Riding the Rheumatoid Arthritis Rollercoaster: Methotrexate, Medication Changes and More with Ali

Have you ever felt overwhelmed with changing medications? On Episode 76 of the Arthritis Life Podcast, Ali DiGiacomo describes the emotional roller coaster she experienced while managing a flare up of rheumatoid arthritis and switching up her medication regimen.
Ali & Cheryl also discuss what it’s like to have costochondritis and how they cope with unresolved health issues while still trying to live a full, joyful life.
This episode also includes reflections about how to cope with social media jealousy within the chronic illness community, how to set boundaries with friends and loved ones during Covid times, and more.
For full episode details plus a transcript, go to the show page here: arthritis.thee...
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[@wallhagens2001]

Thanks so much for sharing your experiences. I was diagnosed with RA four years ago and it's so hard dealing with the instability of the situation. Some periods of time I feel almost normal, then I'll have months where I'm laid up on the sofa. It's a real crazy-making illness and so hard for people to understand. I am having to learn to be patient with myself and forgiving of myself when I'm going through rough patches.

[@ArthritisLife]

I'm so glad that our stories resonated and were helpful! I completely agree that the instability / uncertainty is one of the toughest things to deal with. For me, it helped to work as hard as I could on accepting the ups and downs, rather than searching for a way to control things perfectly. Being patient and forgiving, as you said, goes a long way. Sending lots of support your way! - Cheryl

[@0nly0NE.]

I started with lifestyle changes ( no insurance) and hit near remission but then couldn’t keep that up because I needed to take classes to get to my career goals. So then I tried Enbrel (it worked well but with weird side effects) and built up antibodies after missing a dose by a day or two after less than a year of taking it. Then I switched to Humira and that worked with lifestyle changes for a while and then I wasn’t sure if it was doing anything. After less than 2yrs of that I moved states and had no health coverage again and did just lifestyle changes for 1.5yrs, after which it was flaring up for long enough I finally figured how to get health care. Now I’m on methotrexate (about 2.5 months) but I only take 6 and I think I need to up the dose now, but I can’t for a few months because I’m out of state. So back to trying to be more careful with lifestyle. If only I could fix my sleep issues I could maybe be doing better with lifestyle changes. Oh well. Thanks for sharing. It is good to hear other people’s experiences, especially from others that have had to try multiple things to manage their RA.

[@Hazel-CookieM]

I have watched this video along with some of your other podcasts. I have talked with my doctor about being scared of taking methotrexate. I don’t feel like he has listened to me. He told me that not very many people have side effects from this medicine. I said what about nausea and hair loss? He said is very uncommon. He did give me folic acid to take as well. I have been on a prednisone taper regimen. Everything I have seen on social media says that I will become sick from taking it and this does not make me feel better and also makes me think that my doctor is lying to me. I have called and talked with the nurse about maybe splitting up the dosage and she said the doctor wants me to take all 4 pills at once. I just don’t know what to do at this point beside put my big girl shorts on and play Russian roulette and I hope that I don’t die😢

[@ArthritisLife]

Hi there! So I'm sorry if it was unclear from this video, but I have taken methotrexate for 20 years and it has absolutely worked for my "severe" rheumatoid arthritis (diagnosed in 2003) without any horrible side effects. Methotrexate and the other medications for rheumatoid arthritis are effective that it's actually considered unethical for scientific / clinical trials to be done with a control group that isn't medicated, because the medications work and are usually safe and well tolerated. Please see this blog post from my website for citations: arthritis.theenthusiasticlife.com/2023/04/07/how-effective-are-rheumatoid-arthritis-medications/ - Methotrexate is considered “backbone” of RA treatment because of its known efficacy and safety as initial monotherapy or combination treatment.” - “About half of all patients treated with methotrexate have little or no radiographic progression, although 30% will require additional DMARDs (like biologics).” (Radiographic progression means visible joint damage on X-ray or other imaging techniques) - “In most patients, RA is a chronic, progressive disease characterized by episodes of disease flares or long-term chronic inflammation. Only a few patients achieve long-term remission without the need for long-term medications.” I leave this to hopefully ease your mind!

[@Hazel-CookieM]

@@ArthritisLife thank you! It’s always helps to hear positive things about this medication. I will talk with my doctor soon about my concerns as well and see what we can come up with as far as a plan of when to start taking it. I guess my main concern would be: when do I think I can start it and also have time to be sick from it, if it does happen and how will I be able to still work full time, take my child to and from school and to her appts, and also watch my little 2 year old niece in the evenings for my sister so that she can work. I already took the semester off school so that I can get treatment and start to feel better and be more productive. I guess life never slows down for the problems we have. Thank you for making these videos and helping others. It really means a lot and please continue advocating. ❤️