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My RA Journey. Feeling Depressed.

Hello everyone. I was diagnosed at age 54. This disease reared its ugly head one morning. I was awakened with this fiery pain in my wrists and hands. Multiple trips to Emergency Rooms did nothing as they treated me like an opioid seeker. Was so humiliating.

MY Orthopedist listened to my woes without judgement. He immediately tested me for Rheumatoid factor, Sed Rate, Creatin Bun Ratio and CRP?. I was positive for everything.

Fast forward 2 years. I’ve tried Methotrexate, Humera, Xeljanz and Sulphaserizide. All worked about 4 months.

I am to start Remicade Infusions on Thursday. I am so scared. Thru the nurse taking her time getting insurance and me not allowed to take any RA meds thus past month, i am in tremendous pain. Flares in Shoulders, wrists, hands and hips. Also feeling like I have the flu.

I complain so much to my family to the point they just tolerate my complaints. I DO NOT BLAME THEM. I hate this so much.

I don’t know how much more I can handle. I want to give up So tired of this intense pain.

The doctor out me on 40mg of prednisone daily until infusions start. I am afraid that damaging my body. ,Also terrified of infusions

I AM SO SORRY TO WRITE THIS LONG LETTER. I just someone who understands.

Thank You

Sandra

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Cyd
    6 months ago

    Hi Sandra,
    No need to apologize!! Many of us here feel the same way and have been through and/or going through the same misery. You’re lucky your family tolerates your complaints – I no longer say anything; they don’t get it. I”m not sure I would get it if I wasn’t going through it. “So you have arthritis, what’s the big deal?” HA! If people only knew!! I don’t think I knew the real difference between osteoarthritis and RA until I felt it – and I do have both. I’m almost 57 and have already had both knees replaced, The pre-surgery pain was horrible, but it wasn’t constant like RA pain. Also, I have been on prednisone since being diagnosed 5 years ago, and initially I felt pretty “wound up.” When I read your story, I thought you kind of “sounded” wound up too. How long ago did you start the prednisone? Hang in there dear, read more of others have written; I really believe it will make you come to know you are NOT alone and will make you feel better. {{{HUGS}}} for a pain-free tomorrow! ~Cyd

  • Lawrence 'rick' Phillips moderator
    6 months ago

    Sandra, If it helps, I can say that Remiciade is one of two biologics I have used the longest. (I have used six). I understand the pain and upset and hope you find the very best outcome. If not, do know that there are many options and it is worth it to keep trying.

  • JBehr
    6 months ago

    Dont apologize the pain and fear are hard to deal with. I was diagnosed 10 plus years ago. I cant take the biologics because I’m allergic to them. The other ones have contributed to a lung disease caused by RA so along with the pain breathing has become difficult at times. Just know that there is.always someone there to talk to

  • ghlu8v
    6 months ago

    The right infusion could be a game changer! Don’t be scared of it just weight the risk benefit ratio. To me the benefit wins! I can’t wait to get my infusions! I typically flare about a week before my rituxan infusion. But it’s been a game changer for me. Out of all of the Biologics is the only one that’s helped me so far longer than a couple of months.

    Good luck and ask your rheumatologist for a mild painkiller to use during flares. If he won’t ask for a recommendation to a pain doctor. You shouldn’t have to suffer through a flare without any help

  • TwistedHeart
    6 months ago

    I understand. I’ve been on this road for 3 years now. I can’t take prednisone (I had all the side effects) and I’m looking at trying med number 6. I,too, get 3-4 months before they stop working.

    You’re absolutely NOT alone! This disease *hurts*. It kicks depression into overdrive.

    I started crocheting octopi for preemies. I can’t do it very fast, not like I used to. But it makes me happy to complete one (even if it takes weeks) because I know it will help a preemie.
    I’d suggest you find something that makes you smile. Something that gives you peace in your heart.
    It’s ok to be afraid. The meds we take are scary! Talk to them when you go for the infusion. Ask questions. And keep asking until you feel ok.

  • Richard Faust moderator
    6 months ago

    Hi Sandra. Sorry you are struggling and in pain. Know that there are people here who understand. We have plenty of community members and a few contributors who do infusion treatments. One of our contributors wrote this article on what to expect when getting an infusion treatment: https://rheumatoidarthritis.net/living/infusion-medicine-what-to-expect/ and another wrote this one with tips on getting ready on infusion day: https://rheumatoidarthritis.net/living/getting-ready-infusion-day/. Hoping this new treatment works for you and please feel free, if you like, to keep us posted on how you are doing. This community is here for you. Best, Richard (RheumatoidArthritis.net Team)

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