RA left my glass half-full: Changing Rheumatoid Arthritis Medicines | Rheumatoid Arthritis Warrior

RA left my glass half-full: Changing Rheumatoid Arthritis Medicines

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I knew the glass was half-full from RA.

Two months ago, I could do about half of what I could do before RA. The doctors kept saying my Rheumatoid Arthritis should be getting even better. I really wanted that, too. The doses of my RA medications were as high as they could go: Humira weekly (that’s a double dose); and methotrexate 25mg by injection (much more is absorbed by injection). Maxed out at those, my functionality was still about 50% on a good day.

So, when the doctor said lets try something else, I was game. Well, we went to Enbrel, which works almost the same as Humira. But, Humira is a long acting 2-week dose and Enbrel is a weekly dose. I asked the doctor and two pharmacists: Are we essentially cutting my RA medicine in half? They all said, “Not really.”

Counting on Rheumatoid Arthritis medicines

Every time I inject myself, I pray that it will help me get well. And then I thank God that I have the medicine and remember those who have had Rheumatoid Arthritis without these strong medicines to help them survive it. It really does help me remain hopeful – not to mention how that helps me stick myself.

Well hopefulness aside, it’s been over a month. I am 5 shots into the Enbrel regimen, and it’s not looking good. Every week is worse. I am productive only about 2-3 days per week now – sort of.

There is a lot more pain, of course. There is stiffness and weakness. There is fever, nausea, and lack of appetite. But the worst are the Sjogren’s syndrome and the fatigue. Sometimes, I literally cannot move. I cannot lift up my head.

There are no words to accurately describe how desperate it feels. The tiredness is so extreme. I feel like I’m falling down a hole in a cartoon; I keep sliding downward and there is not a bottom. Gravity is so strong.

Now, I am kicking myself for changing the prescription to begin with, of course. I knew the glass was half-full. I was grateful for that. What will this cost me? All of the suffering I could describe is nothing at all compared to wondering about the unseen damage that RA is causing within my tendons and joints and my eyes and my nerves.

But that’s not the worst. The worst thing about my half-full glass having spilled is the time that RA steals. Calendar pages fly by and my life is going on without me. Ouch.

I want my half-full glass back. And next time, I will put a sippy cup lid on it.

Update November 2009: The Life of a Professional Patient, Blog #3

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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8 thoughts on “RA left my glass half-full: Changing Rheumatoid Arthritis Medicines

  • November 8, 2009 at 10:59 am
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    Your post reminds me of the fact that despite all the advances & the biologics; we have not been able to conquer RA in the real sense.

    Reminds me of the lines by Mathew Arnold,

    Not bothered to see me crying with pain,
    That Physician with great name & fame;
    Shook his sapient head and gave,
    The disease he cannot cure a name!

    Kelly, I sincerely hope that you get your ‘full-full’ glass back.
    But not to forget, I would still like to add…..the destiny of a RA patient is determined in first six months itself. An early diagnosis n treatment can help everyone keep his/ her glass ‘full-full’.

    Reply
  • November 10, 2009 at 8:38 am
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    Thank you for your good wishes, Doctor. And I had not read that poem before – how well said!

    I agree that early treatment is the best we have to offer right now. I will continue to report that here.

    It would make a big difference to have the general practioners be able to recognize that early treatment is important and what early RA looks like. THAT I believe is key – educating those doctors.

    Reply
  • August 17, 2012 at 4:58 pm
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    Kelly,

    I know how you feel. I was on Plaquenil for over a year but had to stop was getting the beginning of the Plaquenil bullseye and I could tell my eyesight was getting worse. Now I am on the beginning dose of MTX and was on folic acid, started having hair thinning and mouth sores. The doctor changed me to the other form of folic acid(the name leaves my mind right now). But I hurt as bad if not worse now than I did when I was first diagnoised. And this week has been TERRIBLE!!!. The nausea and fatigue the last 3 days have been horrible. THANK GOD they don’t both hit at the same time. I just want my life back before RA!!! I know that is not possible, but I can wish.
    My dad had the same thing and he went into remission on MTX and stayed that way for 19 years with only an occasional flares until he died of a massive heartattack in May of 2009. God I only pray that I could be that lucky. But it don’t look that way right now.

    Feel like I am going down hill fast and can’t stop the spiral. Good luck on your meds. I will be praying for you and me both.

    Reply
  • June 3, 2013 at 4:54 am
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    Have only just found this page and this is the first article I have read. I too am a RA sufferer and was on enbrel and mtx for over a year and my glass was 70% full or so on average. I swapped to humira and mtx after hearing great things and have gotten much worse over the past ten months. About to go back on enbrel to try getting a bit more water in my glass. Amazing how some things work so well for one, but not another :/ if only there was one drug that worked for all rather than spending years trying to find the best combination….

    Reply
  • August 16, 2013 at 9:27 pm
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    I just wanted to drop a line here and let folks know what I recently discovered. My arthritis may or may not be rheumatoid. My blood work still comes back normal. My pain is not as severe as most I suppose, but every day, both of my hands are stiff and sore and at least one other joint as well. The pain is in nearly every joint now (not all at once). I have good days and bad. I have continued to hold down my office job, although I miss at least a day a month, and as of late, I have been taking 2 hour lunches so I can come home and sleep. The fatigue has been horrible. It’s not the regular “tired” that you get from working too hard or not getting enough sleep. I have tried Plaquinel, Methotrexate and recently I have been taking Tramadol and Cymbalta.

    I have given up on Rheumatalogists (I have been through three). It isn’t entirely their fault, but I feel like none of them really listened to me or cared. Unfortunately for us, as well as the doctors, they are being forced to do their notes while the patient is with them; thus they aren’t giving us the attention we deserve (and pay for). I am lucky in that my GP is a D.O. and she REALLY listens to me and I feel like she actually cares. Anyway, after listening to me complain about my extreme fatigue and soreness and not being able to clean my house after working all week, a friend of mine gave me something. It was a pill. She was taking it for ADD symptoms. She said for me to try it. At least I would have the energy to get my stuff done around the house. And yes, I know I shouldn’t be taking other people’s meds, but desperate people do desperate things. It was Vyvanse, and for me, it is a miracle. Two hours after taking it, I realized something…I had NO PAIN. WTH?? I looked at my husband and said, “honey, I have absolutely zero pain right now, and it must be this pill.”

    I thought it was a fluke and I searched the internet to try to understand what was happening to me. I ran across what I expected mostly, that it was for ADD or ADHD, sometimes chronic fatigue syndrome. And then I saw a short little blurb about more testing being done on it, because it may have some pain relieving benefits.

    It is a controlled substance, and I didn’t know how to approach it with my doc without sounding like I was one of those people just looking for a “fix.” I should have known better. My doc trusts me, and when I related to her what I discovered, she said she was planning on giving me a scrip anyway for my fatigue. She said I could give it a shot and come back in a month. It has been almost a week (one pill in the morning and that’s it) and I have been virtually pain free, except for the mornings when I am initially stiff and sore. It also gives me the energy I haven’t had in years. I feel like me again. It does have some side effects of course. I have lost my appetite, which is good for me because I am about 30lbs overweight. And once in awhile I feel a little fluttery. But for me, it is so worth it. I don’t know how it works or why and I have no idea what the long term effects are. Maybe I don’t have Rheumatoid Disease at all, but some other joint ailment. My doctor doesn’t know either. I just wanted to put this out there in case there are others who are in the same boat. Like I said, it is a controlled substance and therefore it can be abused, so I had to sign a drug contract and I will be closely monitored. I will keep you posted 🙂

    Reply
      • August 17, 2013 at 11:16 am
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        Thanks Kelly. I should also mention I have been having a little trouble sleeping. So weird how you can take a pill in the morning (7am) and still feel it some 14 hours later. I still have some neck pain, but I think that is a soft tissue issue…lol. I am just going to enjoy the pain free joints while I can.

        Reply
  • September 26, 2016 at 3:09 am
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    How long ago did you start enbrel? I was having the same problems with Humira and was switched the same as you. I would say I was probably 50 percent better than without also. Its been one week on the enbrel no better yet

    Reply
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