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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@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'm so happy this worked for you! I know what a miracle prednisone can be. I will say that after 3 years of prednisone I developed cataracts, nearly overnight, and have had 4 corrective surgeries so far. I also have a leak behind my retna that causes fluid to build up and make my vision appear as if I am looking through a fun house mirror. I finally had to give up steroids and that choice landed me in bed for the better part of 10 weeks. Eight months later and I am still not fully okay and my vision isn't great. I miss prednisone every time I have to move my body, but I had to choose between sight and lowered mobility. I hope this is helpful. My suggestion is, don't stay on it too long and have your optometrist check for the beginning of cataracts, so many don't know to look.

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My spelling is awful! My apologies! I don't know how to edit this once it's posted.

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@psa44

My spelling is awful! My apologies! I don't know how to edit this once it's posted.

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Hi @psa44 I promise you, there are no grammar police or your 3rd grade spelling teacher here to smack you with a ruler. Can you tell I was brought up in a parochial school? 😂
However, you have an option to edit your post within 30 minutes of hitting that reply button. When you look at the posting, under the final sentence, you’ll see a heart on the left side and 3 dots … on the right side. Click those 3 dots and a menu will appear. Look to the bottom of that menu and it will say Edit. Click there and you’ll be in edit mode to correct what you wish, then hit reply again. Does that help?

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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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@sheilaray I’m glad you’re going to try a new doctor, but might i suggest you do a little research first. You can look them up on Baylor University’s website or the medical association in the town where they are located. You want to see 1. If they have a good reputation, 2. Have RA as a sub specialty, 3. Are Board Certified in rheumatology.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
My sister had to do this. When she met the doctor, she said how much she appreciated his seeing her and trying to help her. She felt he was so helpful.
When you get your appointment, be sure to let us know!

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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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Methatrexate really did the same for me. I changed to injectable and it made the days easier. However, changing my diet to non processed, avoiding sugar, potatoes, tomato and moderating dairy and whole wheat as well as adding a daily walk to my lifestyle worked well with it. PT referral for chronic joint ills is great. At retirement I was able to go off of MTX. I have been on Plaquenil for years; going to half dose this year to see if that will do. Apparently, I am elderly now. Of course, I have to pace myself and do the ice/heat, lidocaine patches, epsom salt baths etc, but resting without daily movement is toxic.

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@psa44

My spelling is awful! My apologies! I don't know how to edit this once it's posted.

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Not to worry or apologize, once it’s sent it is set in stone, everyone sends mistakes this is understood and acceptable.
Be easy on yourself, compassion begins at home.❤️

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@psa44

I'm so happy this worked for you! I know what a miracle prednisone can be. I will say that after 3 years of prednisone I developed cataracts, nearly overnight, and have had 4 corrective surgeries so far. I also have a leak behind my retna that causes fluid to build up and make my vision appear as if I am looking through a fun house mirror. I finally had to give up steroids and that choice landed me in bed for the better part of 10 weeks. Eight months later and I am still not fully okay and my vision isn't great. I miss prednisone every time I have to move my body, but I had to choose between sight and lowered mobility. I hope this is helpful. My suggestion is, don't stay on it too long and have your optometrist check for the beginning of cataracts, so many don't know to look.

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Hi Good Day ,
In reading your issue regarding prednisone I also had been taking it for over a year and half. I have had thinning of my skin, weight gain while taking with moon face and the beginning of a hump on my back. I was treated for RA but it took awhile to diagnose. My Dr is a very good communicated as I found a new one closer to where I live. I trust her. She did change my methotrexate RX to another one and on Simponi infusions. It helps a bit but just restarted the biologics 2 month ago and takes awhile to build up . I am a painter , this disease has made it very difficult to paint as it has affected my hands, wrists and elbow which I wrap daily and have had OT which has helped me with splints and exercise but try not to use my hands to much except painting and cooking.
Wish you better health and blessings.
Glynnis

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@jilliemo12345

Not to worry or apologize, once it’s sent it is set in stone, everyone sends mistakes this is understood and acceptable.
Be easy on yourself, compassion begins at home.❤️

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Good morning @jilliemo12345 Your message for @psa44 is so warm and encouraging. I think it’s a wonderful reminder to be kind to ourselves; compassion does begin at home. Your message is also an example of what makes Connect such a supportive and welcoming community. ☺️

But for the times you’ve posted something in Connect that really gnaws at you and if, for any reason, you want it changed or deleted, you have options! 🙃

You can edit your post within 30 minutes of hitting that reply button. When you look at the posting, under the final sentence, you’ll see a heart on the left side and 3 dots … on the right side. Click those 3 dots and a menu will appear. Look to the bottom of that menu and it will say Edit. Click there and you’ll be in edit mode to correct what you wish, then hit reply again.

If you discover your error after 30 minutes, use that same direction for the 3 dots … and in that menu you’ll see Report Comment. Tell the moderator what you wanted changed and they’ll do that for you. Does this help ease your mind?

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@loribmt

Good morning @jilliemo12345 Your message for @psa44 is so warm and encouraging. I think it’s a wonderful reminder to be kind to ourselves; compassion does begin at home. Your message is also an example of what makes Connect such a supportive and welcoming community. ☺️

But for the times you’ve posted something in Connect that really gnaws at you and if, for any reason, you want it changed or deleted, you have options! 🙃

You can edit your post within 30 minutes of hitting that reply button. When you look at the posting, under the final sentence, you’ll see a heart on the left side and 3 dots … on the right side. Click those 3 dots and a menu will appear. Look to the bottom of that menu and it will say Edit. Click there and you’ll be in edit mode to correct what you wish, then hit reply again.

If you discover your error after 30 minutes, use that same direction for the 3 dots … and in that menu you’ll see Report Comment. Tell the moderator what you wanted changed and they’ll do that for you. Does this help ease your mind?

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Yes. Thank you. This is super helpful.

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@loribmt

Hi @psa44 I promise you, there are no grammar police or your 3rd grade spelling teacher here to smack you with a ruler. Can you tell I was brought up in a parochial school? 😂
However, you have an option to edit your post within 30 minutes of hitting that reply button. When you look at the posting, under the final sentence, you’ll see a heart on the left side and 3 dots … on the right side. Click those 3 dots and a menu will appear. Look to the bottom of that menu and it will say Edit. Click there and you’ll be in edit mode to correct what you wish, then hit reply again. Does that help?

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Thank you

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