Migraines after stopping plaquenil?

[heidiaj]

Hi, folks!  I haven't been on here in awhile.  It hasn't been a good year.    Went to Mass. General Hospital at the beginning of the year for a definitive diagnosis.  I was told I have Sjogren's, Hashimoto's & fibromyalgia (no big news). I was taken off plaquenil because the doc said that studies had shown that it wasn't really effective for Sjogren's patients.  I started seeing a new rheumatologist in May.  She put me back on the plaquenil, although I hadn't really felt any big changes while I was off it.  She said, "let's try it again." I saw her 10/20, and we decided it hadn't really changed anything with my joints, which is what it should help the most.  I've been trying to come off some of the many meds I've been on, so we decided to stop the plaquenil.  She said I could just stop taking it.... no need to taper.  That was a Thursday.  On Sunday night, I started with a TERRIBLE migraine.  I used to get them a lot when I was younger, but don't really get them much if at all in the last few years.  It was so bad that I thought I'd have to go to the ER.  Contacted my primary care doc, who gave me a script for 800 mg. ibuprofen, which used to help in the past. It didn't touch it.  Today I woke up & my jaw was aching.  Does anyone have experience with going off plaquenil & having bad headaches??  I suppose it could be a coincidence & something else is causing the headache (others have told me of having one in the past week...perhaps due to season change?).  I get discouraged....there's always something "new," and not in a good way...

[Tharrell]

I am so sorry you are going through this. I have stopped plaquenil once before without any adverse effect. I too have migraines. Plaquenil does stay in your body a while before it is completely cleared out. Maybe it has to do with the season change as was suggested since we are going into colder and drier air? Maybe doing a sinus rinse once a day would be beneficial? Hopefully somebody else will chime in with more knowledge than me!
Good luck!

[SjoGirl]

I have had migraines on and off of Plaquenil. I never had migraines before going through the change and had horrific ones, requiring ER visits, when I first became ill.

I tried Plaquenil twice and had headaches, myoclonus (kind of like mini seizures), and many other side effects both times so got off of it after six months. I did not taper off and felt better within a few day to a week after stopping (in fact I felt great for about two months after quitting).

I started having ocular migraines and some near migraines about six months ago and the myoclonus came back even though I've been off of Plaquenil for over a year. I have had a lot of nerve pain from spine and disc issues as well so have been taking Gabapentin, which helps with the migraines.

[heidiaj]

Thanks for replying, ladies!  I'm beginning to notice that sometimes the migraines come on if I've been on the computer (but one also came on while I was out shopping awhile).  I don't have trouble seeing, but I'm overdue for an eye exam so I got an appointment for later this week.  I know eye health is imperative for us Sjoggies.  I also didn't realize until I spoke with my primary doc that my hysterectomy does NOT prevent me from experiencing menopause, since I still have my ovaries!  So perhaps the headaches could have something to do with that, too.  SjoGirl, I am curious about your experience with myoclonus.  I was diagnosed with "psychogenic seizures."  I wonder if they could be myoclonus...? How did you come to have that diagnosis?  Again, thank you SjoGirl and Tharrell, for taking the time to comment.

[heatherk]

Hello. I am newly diagnosed so I just started taking Plaquenil (and prednisone, and exovac) a couple of weeks ago. I am very surprised however that your first doc took you off of it. From everything I have read online and from what my rheumatologist said, Plaquenil is *the* first-line treatment for Sjogren's (with prednisone to help cover the time between diagnosis and when Plaquenil actually starts to help).

She also said it will take months for it to take effect and for me to even start to feel a difference, and years actually before it works in full force. So a few weeks or even a couple of months - even if it doesn't seem to be having a positive effect - probably isn't long enough to positively rule it out. She thinks/said that it affects newly made immune cells and helps them to not identify bodily cells as foreign, but that it doesn't affect older cells whose biology is already set. And she said our immune cells live for an average of 5 years. So the 'training' process with Plaquenil is very slow to take effect. I don't know about this theory as I haven't been able to find any more information about it, but it does make sense given the fact that they do say it takes months if not a year or more to feel better on it.

I don't know about your migraines but I hope you feel better soon! I would maybe encourage you to keep doing the plaquenil regardless and give it enough time to work. Every body's body is different however and it apparently doesn't necessarily help all Sjogren's sufferers and only you know your own body well enough to be able to decide.

[heidiaj]

Hi, Heatherk!  Thank you for weighing in on my question.  Before I was taken off plaquenil, I actually took it for years....so many that I can't even tell you how long it was!  It's been 9 years since there was first an inkling by doctors that I had Sjogren's.  I have been on a lot of meds, and I'm trying to evaluate which ones are really making a difference.  I wanted to say that it sounds like you have a wonderful doc, if she has given you that much information about immune cells.  It would seem that she is taking a lot of time to explain things, and that is such an incredible bonus!  Not all docs take that kind of time.  I am grateful that I now have a doc who treats me as if we are partners in my care.  I wanted to say, also, welcome to posting on the site.  I am sure you will learn a lot from others who offer support, education and good spirit....even some laughs!  Oh, and thank goodness my migraines seem to have calmed down, although my primary care doc gave me a script for 800 mg. ibuprofen to take if I have to.  I can't take it often because I've had diverticulitis & gastritis, and have to be careful with my stomach.  Anyway.....!  Welcome to the club and hopefully your recent diagnosis and treatment will help the quality of your life.   Best regards, Heidi