What’s it Like to be on Methotrexate for Rheumatoid Arthritis or Psoriatic Arthritis? (Panel #3)

In this episode, Cheryl checks in with a panel of patients who’ve taken methotrexate for rheumatoid arthritis or psoriatic arthritis. For full episode details including a transcript, please go to the Arthritis Life website at: arthritis.thee...
This is a follow up to episode 45: “What’s it like to be on Methotrexate for Rheumatoid Arthritis or Psoriatic Arthritis?” Paulina, Jenny, Ali, and Ananthi share what’s changed and what has stayed the same with their medications, including whether they’re still on methotrexate. They also reflect on how they’ve navigated the ups and downs of chronic illness life and share how grief and joy can co-exist. They also highlight the importance of finding a supportive community with shared experiences. They also discuss their choices around how much to share on social media about their experiences.
Paulina, Jenny, Ali, and Ananthi each share wisdom that has guided them along this nonlinear journey; encouraging self-care, advocating, celebrating small victories, and approaching life one day at a time. They conclude with a discussion about how to balance acceptance and adapting with a “fixing” mindset.
*MEDICAL DISCLAIMER*
All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
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[@lindamadrid2490]

I was recently diagnosed with RA and OA. It literally struck me months after my 70th birthday. As if coping withCFS/ME since I was 38 wasn’t enough! I have no one that wants to listen to me anymore and I really don’t blame them. Thank-you ladies for sharing your stories. You have been inspirational to me. I’m grateful this disease waited until now to strike. I’m going with “they’ll find a cure in the near future”. God bless you all.

[@ArthritisLife]

Sending you lots of love and support, handling OA, RA *and* ME/CFS is a lot to cope with. Gently crossing fingers for a cure as well!

[@Rusty_Teddy]

I wanted to express my heartfelt gratitude for this insightful panel discussion. As someone personally navigating this chronic illness for almost two years, hearing the participants share their experiences deeply resonated with me. The openness with which everyone discussed the challenges, from the constant flares & fatigue, ‘mental fog’ to the ‘methotrexate hangovers’, struck a chord in my own journey. It was incredibly validating to hear these shared experiences, knowing I'm not alone in this battle. 🥹🥹 Your video was not just informative but also profoundly comforting. It's a rarity to find such candid conversations that truly capture the realities of living with Rheumatoid Arthritis. Thank you for providing a platform where our community's voices can be heard and understood.🧡 With sincere appreciation, Prateek

[@ArthritisLife]

Thank you so much Prateek, I am so touched by your thoughtful response to this episode! I will share your kind words with the other panelists as well. Please let me know if you have any topic requests for future podcasts and/or videos!

[@elysenicole417]

I found this video whilst looking for more information on RA, I was just diagnosed this week and kinda didn't know how to process it. I hadn't cried over it, just felt melancholy and letting days go by. I started crying by the end of the video when Jenny was talking about grief. I didn't even realize that's what I was feeling, grief for my past self that this was my new normal. I'm so glad I watched the whole video and also thank you all for sharing your stories. Made me feel better about my future. ❤

[@ArthritisLife]

Thank you so much for sharing, I'm so glad that this discussion helped you process your grief. I'm so glad that the video made you feel better about your future!!

[@stephi_1111]

Thank you this really helped.

[@ArthritisLife]

I'm so glad to hear that, thank you for taking the time to let me know

[@KatarzynaKowalczuk-t9o]

Finally, I found content created by womem for women. Thank heavens I’ve found you. Thank you to all of you for sharing and making me feel I am not alone. May I just say, the way your are all playing it down like it’s bit of a nuisance. When you watch videos made by the men, oh the drama! You are all tough as nails. We all are!

[@Aelling-mj4jx]

Thank you all for your insights! It is so helpful to hear the different experiences you are all having, with pain, with medication, and with finding coping tools for all of it. I am also just realizing that this is going to be a grief process...and not "just" a mission to control my symptoms. Wild. Thanks again for your content!

[@ArthritisLife]

I am SO glad that our conversation helped you, it's such a tough balance to strike between coping and trying to control symptoms but I think it's super helpful to focus on the coping part too!

[@user-zn3rm3pl4b]

It helps me to hear your stories. Thanks to all of you.

[@ArthritisLife]

Thank you so much for letting us know it was helpful! I feel the same way, hearing others' stories helps me feel less alone

[@jaywithwhiskey]

Thank you so much for making this ❤ Ive been newly diagnosed and have found this channel so vital to my processing it all. And the end of this discussion where you all give advice really made me tear up in a good way. I feel seen!! Loads of love and healing energy to you all ❤

[@ArthritisLife]

Aww now you're making me tear up, I'm so so glad that this video and the rest of my channel has helped you so much!

[@ttime575]

Great catch up everyone!💜

[@ArthritisLife]

So glad you enjoyed it!

[@JenniferHenry-mw1xq]

Brilliant u tube video i was scared too about taking metratrax to begin with hearing that once meds are working life should get better.

[@ArthritisLife]

Thank you so much for your kind words!!

[@Stretchinstructor]

FYI - There is actually a blood test they can give you to see if your methotrexate is therapeutic or not. I found this out after being on methotrexate for five years and I was continually having flares. I don’t think most people know about this test…?

[@ArthritisLife]

Thank you for letting me know, can you let me know the name of the test you're referring to?

[@heidiwilliams4394]

@@ArthritisLife It is a blood test specifically for methotrexate levels. It really doesn’t have a name.

[@karishafer9670]

Thanks Ladies. I was finally diagnosed in January at 53 this year after 20 years of pain. Prescribed hydroxychloroquine and after almost 1 month i ended up in ER with a full body rash😢. I was upset because it was helping. Dr gave me steroids and supposed to start Methotrexate after round of steroids. I still havent started it cause it scares the .... out of me. But every time i workout or do a good walk bikeride etc i am in pain. I was up all night with feet n hand pain last night think i am going to start this tonight. I love being in sun and kayaking going to beach etc the sun is my life. I read not to be in sun with tjis any experience with this in low doses? And i just got a job after being home for 5 years so i gotta make sure this doesn't make me sick. I did get folic acid to go with the 10mg a week.

[@ArthritisLife]

Hi there, thank you for sharing. The best advice I got for when you're scared of staring a medication is: "Think of it like dating, not a marriage." It's something you can *try,* and if it doesn't work out, you don't have to continue it! I hope methotrexate or whatever medication you try next works! To answer your question about sun sensitivity, yes that's correct but I do find it possible to enjoy travel and outdoor activities while on methotrexate. I have a swimsuit that covers me head to toe and wear a sun hat. As long as the sun isn't beating on my skin I think I'm ok.

[@Hazel-CookieM]

Can you give an update on how you are doing on the methotrexate now?

[@karenhomecooking6734]

Feel better everyone.

[@ArthritisLife]

Thank you so much!

[@lifeasitis2020]

Thank you wo much! This was so informative! I believe your channel is underrated, you should have mire views and followers for all what you do! Please do not give up doimg this, not all.of us are brave enough to tell other in public our stuffs a round of applause to all of you! On a side note: You today did awesome allowing your friends talking, as I have watched other of your videos, you have that tendency to interrupt your guests when they are telling something important or informative, to tell us you are passing through the same or that you already know what they are talking about or finishing the point they were about to make, so after several minutes that you been non stopping talking the person forget to finish their point of what they were talking about, and you constantly interrupt them, so sometimes I feel like stop watching it for that... please don't take me wrong I tend to do that too, I'm just saying it as a side note for you to examine yourself while interviewing others❤ but besides that, I love your content and knowledge and you are a source of confidence of how real life is with this autoimmune condition. Keep up the good work thanksss

[@ArthritisLife]

Thank you for the feedback, I'm aware of my faults like interrupting and I'm trying to get better at them. It takes a tremendous amount of (unpaid) time to provide the volume of free education that I do so I'm I'm glad that my videos have been helpful and that you are hoping my channel gets more views. My goal is to help as many people as possible so I also hope that more people watch the videos also.

[@jaywithwhiskey]

Thanks

[@ArthritisLife]

Thank you for taking the time to listen!

[@melvargas9237]

I had taken the tablets and hated the side effects back when I was first diagnosed about 7 years ago now; I’m in pharmaceuticals now and see more and more injections so I’ve inquired with my patients that take them how they feel and they have said the side effects are not as severe as they were with the tablets. I’m in my dr office as I type this and plan on speaking with her about the injections and getting off the infusion I’m currently on because it didn’t help at all

[@ArthritisLife]

Thank you so much for sharing and I hope that you are doing well now!

[@sandrap4188]

Would like to know if these ladies have tried red light therapy for their autoimmune arthritis? Or anything other than prescription meds/therapy.... like autoimmune diet or accupuncture.... show improvement to their quality of life?

[@ArthritisLife]

Hi there, so the western medicine has by far had the strongest positive effect on my RA and has been the most helpful - that said, I do follow the " ACR guidelines for Integrated Treatments" for RA which emphasizes the importance of exercise / physical activity, stress management and a general anti inflammatory / mediterranean style diet. I hope that helps!

[@juliannaburgess9177]

Thank you VERY MUCH for your video I found my group! I want more info and sharing.Thinking back to 2006, the questions asked about do you have pain, or this,or that, flare up? It's like what?! I work hard everyday. Of course I have pain and stiffness. Plus a high tolerance to pain)just work through it. I need to repeat everything tomorrow. I don't/ can't have autoimmune disease. Sheer compromise, denial, etc. Even thou I take Plaquenil for Lupus, I refused the suggestion of Methodrexate,(you're not messing up my blood work). Now fast forward, Methodrexate is back on the table. Bc of a wrist joint that shows some erosion. I'm seriously considering it bc of the info you all have shared. Thank you very much for your time and looking forward to hearing more. Sending MERRY Christmas joy to all of you and Happy health!

[@ArthritisLife]

Thank you so much for sharing your story, I'm so glad we've helped and please know you're not alone!

[@DariceDronzek]

Thank you for producing this video it has a lot of great info, I'm at the end of my first week on mtx and I already have a fatty liver and also just had gallbladder removed. Anything I need to know what to ask Dr. I don't have RA I do have fibromyalgia but inflammation won't go down so Dr wants to try MTX I am having a lot of nausea and tiredness. Thank you

[@ArthritisLife]

I'm so sorry to hear about the nausea! Some docs will prescribe an anti nausea medication prescription. Some will also recommend doing half the dose in the morning and half at night. Taking it via injection versus oral pills can lessen the liklihood of nausea. Lastly, I would be in touch with your doctor about fatty liver and the potential impacts of methotrexate on your liver. I get my liver enzymes checked every 3 months and they've been ok for the last 20 years of me being on methotrexate but everyone's different. I hope this helps!

[@salitral614]

I have anti synthetase syndrome. I have ILD and myositis. My ILD is mild My biggest problem is with arthritis. My rhumathologist is now treating me with methotrexate and told me that it is no longer true that methotrexate is bad for the lungs and can exacerbate Intersticial lung desease. I would like to know if you had experience lung problems side effects after taking methotrexate.Thanks for your blog !

[@ArthritisLife]

Thank you for reaching out! To answer your question, I've been on methotrexate for 20 years and not had any lung issues. I hope you do well with it!- Cheryl

[@salitral614]

Thank you so much, your podcast has really brought me hope and comfort in many ways,@@ArthritisLife

[@iamlmc1640]

Hello, I'm on methotrexate. I take the pills once a week. But they make me so sick. I get a severe headache, so weak, and extremely tired for about 4 days. By that time its almost time to take the next dose again, Does this go away? Is there anything I can do to lessen the side effects?

[@ArthritisLife]

Hi there - many people find the side effects aren't as bad if you inject methotrexate versus taking it orally. I would let your doctor know how severe your side effects are and they might want to lessen your dose so your body can adjust. Some doctors also suggest dividing the dose into two (one in the morning and one in the evening) to reduce side effects. Lastly, some doctors recommend mucinex as an off label treatment for the post-methotrexate fatigue. I hope this helps!

[@iamlmc1640]

@@ArthritisLife thank you for the information!

[@khinnanoo]

I just diagnose with R/A and just start methotrexate. I am 57 and had a very b healthy life so I am little bit worry about taking it for rest of my life...any suggestion

[@ArthritisLife]

Hi there, what helps me consider taking methotrexate the rest of my life is that I know it works to slow down the progression of my disease. The disease itself is associated with a 7 year reduction in lifespan, if not controlled, so the medication helps reduce that liklihood. I feel optimistic about taking it. That's just my perspective, hope that helps!

[@khinnanoo]

@@ArthritisLife thank you so much. I have already start to take . 15 mg per week...does the dosage goes up or down???

[@njanderson4342]

Everybody, doctors included, thought my uncle was having heart attacks and he had arthritis affecting his sternum.

[@ArthritisLife]

I'm so sorry that he had that experience, that sounds so scary. I hope he's doing Ok now!

[@jonnyboi068]

Lol Cheryl Crow? Like the Cheryl Crow?

[@ArthritisLife]

I'm the "arthritis Cheryl Crow," not the famous singer Sheryl Crow!