I spend a little time each week reading blogs and Facebook posts related to RA (Rheumatoid Arthritis) hoping to gain a little more insight into the condition that has become a daily reality in my life over the past 4 years. Having finally found the right combination of Miracle drugs to get my RA under control (in 'Remission', in the medical jargon), I have great empathy for those who are still searching for this result. RA, it seems, is the ultimate in 'Personalized' illness in that each individual seems to have a little different response to both the disease and the various treatment options available. As such it is difficult to say anything about my own experience and hope that it can be helpful to others suffering the effects of RA. There is an aspect of my experience that I feel can be of some help to anyone wanting better control of, and relief from, the symptoms of RA... Focus.
I have come across a common thread in many of the Blogs and Posts I read online lately. Many individuals talk about taking a 'Break' or 'Rest' from their medications. Some talk of 'Cleansing' their body by stopping the medicines. My experience with RA medications over the past several years has given me a much different perspective about the medications I am on.
My knowledge of RA begins a long time before I began to experience any symptoms myself. When I was a Teenager my Mother was diagnosed with RA. As the years passed I watched as her hands and feet slowly deformed and became unusable. After many years the disease had effected knees, hips, and shoulders as well and she could not walk without assistance. In those days there really weren't any treatments to speak of that could slow or halt the progression of the RA, most treatments were meant only relieve pain or restore motion (through joint replacement surgery). When she died (after 30+ years of suffering) she had had joint replacement on her hands, feet , knees, hips and shoulders. In the end it was not RA that took her from us, rather the side effects of a compromised immune system culminating in Pneumonia and Infection.
I don't ultimately know that much about the medications that were tried in the course of my Mothers RA. I know she took a lot of Motrin for Pain, and would have a course of Prednisone from time to time (some things never change). Toward the end of her life Methotrexate was beginning to be in use for RA treatment, but by then most of the damage to her joints had already been done.
Fast forward to my own RA history. It took my GP Physician almost a year to come up with the initial diagnosis of possible RA based on the unique pattern of inflammation that RA displayed in my hands. January of 2011 was when I finally managed to get in to a Rheumatologist (that is another story entirely) and get a definitive diagnosis and begin treatment. My doctor started out with Methotrexate and Prednisone. Once the Prednisone was removed it became clear that Methotrexate alone was not enough to get into Remission. After some more experimentation it became clear that I needed to try one of the Biologic treatments and we settled on Enbrel, because of the Encourage Foundation which would allow me access to this horribly expensive drug at no cost since I have no insurance and my income met the requirements.
My first experience with Enbrel was extremely positive. I began to see symptoms reduce within weeks and after the first 2 months or so achieved Remission. Then through a series of miscommunications I lost access to the drug after only a year of treatment. In total I was off of Enbrel for about 4 Months when I got the application process renewed and regained access to the drug. This was just long enough for my symptoms to return in force.
The second attempt at remission was sadly not as quick as the first. Nearly six months into the Enbrel this time and I still had significant symptoms and more bone erosions. Finally at about 9 months the RA finally submitted to treatment. While I still have morning stiffness and occasional flair-ups, We (My Doctor and I) are pleased with the results and hope to have this condition persist as long as we can sustain it.
This is a long post all to make a simple point about RA medications. There is no 'Cure' for this disease. 'Remission' does NOT mean that we have defeated RA. Lose Focus for a time and all the pain and stiffness and Joint damage will come back with a vengeance! Unfortunately human nature seems ready to forget pain once is is gone for a while and we think that the medications are optional. They are NOT optional and RA is quietly waiting to take over control again if we give it a chance! While each of us will have a different experience with RA, I have become convinced that Finding our Focus when it comes to whatever treatment Works for us is the Key to long term control!
Russ...
