A long year

My husband was diagnosed with RA one year ago. He woke up one morning and nearly collapsed getting out of bed. His legs just wouldn’t hold him up.
After several minutes he was able to move around better but had a great deal of pain in his hips.
I must mention that my husband up to that point was extremely active. Bike riding, scuba diving and working out, never missing a day. He loved being very physical with hiking at extreme levels.
This illness has been not only been physically challenging but just as debilitating emotionally for him.
Every time we make some progress something happens and we find ourselves back to square one.
He’s had to have some surgeries which set us back due to the fact he had to go off the medication. And then, complications that take forever to subside.
He’s a tough cookie and wakes up every morning eager to start again, hopeful that he will have a good day. I don’t think he has had three good days in a row since this all began.
He started taking high doses of prednisone which took us a year to wean off, now he takes methotrexate and Humira, which doesn’t appear to be helping this week.
I suppose we now are just coming to the realization that this is a forever journey now which is extremely difficult to wrap our heads around some days.
Presently he is having a great deal of trouble with his hands swelling and pain. We’ve tried ice, which helps. His hand is so swollen, he sometimes can’t close them. I ordered the infrared gloves which I hope will help.
I’m frustrated with the doctors not really saying a whole lot and the rheumatologist just wants to see him every three months. I worried that the Med’s aren’t working enough and I worry about more damage to his joints especially his hands.
Too tired to continue tonight… We are grateful for each day; I just don’t know if there is more that we can do to help him.

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Comments

View Comments (5)
  • MrsJohnson33
    2 years ago

    Dear Nan,

    Saw your story. Tell your husband to hang in there, don’t give up. I was diagnosed in Aug. 2014 when I was 49. It was a long battle for me because pain started in my neck first (not typical for RA) in Dec. 2013, so my PCP treated me for neck pain. By the spring of 2014 I had pain also in my shoulders, upper and lower back, hips and knees. I stopped going to my gym the winter of 2014 because I was in pain and thought working out would make it worse. In the summer of 2014 I finally went back to my PCP with these other issues and he conducted blood tests and referred me to a rheumatologist. In Aug. 2014 I was diagnosed with RA. I was on Prednisone for over a year while waiting for various DMARDs to work. I was on oral methotrexate (MTX) then switched to otrexup (injectable MTX pen) nothing seemed to work for me so I started humira (a biologic) at the end of this past August. I am finding some relief but only time will tell….

    Here is my advice to your husband. Remember every RA patient is different. What works for one may not work for another. Learn as much about RA as you can. Great websites are the Arthritis Foundation and the American College of Rheumatology. Find a rheumatologist that listens to you and looks at you when you speak (and is not typing into their laptop while you are speaking). Write down questions before your appointment and bring them with with you. Accurately describe your pain to your doctor and if you are in bad pain, don’t wait the 3 months for your next appt., call and reschedule for an earlier appt. (I had to do this a few times and was always able to get an appt. within a few days of my call). Do understand it can take a few weeks to a few months for the full effects of the medication to work (this may be why your appts. are scheduled every 3 months). If the medication doesn’t work for you ask your doctor what his/her plan of action for you will be. Be knowledgeable of the medication options out there and be part of the decision making. And most importantly, always remember you are not alone. There are many of us out there like you and reach out to us via this website and others. The arthritis foundation may have a chapter in your state that can also assist with local support groups.

    As far as exercise and being active; my mistake was eliminating going to my gym. Everything you will read will tell you exercise is important. Just remember “baby steps”. A 10 minute walk, low weights at low repetitions, one or two sets to start. I was amazed at how good I started to feel when I went back to my gym. I do 20 – 30 minutes on the elliptical and full body work out (with low weights) on the weight machines and some mat exercises for my core and general stretching. On days I have much more pain or a flare, I decrease the workout or just do the elliptical for 20 minutes. Movement is good for the body.

    Please update us on how your husband is doing. God Bless.

  • 29nhrsr
    2 years ago

    Hello Nan,
    I too was very active and when mine hit me it did a number on me as I was in a chair for about six weeks you see I have severe RA and had it since I was 33 now 57.
    I have been on every drug that is out there
    I have learned in my experience that the drugs don’t work as good with in a year they start to not help my RA and I have to change to another drug as my body does not react to that drug anymore ..
    RA is really a terrible disease as I have had several foot surgeries and one intestinal surgery and many limp nodes remove.
    I am on Humira now and I only take predisone when I am in severe pain or having a flare up of the pain and only for a couple of days until it is where I can stand it.
    I go back next month and they are putting me on Remicade again cause as I remember this was the only drug that gave me relief enough to do some things..
    But I pray each day that the lord lets me get up and still put my mind on others so I don’t think too much about the pain I do feel.
    My hands are showing some deformity but I still keep on thinking one day I will feel better.
    My elbows are fused along with my wrist ..When I do have pain I also will take coated Bayer Asprin as it does help with stiffness and pain..
    I don’t like to take pain pills and stay as far away from them as I can..
    So if the medicine is not helping him tell his doctor he will change it that is what they are there for but you need to tell him you want to change the medicine..

  • AMBiermann
    2 years ago

    Hi Nan,
    I have had RA for about 27 years. I was first diagnosed at 25 years old. Sometimes Humira takes about 8 weeks to kick in and methotrexate a little less. It can be difficult to find the right drug or combinations of meds that gives the best results. I would also strongly suggest finding another rheumatologist as if he is having a great deal of trouble, the right rheumatologist would want to see him sooner. It took me time to find the right doctor. I also know that it can be very difficult for you. Hang in there. 6 years ago, I was in a walker recovering from a total hip replacement due to RA after years of great pain. Today, although I’m not in remission, I work out with a trainer, golf and am able to go on 30 mile bike rides. My best to you and your husband, Angela

  • Dave
    2 years ago

    Thanks for sharing, Nan! I can totally relate to your husband’s situation. I was diagnosed about a year and a half ago. I know what it is like to go from having been a very active person to having to give up a lot of what I have enjoyed for years to this beast called “RA” and how difficult that can be. Most days i deal with it just fine, then there are days that it kind of get’s me down. Just being honest here. I refuse to let it control me and I will not stay “down” very long. I look around and see others who have it a lot worse than me and that brings back the thankfulness that I honestly try to express everyday for the blessing that I have and do enjoy. Life is full of bumps and bruises and even with the RA I have enjoyed a very full life (and still do!) One day at a time and never give in! Hope that things improve for your husband and you! God bless, Dave

  • Lauren Tucker moderator
    2 years ago

    Hi Nan,

    Thanks so much for sharing your husband’s story with us. He is so lucky to have such a loving and supportive wife like you. We are glad you reached out to us because he is not alone in his symptoms and the ups and downs that RA brings each day and you are not alone in being such a wonderful caregiver.

    Rob Osberg is a writer for us and a caregiver for his wife who lives with both RA and MS he writes some amazing articles on being a caregiver that I thought you may like, here is one: https://rheumatoidarthritis.net/living/a-care-givers-thoughts-worrying-about-worrying/

    Additionally, we are sorry to hear that he is having trouble with pain and swelling, while it is a common symptom, here is an article that our community generated to help with pain. https://rheumatoidarthritis.net/living/community-ideas-managing-pain/

    Lastly, we know others have found it helpful to get a second opinion from a rheumatologist and only you know what is best, so I thought this link would be helpful in giving some information as well finding a rheumatologist near you: http://www.rheumatology.org/Directories/Find-a-Rheumatologist

    Please come back and let us know how you and your husband are doing. We wish you both all the best!!
    Lauren (Community Manager RheumatoidArthritis.net)

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