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29 y/o female with questions!

I’m a 29-year-old female living in Alaska. I was diagnosed with RA in April of this year. I woke up one morning with swollen feet, ankles and knees so I visited my primary care doc who decided to put me on 60mg prednisone after 4 days of worsening swelling and pain. By the grace of God, he happened to call a rheumatologist who was so concerned by the fact I was put on such a high dose of prednisone and by some of the wacky questions my primary care doc was asking, I was in with that Rheumatologist within the week.

I’m now on 25mg oral methotrexate and down to 40mg of prednisone. I’m about to start Remicade in the next week or so and I’m curious about side effects people have had with it? I really just want to get back to being a fun loving and active person who doesn’t ever have to depend on a walker (I’ve had two flares since and that’s the only way to get around.) I’d also love to talk to someone around my age with RA because at this point the chances of me finding any up here are pretty low.

Thanks everyone!

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Comments

  • Vnotaro
    3 years ago

    Also, does anyone have any experience with having children? I’ve noticed since the start of the onset I’ve noticed that my period is very light. Last time it was only 1 day! Could it be due to the RA? Does anyone have any experience with this?

  • Vnotaro
    3 years ago

    Thanks for getting back to me on this. I’ve always been very regular so it’s freaking me out. Have you talked to a gyno? My doctor keeps brushing me off saying it might be because of RA and once I get it under control it will resolve. But I’m sceptical.

  • Zoyak29 author
    3 years ago

    Also, I’m sorry I’m like the bad news giver, I haven’t had my period at all since April. For some reason I’ve never asked about it but it must have something to do with RA.

  • Vnotaro
    3 years ago

    Hey, I’m also 29 and was just diagnosed with RA. I’m currently on Sulfasalazine and it’s been helping a bit but I still feel it a lot in my hands and ankles. I’m not sure about the pills you spoke of but can you tell me your experience with Mthotraxate? I was really scared to take it as my husband and I want to have kids eventually. Did you have any bad reactions? More likely to get infections and things like that?

  • Zoyak29 author
    3 years ago

    I didn’t react well to Methotrexate. Even though I’m on Prednisone I still lost over 60 pounds because I was/am either really nauseous or just don’t eat. I don’t have any relationship with food except I force myself to eat because obviously everyone needs to eat. I also got really bad ulcers all over my tongue and the folic acid didn’t help so I had to get on Leucovorin. I haven’t had any issues with infections and being on Methotrexate and now Remicade, I’m even more vulnerable but it really hasn’t been an issue at all. I’ve actually been super healthy in regards to getting colds or anything else except RA lol.

    I want to stress the fact that I have a very abnormal and bad reaction to the Methotrexate. As far as kids go, we don’t have any as I already has existing issues with fertility, but I do know that (according to my doctor) you need to be off of Methotrexate for 12 weeks before trying for kids, off it all 9 months, apparently in a lot of cases pregnancy puts RA into a remission type state and you feel really good during. But as soon as you give birth you should get back on it. This is all according to my doctor. Basically as soon as we found out I’d have to be off of it to even start fertility treatment we 100% decided having children naturally just wouldn’t be an option for me.
    This is all probably not helpful at all,literally everyone I know who has RA didn’t have bad reactions with Methotrexate at all. My doctor never gave me an option of taking shots and I’m on a VERY high dose, but if you can, do the shots. I think a lot of my bad reaction has a lot to do with the fact I have to take SO many pills. My liver is screaming stoooppppp!!!

  • Larry Sawyer
    3 years ago

    Good morning, Have had this RA Friend since 1979. I treat it as a friend because I do not want to give it any special status. It is there and i deal with it and its associates,(pain, restrictions and fatigue) like any other nuisance in my life. I try to keep current with what the medical community learns and has to offer in the way of weapons to keep my friend under control. I have a small and select number of real people that I vent my anger about RA. but my basic rule is that RA will not dominate my life. It can become intrusive at times, downright debilitating, but at the end of the day, I decide how much credence I give to its efforts. I am know almost 74, expect this friend to get me in the end, but on my time and at my choosing. I write this to let you know that despite all our friends tricks, we can live lively, fruitful and happy long lives. We are lucky in that we know who’s after us and our team is learning more of her tricks as we go along. Be well and strong my young colleague and you will prevail.
    Larry

  • Erin Rush moderator
    3 years ago

    Thanks so much for sharing, Larry! You have some great perspective on living with RA and I appreciate that you took the time to share your knowledge and positivity here! Thank you! Best, Erin, RheumatoidArthritis.net Team Member.

  • o330gx
    3 years ago

    Hi zayak87,
    I was diagnosed with RA end of last year at age 28. Like you, I had swollen feet and during the worst flare, I had to depend on walking stick to move around. I stopped sports and yoga.

    I was feeling pretty low back then. Not able to look after myself, thinking that I have to depend on medication while worrying about the other side effect.
    Not able to continue doing sports and other activities. I thought what’s left for me anymore.

    Fortunately, with the grace of God, I am off medication now (after about 9 months) and no recurring flare so far. I am taking natural supplements to replace that. I resumed my yoga practice but I still limit daily activities. I can’t do long distant walk now compare to before diagnosis, else I would feel the pain starts coming. It’s still bearable. With enough rest, next day I feel totally fine again, only slight stiffness.

    RA affects each individuals differently. Try to learn to read the signal your body is telling you, and be at peace with the pain. Hope you feel better soon. 🙂

  • Lori f
    3 years ago

    My Remicaide experience was rare, I had relly good results with controlling the disease, but it compromised my immune system to the point where I got osteomyelitis in my jaw, it’s a bone infection that landed me in the hospital and on IV antibiotics for 8 weeks. I am now on Rituxan but not getting as good comtrol.

  • Tiptoetammy17
    3 years ago

    Hello I was diagnosed with RA when I was 2 y/o. I couldn’t imaging getting it after becoming an adult. I am so use to the pain that I can manage it a little better now. I am now 26 y/o and have had RA for 24 years. I am on humera and its works great for me. Before the humera i was on embrel. If your meds stop working you can always ask your rheumatologist to change to a medication that you think might work. If you have any question you can always comment back to me. Hope you feel better soon

  • teejay
    3 years ago

    Hi zoyak87
    I live in Sydney, Australia and am a 28 year old female (soon to be 29! In two weeks time lol). I was diagnosed in January this year and had a very similar scenario to you. I was playing with my nephew on the trampoline almost the whole day, the next morning I woke up with pain in my knees I thought I must have just stretched out tendons or muscles and didn’t go to the doctor straight away until it got to the point where I couldn’t even walk, now like you I am dosed up on methotrexate and 5 other drugs just to help me get by. I cannot do long distant walk without knee braces, it is hard to do things we love with RA hanging over our heads, however in saying that you can get back to that fun loving active person you are, it just may take some time to learn and understand what limits your body has.
    I love riding my bike I’d ride everywhere with it, but since RA came into my world, I had to stop. I’ve since jumped back on the bike but ride on the lowest gear possible on a flat surface around the park going in loops, although it’s not to the extent I use to do, but am over the moon I can just sit back on it an push myself that little bit, its satisfying.

  • Richard Faust moderator
    3 years ago

    Thanks for writing teejay. Finding ways to stay active and get some exercise can be very important for maintaining health with RA. Since you mentioned your love of bike riding, thought you might be interested in this article from one of our contributors, Michael Booth, on RA and athletics and his experience as racing bicyclist: https://rheumatoidarthritis.net/living/athletics/.

    Best to you and keep us posted on your progress. Richard (RheumatoidArthritis.net Team)

  • Kelly Dabel moderator
    3 years ago

    Hi zoyak87, Sorry to hear about your recent diagnosis. You are not alone here. So glad that you have found a Rheumatologist who is helping you. In addition to speaking with your doctor, these articles may be helpful to you:
    Biologic Response Modifiers: https://rheumatoidarthritis.net/treatment/biologics-treatment-options-for-ra/
    Remicade Side Effects and Safety: https://rheumatoidarthritis.net/treatment/remicade-side-effects-safety-review/

    You may like to join in the conversation on our facebook page where you can interact with and hear from others in our community. We have a diverse group of people including a range of ages. https://www.facebook.com/RheumatoidArthritisDotNet/

    Let us know your questions, we’re here to support you!
    Kelly Dabel, RD Rheumatoidarthritis.net Team

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