Posted

      Hi Jefferson,

      No I was not taking any new medications at the same time.  How did you get on with the Methotrexate?

      Regards,

      Mandy

    • jefferson89822
      jefferson89822 mandy95

      Posted

      With Methotrexate, it was tough at first. I began vomiting frequently after a month of taking it, my platelets were dropping very low, i had neutropaenia and so i came off for a couple of weeks. My  body wasn't ready for it. The hospital agreed i should take 5mg folic acid up to 6days/week, but not on the day i take the Methotrexate. This worked (so long as i have frequent blood test) 
  • lily65668
    lily65668 mandy95

    Posted

    Hi Mandy, Don't know a lot about Plaquenil as I've never taken it. I do, however, know about polymyalgia rheumatica (i.e. muscle pains associated with RA, and another symptom of SS) as I suffer from it!

    I admit it sounds a bit suspicious that the muscle pains seemed to start after you went on Plaquenil and stopped when you came off it, but are you 100% sure of the timing? As I've described elsewhere on these forums, my own SS symptoms come and go, starting and stopping abruptly and wandering all over my body, so if it happened to me I'd suspect a flare-up of polymyalgia.

  • tracy79802
    tracy79802 mandy95

    Posted

    Hi Mandy.

    I recently went off of planquenil after being on it for the same amount of time as you and feel a lot better. I've only been off of it for a month now so I can't speak to the longer term effects of not taking it. 

    For me, I'm happy to not be taking it because my eyes would get sore. Oddly enough, when I was taking it, any spider bites I'd get (I live in Oregon where there are lots of spiders) would take a really long time to heal. When I was taking it they'd only take a week to heal. Before being diagnosed with Sjogrens, spider bites were a non-event. That's really the only positive thing I can say about planquenil so far. 

    Unfortunately, and I'm sure you're probably aware, Sjogrens is an isidious disease that ebbs and flows. The only thing we can do is to eat healthy, drink tons of water, work out (when you're not exhausted), and take care of your teeth.

    I keep a journal of my symptoms and treatments so I can identify common themes when possible. 

    My hope is to stay off of planquenil unless necessary.

    Hang in there and keep us posted on your planquenil journey. I've read that it has been very helpful for a lot of people. 

    • lily65668
      lily65668 tracy79802

      Posted

      OMG Tracy! Spider bites? Remind me never to go to Oregon, I'm the world's worst arachnophobe! I've had enough problems with spider bites here in northern Europe so I can't imagine what yours must be like.eek
    • tracy79802
      tracy79802 lily65668

      Posted

      Lily, right? lol! 

      Oregon is incredibly beautiful and spider bites wouldn't be an issue if not for this lovely Sjogren's disease. But you're right, if you don't like spiders Oregon wouldn't make your top 10 destinations. cheesygrin

  • shira75032
    shira75032 mandy95

    Posted

    Hi Mandy, I've read many people experienced muscle pain they never had before when on Plaquenil and that it's a known possible side effect that no one mentions.

    I personally didn't last a week on Plaquenil even at 100mg because of other side effects.

  • Sweetness
    Sweetness mandy95

    Posted

    I am on the same Meds I have no problem . Can I ask you  if you wear flat shoes that could be the problem I had that experience  my legs used to hurt once I sit down I was unable to get back up and my feet use to hurt so much until my RA suggested I change my shoes . I am using fit flops now and never got the pain again . Maybe you can try that.

      your blood work will be high without the Meds 

    regards

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