Can methotrexate and/or hydroxychloroquine make RA worse?

Posted by sheilaray @sheilaray, Mar 28, 2022

I was diagnosed with rheumatoid arthritis about 8 years ago, but am RF negative. I started on hydroxychloroquine and eventually methotrexate in addition. I felt these were helping me. In October 2021, I was diagnosed with breast cancer and had to stop both of these medications before my surgery for infectiion risk reasons. I dreaded the pain I'd feel by doing this, but I didn't have any pain. I was surprised to have no joint stiffness, swelling, or pain at all. About 6 weeks after surgery I was cleared to begin my RA medications again. Within a week, the joint pain and stiffness started again. Now I wonder if the medications are causing the pain, but I can't seem to find anything to confirm that. I'm also starting to wonder if I'm crazy and never had RA? I'm struggling to communicate with my rheumatologist adequately due to some language barriers and very strict office rules that seem to make his staff "short." I'm considering a new rheumatologist, but will have to travel quite far to get to one since the one I see is the only one near me. I just wonder if anyone else had pain that has gotten worse with these RA medications. Thank you!

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I have been told to take methotrexate for RA I always test positive for TB as mother and siblings died from it. Is it safe for me to take this?

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@suzannesparks

I have been told to take methotrexate for RA I always test positive for TB as mother and siblings died from it. Is it safe for me to take this?

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I was interested in your question because my daughter has been treated for workplace acquired TB in the past, and currently uses methotrexate for RA. In addition, she uses a biologic for chronic lung issues. She has a TB gold test twice a year, more often than is required by her employer.

Here is what I found: https://www.rheumatologynetwork.com/view/new-ra-guidelines-emphasize-methotrexate-use

Have you discussed this question with your doctors? It seems like unless you have active TB, it could be safe as long as you are closely monitored.
Sue

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Hello @sheilaray . You have a lot going on and, of course, you’re wondering about the medications. I don’t believe that methotrexate and hydroxychloroquine will cause the pain. They are for treatment. There would have been dozens of complaints to the FDA if they made the disease worse. Based on what my neighbor has told me that all of her symptoms went away when she was pregnant, but came back after birth. This may just be the bodies’ way of dealing with one Major issue at a time. And you could be having a flare as your body returns to it’s prior self
Have you checked with a university hospital or major medical center near you? Ask if they have a rheumatoid specialist on hand. I had to do this when no one locally knew what was wrong with me. My husband had to drive me from the hospital to UCHealth, about 1 hour away, during rush hour. It was so worth it!
Can you call around and let me know what you learn?

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Hi, what wonderful news that your cancer was successfully treated. Now that you are back on your RA meds and are having pain again needs
to be investigated by a doctor. I also do not believe the meds are causing your pain.
You said that it seems your doctor and his staff might be overworked and given time restraints for office visits. Communication is key to treatment.
The previous comment is spot on about seeking another RA specialist and I agree that extra traveling to seek the care is worth it.
Once you are under the care of a doctor you have confidence in, and are getting treatment, you might be able to do video calls for concerns and avoid long travel time.
I wish you the best my friend.
Jill Mosher

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Hello RA friends,
I have been taking Humira pen every two weeks and methotrexate eight tablets weekly for my RA, RF borderline. It was out of control. Swelling in every joint, knuckles, knees, tendinitis, periferal neuropathy, it was so painful to type! Attacks of Raynaud’s, Sjogren’s. Vasculitis.
My rheumatologist and neurologist were at odds with my treatment. Finally about a month ago my PCP consulted the rheumatologist in adding Prednisone 5mg daily to my meds regime. I am even allowed to take 10 mg if needed. Docs were reluctant to give me steroids but decided the benefits outweighed the risks in my case.
After one month I feel like something like a miracle has happened. I almost feel in remission. I hope this story is useful for many RA patients dealing with unsuccessful treatments. It takes a combination of drugs to do the trick. And yes, be prepared for flares. It’s part of the deal. Good luck to all from my heart
Anny Rapoport

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I also suffer from intractable trigeminal neuralgia for which I have a dilaudid implanted pain pump that goes almost directly into my brain so it does not help any other pains and I have aracnoiditis and IBSC with pelvic floor issues. I put it all out in case someone is having the same
Anny

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@kenyalama

Hello RA friends,
I have been taking Humira pen every two weeks and methotrexate eight tablets weekly for my RA, RF borderline. It was out of control. Swelling in every joint, knuckles, knees, tendinitis, periferal neuropathy, it was so painful to type! Attacks of Raynaud’s, Sjogren’s. Vasculitis.
My rheumatologist and neurologist were at odds with my treatment. Finally about a month ago my PCP consulted the rheumatologist in adding Prednisone 5mg daily to my meds regime. I am even allowed to take 10 mg if needed. Docs were reluctant to give me steroids but decided the benefits outweighed the risks in my case.
After one month I feel like something like a miracle has happened. I almost feel in remission. I hope this story is useful for many RA patients dealing with unsuccessful treatments. It takes a combination of drugs to do the trick. And yes, be prepared for flares. It’s part of the deal. Good luck to all from my heart
Anny Rapoport

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@kenyalama this is so wonderful to hear!!!! Your doctors are really working together, aren’t they. I am so glad you saw this discussion and decided to get involved. Thank you
Have you noticed any problems since you added in the prednisone?

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@becsbuddy

@kenyalama this is so wonderful to hear!!!! Your doctors are really working together, aren’t they. I am so glad you saw this discussion and decided to get involved. Thank you
Have you noticed any problems since you added in the prednisone?

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I have not noticed any problems. The only change is feeling better. I am aware of the possible swelling, osteoporosis, adrenal glands problems possible side effects as well as infections. Unlikely at my dose.
And thank you for your support!

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@jilliemo12345

Hi, what wonderful news that your cancer was successfully treated. Now that you are back on your RA meds and are having pain again needs
to be investigated by a doctor. I also do not believe the meds are causing your pain.
You said that it seems your doctor and his staff might be overworked and given time restraints for office visits. Communication is key to treatment.
The previous comment is spot on about seeking another RA specialist and I agree that extra traveling to seek the care is worth it.
Once you are under the care of a doctor you have confidence in, and are getting treatment, you might be able to do video calls for concerns and avoid long travel time.
I wish you the best my friend.
Jill Mosher

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Hi, Jill and Becky! Baylor University has several rheumatologists in a town 1 hour away. I guess it might be time to explore changing doctors. I moved in 2020 and had to change doctors then, so I'm not relishing doing it again. But, I just don't feel like there is adequate communication with my current doctor. Boy, do I miss my old doctor! Thank you both!

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@sheilaray

Hi, Jill and Becky! Baylor University has several rheumatologists in a town 1 hour away. I guess it might be time to explore changing doctors. I moved in 2020 and had to change doctors then, so I'm not relishing doing it again. But, I just don't feel like there is adequate communication with my current doctor. Boy, do I miss my old doctor! Thank you both!

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Best wishes for your finding your new doctor. You must feel trust and be able to communicate well it might take a bit of investigation but having confidence is essential.
Let us know how you are doing, we are all in this together.
Best to you, Jill

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