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Understand your RA risk

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Journal, November 2, 2019

Drug choices

I have written my last few articles on the subject of RA biologic drugs. Why? For several reasons. I am finally starting to do housekeeping on my web site. Long overdue. I have a plan to make my site a place for useful, easy to find information on the autoimmune disease, rheumatoid arthritis. I have some good articles already, but I also have a bit of clutter. My new articles begin with the drugs that will affect the progression of rheumatoid arthritis.

I chose Actemra because I am currently on it. Before I started the year long treatment for my last cancer, I had started Actemra infusions. The drug was working but was stopped because of surgery, chemo and radiation. I am now on the Actemra subcutaneously with the prefilled syringe. I take my second dose today. It is an easy process. I believe it will work.

I chose Orencia as the subject for another  article because I had written a number of posts while I was taking the drug. I updated, consolidated and established a drug format.

I am writing about the RA biologics because I don’t believe we have the necessary information  about them to make our decisions to or not to take them or any of the other Disease Modifying Anti-Rheumatic Drugs (DMARDs).

When a drug company posts on their product literature in bold lettering that the drug has caused deaths, we need to understand that they would not say it  unless it was true. We need to think about it. We need to factor it into our decision making. We need to go beyond our doctor’s soothing remarks that say it is fine to take the drug in spite of the drug company’s warnings.  The doctor doesn’t live with the consequences. We do. We need information. We need to understand the risks and the benefits of taking a drug. We need to make an informed decision. We have to reach into our minds and weigh the decision. Is it worth the risk? It might very well be. But then if you took the time to be informed, you will know that you are in charge and  that you are making the best possible decision for you as an individual.

Another consideration regarding this decision is recognizing that we might have a fear of taking RA drugs. Is it a rational fear for you? Notice that young children with childhood RA (juvenile idiopathic arthritis) may be taking Orencia or Actemra. Their parents, knowingly, let them and they understand the risks of both taking a biologic or not taking it. These parents have decided that it is worth it. We know that RA left untreated, is certain to lead to  pain, ruined joints and systemic complications.

I read both the drug package inserts for the patient and for the professional. The inserts are designed to be understood. The huge, unfolded page of thin paper is just awkward to handle. I enjoy the amazing information. It is much more satisfying than the the drug sheets the pharmacy hands out. I also review the drug’s web site. I read about the clinical studies on the drugs. Both Orencia and Actemra are beneficial drugs.

There was a time when aspirin was the drug of choice. Then came gold injections. Then came sulfasalazine.  They helped the symptoms but did not stop the disease progression. Disability came earlier in the disease process, irreversible, severe. I remember one of my first patients as a graduate nurse. He was a small, gowned form taking up very little of his hospital bed. He was immobile and curled toward one side with no sheet to cover him. The contact of the thin cotton on his skin was too painful.  His RA body was extremely thin, crippled and in constant, severe pain. In those days, IV meds were not common. Pain medicine and antibiotics were given into the muscle. There were no joint replacements. Methotrexate was only a chemo drug. The biologics were an unrealized dream.

We are fortunate to have made progress. Most of us have better choices. We need to make the effort to understand those choices. My hope for my articles is to give you the information to help you make those informed choices.

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