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Ask Me Anything Live: With Amanda Osowski and Daniel Malito

*Updated at 6:00 pm est on 5.25.22*

Thank you for participating in our Ask Me Anything! This thread will be locked, but we will select the winner of the OXO Good Grips $100 gift card giveaway soon.

We hope that the answers provided by Amanda and Daniel have provided more insight into living with RA.

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*Updated at 4:50 est on 5.25.22*

Hi RA community! For the next hour, RA patient leaders Amanda and Daniel will try to answer as many questions as possible.

As a friendly reminder, Amanda and Daniel *cannot* post medical advice.

To see new replies, please refresh this thread consistently.

Also, if you post a question - you’re automatically entered in our OXO Good Grips $100 gift card giveaway! We will end at 6pm est!
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In this forum thread, two of our RA advocates, Amanda Osowski and Daniel Malito, will answer questions from the RA community - live - on Wednesday, May 25, 2022, at 5 pm est!

What questions about living and managing RA do you have for Amanda and Daniel?

Submit your questions for Amanda and Daniel in advance! Anyone who submits a question anytime between Monday, May 2nd, 2022 at 9 am est and Wednesday, May 25, 2022 at 6 pm est is automatically entered in our OXO Good Grips $100 Giftcard Giveaway.

Amanda and Daniel will respond to your question during the AMA on Wednesday, May 25, 2022, starting at 5 pm est.

  1. I have tried several biologics, pills, infusions and I just am not getting better. I am over 2 years into this and it has changed every aspect of my life. At what point will I ever feel good again?

    1. I am 7 years in I have failed 10 biological meds now I am on an infusion for 2 years off and on we had to miss several doses due to serious hospitalizations from meds and infections. The last 2 years even with infusions my hands have become seriously disfigured to the point I can not do much anymore.

    2. Hi Kimmie - I'm so so sorry for all that you've been through. I wish I had the ability to tell you when or how you will feel good again, but from personal experience I can share this - when you find the right medication, at the right dose and the right frequency to manage the root cause of your symptoms (the inflammation, etc.), you will hopefully find symptom relief which will hopefully enable you to find a new normal where you're able to find joy again. I always recommend to other patients who haven't yet found that space that it's okay to get a second opinion, to talk to another doctor or practice about your disease, your treatment history, and how nothing has really worked so far. I'm so glad you're here in this community and I hope some of the threads below bring you hope too. Warmly, Amanda (RA Team Member)

  2. Why won't doctors prescribe LDN for RD pain if it works for so many people because it is not a controlled substance or harmful? It would be worth a try to relieve the constant, debilitating pain many of us live with.

    1. LDN is a 50/50 gamble, at least that’s what I read in all the literature I could find before I started taking it. I’m on the second dosage (2 mg.) already and have not noticed any difference at all. No side effects, either.

    2. Hi there. I recently wrote an article on LDN for RA - https://rheumatoidarthritis.net/living/low-dose-naltrexone. While there is still limited research and data on this, I would encourage you to ask for a second opinion from another Rheumatologist or your Primary Care Physician if you think LDN might be beneficial for you. Please remember that we are not doctors or able to give medical advice here, but we can encourage you to advocate for yourself and ask a lot of questions, especially if you think changing or adding to your current treatment can be helpful to your disease activity and symptoms. Thinking of you! Warmly, Amanda (RA Team Member)

  3. I'm just starting my first biologic. Three injections in as of today. So far so good but how long does it take to know if it is helping???

    1. Thanks for reaching out and sharing. Generally speaking it can take a few months for a new treatment plan to reach full it's effect. In addition to speaking with your doctor about your questions and any concerns, this article may be helpful: https://rheumatoidarthritis.net/living/biologic-working. Wishing you relief very soon. Best, Kelly, Rheumatoidarthritis.net Team member

    2. Hi there! I am so hopeful for your new biologic. I know when you first posted this comment a few weeks ago you said so far so good. I'm hoping it's still going well! I have been on the biologic that helped me to find remission for five years now, and I'd say that while I had some immediate relief, it took a few months to really feel physically better and maintain that improvement. Be sure to be in continual communication with your doctor, sharing what symptoms have improved and which have not. An open conversation will help your doctor to know if the dose or timing of your biologic might need to be altered, or if/when it's time to try something else. Thinking of you! Warmly, Amanda (RA Team Member)

  4. Are there any over-the-counter supplements that you have found useful?

    1. Hi there! I haven't found any oral supplements to be helpful for my RA symptoms, but I have used topical gels such as Arincare, BioFreeze and TigerBalm which I have found to be beneficial for pains in my larger joints such as knees, hips and shoulders. This article I wrote shares some additional information https://rheumatoidarthritis.net/living/pain-management-tools. One other over the counter item I've found to be so helpful is a TENS unit. I wrote about my experience using it here: https://rheumatoidarthritis.net/living/tens-unit. So hopeful to you that you can find lasting, sustainable relief. Warmly, Amanda (RA Team Member)

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