Hello everyone! I'm new to all of this, diagnosed with Lupus Aug. 31, 2001 & just joined this site today. In the beginning my rheumatologist put me on Plaquenil & when I filled it at the pharmacy I was given the generic version, which was fine in my opinion. Within days I felt better even though I was told it could take weeks to take effect. I had more energy & for the 1st time in months my joints were feeling better. However, within a week I had broken out in a rash that my dr said was a reaction to the plaquenil & switched me to Azathioprine (generic for Imuran). I swear I feel worse now than I ever did! I've been doing some research & have found a few mentions of side effects being less with the name brand Plaquenil. Has anyone had this issue or tried going on name brand Plaquenil after reacting to the generic version? I want so much to be off of my current medication but the nurse told me my next option was high dose steroids. Thank you so much for any input you can share with me!
I have been on Plaquenil for over 9 years now and it's always been the generic hydroxychloriquine. Have you brought this question to your doctor yet? I would say, especially if you're opposed and not wanting to try steroids, that you want to try name brand Plaquenil before continuing on this medication makes you feel horrible or taking steroids. When you say you're new to this, do you mean the site? Or Lupus? Because you put 2001 but I'm assuming you meant 2011 and the only reason I ask is because if it was 2001, what did you use for medications before? The unfortunate fact with Lupus is that everyone is so different and the meds react to everyone so different as well.
And of course I'm not a doctor, but was it an option to just stay on the generic plaquenil and see if the rash would work itself out (I of course don't know the severity of the rash) because it may have just been your body reacting to something foreign and maybe would have adjusted to it after a little while.
I'm sorry for my typo. I was diagnosed last month. I go back to my dr in 2 weeks & I'm not very impressed with him. He seems like a very nice guy but the practice he's with is not very organized. I've called 3 times since my diagnosis & each time it's taken them 2 days to return my call (even with the reaction with the plaquenil). I want to go into my appointment with as much info as I can because so far I've mostly been treated like" this is what you have....this is what you need to take.....I don't have time for questions". I intend to ask him about trying name brand Plaquenil or find out if there are other antimalarials I can try. If this visit doesn't go better I'm doctor shopping.
He didn't give me the option of staying on the generic version. I was pretty much covered from my hips to my shoulders, but it was gone in 10 days. The plaquenil is the only thing that was new to me. I also haven't really had any problems with rashes from Lupus, mine effects my joints. I've had a few minor rashes but nothing this intense. It was like a blistering sunburn.
Yes! Definitely doctor shop if you don't get a better vibe the next time around - but ya know what? There's got to be something said for initial/gut instincts..... :) The relationship that you're going to have with your rheumatologist is going to probably be one of the most important in your life - from the front desk receptionist all the way to the doctor - so if you're not feelin' it....move on! LOL :) That's exactly what I had to do - at first I was like "I want a woman doctor" so I sought one out.....and she was just awful - left me feeling like I didn't know what the heck was going on, just like you said "this is what you have and this is what I want you to take". And even sort of made me feel stupid for the questions I asked. But for Lupus it goes way beyond "this is what you have and this is your medicine".
My Rheumy is AMAZING! I let the whole "need to have a woman doctor" go and just did research. He actually talks to me about the whole package and not just the disease, which you don't see a lot of these days in healthcare...and what I mean by whole package is nutrition, exercise, state of mind, positivity, people I choose to have in my life and medications. Almost exactly in that order. He turned me onto meditation and talks about the importance of my nutrition and how it will effect me. He's all about Zen and actually recently said to me "Lupus patients need to be Zen more than anyone else!" Too true! So, those kinds of Rheumatologists ARE out there you just have to go looking. It's places like this where you might even be able to find recommendations. Or better yet, before you even make an appointment with one Google their name. See if there's anything out there you can find out about them BEFORE you waste your time ;) Not their time...YOUR time!
I'm so sorry that within the same month of you finding out you have Lupus, that you're having struggles with medications. Just try your best to keep your PMA - positive mental attitude (one of my daily affirmations) keep telling yourself that you are on the right track and you will find the right medication for you.
And as far as taking the name brand Plaquenil - do you have insurance that would cover that? Because I believe that if you went to the Pharmacy and told them you wanted name brand they'd give it to you 1) if your insurance pays for it or 2) you're willing to pay for it :)
Thank you so much for talking to me! You're so right about the mental attitude. I really am a positive person, i think right now I'm just so focused on getting info, lol! My husband had non-hodgkins lymphoma 2 & 1/2 years ago & I saw first hand how a positive attitude heals the body. He's doing great now!! I'm so glad I joined here, I've spent alot of time today looking around & just figuring the site out. I can't wait to get to know more people. I guess I need to add more info to my page.....I read yours. You've been through quite a lot & even with that you come across as so bubbly & full of life. Thank you for your replies! :))
You're welcome! That's why we're all here :) Hodgkins Lymphoma - I guess you do know how to work on keeping PMA ;) I hope everything is ok now with your husband.
I'm new to this site as well...I don't know if you read my blog post but for some reason I never thought seeking support was important - I'm kind of a stubborn fool sometimes ;) So I'm happy for you that you were able to find this site so early into your diagnosis.