I was diagnosed with Sjogren’s a year ago (Early Sjogren’s Panel) by the doctor I see for Ehlers-Danlos Syndrome. I started at a very low dose- 100mg per day (1/2 of a 200 mg tablet), in addition to a small dose of modafinil I was taking for fatigue, which is my worst symptom. I don’t have joint pain (knock on wood, also unusual for EDS). After a couple of months I was feeling so much better that I quit taking the modafinil, had enough energy to actually accomplish things, etc. I upped the dose to 200 mg per day.
However as time went on I very slowly became depressed and anxious. I would wake up every morning so anxious that I didn’t want to face the day. My severe headaches increased and my digestive issues (which I fight always) worsened. I began to feel emotionally very isolated from friends and family, lost all creativity and couldn’t do artwork. I began to feel that life in general was pointless and while not suicidal, often felt life wasn’t worth living. I have had this happen with other meds in the past and so eventually I realized it might be a reaction to the plaquenil. So I went off of it. Everything cleared up and I went back to normal. However, then my fatigue returned. After several months off of plaquenil, I went back on it, deciding to stick with the 100 mg per day. I have always been very sensitive to meds. Again my fatigue improved and I began to be able to do more. But again- over several months time my anxiety, depression, and sense of distance from personal relationships began to worsen. It happens so subtly that I don’t realize it. Finally I found myself with the old morning anxiety, unable to face the day, helpless feeling about the future, feeling I would be unable to go forward with plans, etc. Instead of a headache once a month, they started twice a week. It’s an issue because the only treatment I have is giving myself IM Toradol injections, which is not fun and can cause stomach bleeding. I stopped the plaquenil again and it has cleared up.
I mentioned this to my cardiologist at the Marfan Center at Stanford where I am seen for Ehlers-Danlos Syndrome and he said he had heard of people reacting to plaquenil this way. He said many people feel great on it- but some people react like I did.
Has anyone here had this reaction to plaquenil? And if so- did you try another med in its place? Thank you!
That’s a very interesting reaction to plaquenil. I was on it for four or five years personally, and did well. But it sounds like you did this correctly. Started off slow. Considered whether the change in your mental state could be related, came off the med and had an improvement.
Cirquemom, have you tried the generic Hydroxychloroquine? I ask because after 15 years working in a pharm I can tell you in no uncertain terms that people react to the inactive ingredients in meds and sometimes do better on the generic than the brand and vice versa.
You also have several options in same category since you’re having mood issues with Plaquenil (which, btw, are not unusal):
leflunomide (Arava)
methotrexate (Trexall)
sulfasalazine (Azulfidine)
minocycline (Minocin)
Since fatigue is your main issue what about going back on modafinil as a daily med? Or very low dose adderall if you just need a “boost” to get through the afternoon?
azurelle
Hello! Thank you for your response! Yes, the plaquenil is generic. I’m allergic to sulfa drugs- could that have anything to do with this? I will take the list of other meds to my doctor and see what she thinks.
I’ve gone back on the low-dose of provigil (actually again the generic, modafinil) to get me through the day. Again- I take half the normal dose- for some reason I am always sensitive to meds and often have to take a lower dose.
Thank you again- it’s reassuring to hear it isn’t just me! And also my cardiologist said that he had heard of this reaction. A bit discouraging because it did make me feel better.
In fact, one day I think when I was taking both, I had a really good day. I felt great! Not tired at all, got a lot done. I remember thinking- “This is what NORMAL people feel like!” Wish I could get that formula down to where it worked all the time.