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New diagnosis, medication inconsistent, seeking treatment

  • By Patwin7077

    Hello everyone. I am new here to this support community, and am looking forward to learning as much as possible about my new diagnosis, and also contributing what I can to help others.

    I was diagnosed with fairly severe RA in December of 2017. After a few weeks of increasing pain, I was at the point where my knees, ankles, wrists, elbows, shoulders, fingers, and even my toes and jaw were sore and swelling. Symptoms got slightly better throughout the day, but were downright unbearable in the morning after lying still. I wasn’t sleeping, couldn’t open jars/cans etc, and struggled to complete many daily functions. I was completely incapable of physical activity or working out of any kind.

    Methotrexate did absolutely nothing for me after a number of weeks of increasing dosage. The oral steroid prednisone gave me a certain amount of relief for a bit. I am currently on my 2nd week of the biologic injection Enbrel. I noticed an improvement almost immediately the first week, but it faded by the next week. I am 3 days into the 2nd week and feel ok. IT’s definitely the most effective medication I have taken, and my symptoms are noticeably better.

    However, I am still experiencing swelling and pain in my knees, a few of my knuckles, and shoulders. I know the medication sometimes takes many weeks to take full effect, so I still have hope that symptoms will continue to improve.

    My general questions are for anyone else that has taken Enbrel

    1.) How long did it take for the medication to fully impact your symptoms?

    2.) Treatment: Even with the medication, what are the most effective ways to reduce swelling? I feel like the medication is helping new symptoms from developing, but I feel like if I was able to reduce the swelling and soreness in my knuckles and knees it would really help.

    3.) my primary concern is regaining full range of motion in my knees. I have disc injury in my lower back as well, and have daily stretches and exercises that maintain my lower back and core health. Doing these exercises has been impossible on the other medications, but still challenging and painful currently on Enbrel.

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  • By Richard Faust Moderator

    Hi Patwin7077. Sorry to hear about the diagnosis, but glad you have come to a place you can get information and support. RA drugs can take a while to take effect. As this article form our editorial team notes, methotrexate can take up to 12 weeks to fully take effect: https://rheumatoidarthritis.net/treatment/methotrexate/. Enbrel can also take a while. This article from our editorial team reviews it: https://rheumatoidarthritis.net/treatment/enbrel-reviews-how-does-it-work/. Of course, every individual is different and thus how they will react to the drugs is individual. Hopefully others will offer their direct experiences.

    Concerning range of motion, you may want to ask your doctor about whether physical or occupational therapy would be beneficial for you. This article takes a closer look at these courses of therapy: https://rheumatoidarthritis.net/physical-therapy-and-occupational-therapy/. In addition, thought you might be interested in this article from one of our contributors on the importance of physical therapy and his experience with it: https://rheumatoidarthritis.net/living/another-day-at-the-pt/.

    Hope this information is helpful and please know that you are always welcome here. Best, Richard (RheumatoidArthritis.net Team)

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  • By Tamara Haag Moderator

    Hey Patwin 7077,

    I’m so sorry to hear about your recent diagnosis. While any point in life with RA can be problematic, the first year after the diagnosis is particularly difficult. Between trying to find a treatment plan that works for you and going through the emotions of processing the diagnosis, it can be a very challenging time. I’m so glad that you’ve found our site and have reached out with your experiences and questions, and I hope you will find our online community to be a helpful resource.

    I’ve been diagnosed with RA for 17 years, and I’ll answer your questions as best I can, with the disclaimer that everyone is different, even with the same disease:

    1) I was on Enbrel for 7 years, and it worked really well for me. I can’t remember exactly how long it took to take full effect, but it was definitely 4-6 weeks. I’ve been on about 10 different meds for RA over the years, and the only one that has ever had a rapid effect is prednisone. All the others have taken weeks or months to reach full effectiveness.

    2 & 3) Inflammation is a symptom in and of itself. You are correct that you would fare better if you could get the swelling to decrease. I have often downplayed the importance of inflammation, as pain really screams for attention. However, my rheumatologist explained to me that it is inflammation, and not pain, that can lead to joint damage. I wrote about this in this article, in case you find it of interest: https://rheumatoidarthritis.net/living/just-swell/.

    I definitely recommend that you talk to your doctor about the swelling. It is likely that if Enbrel will be effective for you, it will decrease the inflammation as it hits full efficacy. However, everyone responds differently to medications, and it’s possible your rheumatologist may want to tweak your treatment plan by adding something to the Enbrel long term or by doing a round of corticosteroids short term.

    Some people find icing to help with their swelling. For me, cold makes my joints hurt too much to keep the ice pack on, but you could try that. The other thing that can help with swelling feeds into your next question: range of motion exercises. Doing some exercises may increase inflammation while you’re doing the activity, but the increased circulation can help decrease inflammation over all. Also, although it can be painful, exercise is an important component of an RA treatment plan. When my body is in the most pain, often the only exercise I can tolerate is swimming (or just stretching and doing range of motion exercises in the water if I’m not up to swimming). There are the downsides of the time and expense it takes to get to a pool, if you have one in your area, but I find the water supports my weight off my joints and enables me to move far more than I can on land. When I’m not in a lot of pain, low impact exercises such as yoga, walking, and cycling (if my wrists aren’t too bad) are my go-tos.

    I apologize for the delay in responding to your post. Now that it’s been three more weeks on Enbrel, please share an update on how you’re doing, if you feel so inclined. And please know that we are here to listen and to support you.

    Wishing you all the best,
    Tamara

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  • By Monica Y. Sengupta Moderator

    Hey Patwin!

    I wanted to chime in as well about physical therapy and exercise. I know Richard already shared some articles about PT but I found it quite useful as well! The first few months were hard but as my body calmed down to it, I noticed I got stronger.

    Tamara swims, I rock-climb! It’s not as hard on the joints as most people think. It is a full motion sport and if you do the introductory climbs it loosens your muscles, joints and builds finger strength. The first few times will be difficult but the stretch feels great!

    Unfortunately, as Tamara and Richard both said, these medications take time to work. But, it’s important you continue to speak to your doctor about your symptoms. You can work together to find some relief.

    Icing and heating also provide some relief (I prefer heat) but many of the community say ice reduces inflammation and numbs the pain for a little while.

    Thank you so much for reaching out!! Please update on the Enbrel! Thinking of you, Monica (RheumatoidArthritis.net)

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