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My doctor wants me to discontinue Plaquenil

I am a 66 year old female and 6 years ago I went to a Rheumatologist for the first time. My symptom began as pain in my hands which I thought was due to me falling. Went to a hand surgeon and he found no physical issue, He did a bloodtest and advised I go to a rheumatologist because of an elevated Smith ANA.

The rheumatologist could not pin my diagnosis as I only had a few of the typical characteristics of lupus, but he said if pressed he would conclude I had Lupus or mixed connective tissue disorder. He started with treating the pain symptom in my hands. He gave me Plaquenil (200 mg) daily and then after several months with continued pain in my hands I started Methotrexate at a moderate dose which over time helped reduce my symptoms.

After awhile I was advised to try to reduce my Methotrexate dose to a lower amount and see how that felt. I did do well with a lower dose (5 pills weekly)

A year ago I moved and started with a new Rheumatologist. She felt that I was in clinical remission and advised me to lower my Metho dose further. After several months with only minor pain symptoms she told me to discontinue Metho and see how I felt. Now, 6 months later, with only minor hand discomfort and good blood work she recommended that I discontinue Plaquenil. I was uncomfortable with that and she agreed that she would prescribe me Plaquenil for every other day and then do a 3 month followup.
I have always been under the impression that Plaquenil has some protective value and can reduce the risk of organ damage and that I would be taking it for a long time. I have seen Plaquenil be described as a bit of an "insurance policy". (I do have my retinas checked annually.)

My Rheumatologists rationalization was how will I know if I really need Plaquenil if I don't try to wean off of it.

My concerns and questions about discontinuing Plaquenil are:
1. Possibility that my disease could start to flare up again
2. Could stopping Plaquenil abruptly increase the risk of a flare
3. Organ damage that may go undetected for awhile
4. Should I get a second opinion on discontinuing Plaquenil?
5. Any recommendations for a Rheumatologist around Dallas?

Any comments or input would be so greatly appreciated.

  1. Hi, ! I don't blame you one bit for having some reservations about going off Plaquenil. Please know I can't provide medical advice, for your safety, but I am under the same impression as you -- that some medications (including Plaquenil) are used for preventative purposes, among other things. There have been some studies showing that reducing or stopping Plaquenil can increase one's chance of experiencing a flare. But, just to make things even more confusing, one small study (only 26 participants) of post menopausal women with Lupus showed no increase in the possibility of flares among the women who reduced or stopped taking Plaquenil. Maybe your doctor has seen this study and that is one reason she is going this route?

    I always tell people that no one knows your body as well as you and no one has to live within your body but you, so you get to have the final say in this. If you feel comfortable staying on the meds you are currently on, that's your right. And since you are proactive about monitoring your eye health and other potential serious side effects of the medications, you are well informed about the risks and how your body is responding to treatment.

    I am a bit of a 'doubting Thomas', so I am always game for getting a second opinion, but that's just me.

    And, while I don't have any personal recommendations for rheumatologists in the Dallas area, I do recommend this search engine as a good place to start --

    I hope this information helps!

    Best, Erin, Team Member.

    1. I’m sorry you are dealing with this. The frustration that can come from dealing with treatment options is hard. Is there a way you can make your concerns known to your doctor?

      I have had to question my doctors on certain treatment options and request what I felt worked for my body. You know your body best. A second opinion from a different rheumatologist won’t hurt. It may bring some clarity and new options for treatment.

      Trust your instincts. If it doesn’t feel right find the doctor that will listen and work with you to keep your current treatments or work on finding one that’s better. ~Racquel~ team member

      1. Thank you so much for Erin's and your reply. It is frustrating in terms of knowing what is the best treatment option. I know there are pros and cons of both staying on HCQ or trying to discontinue and hope I don't flare. To further complicate the matter my current dr says the only way to truly know if you need this medication is to try tapering or discontinuing - I'm not sure I completely agree with that. At my initial diagnosis almost 5 years ago I did not have many of the true characteristics of lupus - I had painful joints in my hands and a rash and an elevated Smith ANA but my original rheumatologist said if he had to call it something he would say Lupus but he admitted in many cases it is a guessing game/educated guess and see how you respond to treatment. I did respond but it took HCQ along with methotrexate to quiet it all down. Stopping metho was the first step which I took in January and feel good. I feel mostly good now so this is why the current doctor wants to try this now. My risk tolerance is not very high - I don't want to go back to how I felt originally. I am thinking a second opinion is the way to go but how do you do that without my current doctor feeling like I don't trust her. I will have to figure that out. I know it is about me and not her. Till then I appreciate the input more than I can say from both you and Erin. Now the next challenge will be to find another rheumatologist in the Dallas / NE Dallas area. Will talk to my PCP and see how best to proceed. For now I stay on Plaquenil daily and I will talk to my rheumatologist soon about my concerns. Thanks again. HMS

      2. I completely understand. It is a hard and delicate topic to bring up with your doctor. I have explained exactly how I feel as clear and concise as I could. I’ve even told my doctor that I was going to get another opinion and if they could give me a recommendation. 🥹 they listened when I said that and it worked to my advantage. You can also look at your insurance to get an idea as to who they cover in your area as well. Good luck I hope it works out for you just Be as honest as you can with the doctor so they can understand your concerns. ~Racquel~ team member

    2. Again many thanks - I will do some dr "research" and then plan to talk to my PCP and rheumatologist in the next few days. Your input has been invaluable.

      1. , I wish you the best of luck in finding a good doctor that meets your needs and listens to you! I know it may be a challenge, but I feel hopeful for you.

        Best, Erin, Team Member.

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