Monthly Archives: July 2013

Hope and Trepidation: Starting A New RA Med

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I feel both hope and trepidation as I start the new JAK inhibitor, Xeljanz (pronounced zel-jans). This isn’t the first time I’ve felt this way. I’ve always been a bit uneasy starting other treatments for RA from the DMARD (disease modifying anti-rheumatic agent) to the  biological agents. Many of these drugs are chemotherapy or chemotherapy-like with terrible side effects that make you think twice before taking the medication. The trepidation felt in taking such a dangerous medication is held in check by the hope that maybe this is the drug that will work to stop the pain, control the inflammation, and slow down the joint destruction.

I know I’m not alone. Many of you have started a new RA medication and have cringed when you read  the words “life threatening” to describe some of the side effects associated with the medication. Some of these side effects are caused by lowering the immunity of your body to fight infections that would otherwise be harmless. Sometimes the life threatening side effects can be cancer brought on by use of the medication, such as lymphoma. What the general public does not know is that we gladly take these medications because we want to be better. We want some semblance of our old lives back and if there is a slim chance the medication can do that for us we will forgo the side effects. Where I think most rheumatoid patients get in trouble, is that they have false expectations of the medications. I know that I did in the beginning. As I’ve stressed in previous blog entries, you must get the pain under control before deciding if the drug is working or not. In some cases you may not know if a drug for RA is therapeutic until you’ve been taking it for 3-6 months and then the only improvement is in your lab work, especially for someone like me who is sero-negative. The only measure that any biological agent or DMARD has had an impact on my disease process is by measurement of the CRP and ESR on labs…. not by the way I felt because pain screamed louder than any other symptom.

Xeljanz will be added to the long list of medications I’ve taken during the last four years since I was diagnosed. This medication is unique in that it is the first of its kind that works on the JAK pathway and it is only recommended for those with moderate to severe RA. My rheumatologist had me sign an informed consent before prescribing this medication. I have a new rheumatologist and this is the first time I had to go over a consent form before being allowed to try a medication. For those of you who may not know, an informed consent is a legally binding, medical form that most sign before surgery that states that you understand clearly the risk of the procedure. The informed consent for Xeljanz was four pages long with most of the type face in bold print so that I clearly understood the “life-threatening” side effects of taking this drug. Just getting a common viral infection that is carried in the public could kill me while taking this drug. Several malignancies have been observed in patients with Xeljanz with the worse being lymphoma. The consent says in part, “In seven controlled rheumatoid arthritis clinical studies, 11 solid cancers and one lymphoma were diagnosed in 3328 patients receiving Xeljanz with or without a DMARD, compared to 0 solid cancers and 0 lymphomas in 809 patients in the placebo with or without DMARD group during the first 12 months of exposure. Lymphomas and solid cancers have also been observed in the long-term extension studies in rheumatoid arthritis patients treated with Xeljanz.” Still the hope that is drug will be the one to give me my life back prevails and I am willing to take that risk. That should speak volumes to the casual observer of this disease from the side of wellness and should wipe away any doubt to the seriousness of the disease and the degree of suffering one experiences; that I would risk my life for hope. It’s not “just arthritis” it’s my life.

Xeljanz is designed to work deep inside the cell on the Janus-associated kinase (JAK) inhibitors. This differs from other treatments like biologics and DMARD agents because these agents work from the outside of the cell where Xeljanz works inside the cell. Deep inside the cell, Xeljanz works to disrupt cytokines along the JAK pathway that are involved in the inflammation of RA. In a study of 3000 patients, 59% of those who received Xeljanz alone responded to the medication which is very hopeful! Some patients began to benefit within two weeks of treatment.

Xeljanz is administered in pill form, twice a day. For the first two days, the medication did upset my stomach. I have gastric reflux. I did experience some extra tiredness, but nothing else. It’s too soon to tell just a few days into the treatment if Xeljanz will work for me. Because of the dangers associated with Xeljanz I will need to have labs drawn every 3 weeks to make sure that my white blood cells, neutrophils, hemoglobin, lipids, and liver enzymes stay within a normal range. If at any time the Xeljanz causes unacceptable ranges in my lab work I will be taken off the medication.  Since this medication is so new, there could be untold effects of long-term use that the researchers are not even aware. Again, those of us with RA do not take these drugs lightly. Much thought and consideration of all the outcomes is weighed heavily.

I am a Christian and I place my hope in Christ. I’m praying that he will use Xeljanz and the team of doctors I have working on my case to halt this progressive disease and to give me back some quality of my life.  This is my last chance to try a medication that is not administered intravenously. Should Xeljanz be a failed medication for me we will move on to the IV drugs. If you believe in God and the power of prayer, would you support me in prayer that this time? Your support in prayer would be most appreciated.

If you would like to learn more about Xeljanz, you can visit their webpage at http://www.xeljanz.com. If you are being prescribed Xeljanz and have insurance, please take advantage of the co-pay card at their website which will take care of your co-pay amount for this drug up to $8000 per year. If you are not on Xeljanz but some other biological agent or DMARD and are struggling financially to pay for these medications, please check the drug webpages. Most of the pharmaceutical companies that make these very expensive drugs do have some sort of co-pay plan or a program for the uninsured.

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Advertising & False Expectations

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Recently, I received three magazine that focus on arthritis and I’d be remiss if I did not address the advertizing contained within these magazines and how negatively advertising has impacted the general public’s view on rheumatoid arthritis and our own view of our illness. It’s just not magazines for arthritis patients, but main stream magazines, billboards, and television commercials promoting expensive biological agents that depict patients performing activities that are unrealistic for most moderate to severe RA sufferers. It goes beyond the multimillion dollar heavy hitting biologic drug makers trying to get their share of the market, it also involves the manufacturers of over the counter supplements and gadgets.

Not even two pages into a popular arthritis magazine there is an ad for an over the counter joint care supplement that depicts a couple dancing a jive in a tropical setting which would seem to say, “if you take this supplement you too will be able to enjoy a night in the tropics dancing a jive,” which couldn’t be further from the truth. The ad even states that the supplement keeps your joints jumping. Sigh. I don’t know about you, but I haven’t jumped in four years since I was diagnosed with RA. When a layperson sees these ads it discredits the patient which feeds the misconception the general public has about RA. I mean, can you imagine having tried to educate your loved one about why you are fatigued, in pain, and are missing work, then that loved one accompanies you to the rheumatology office just to find magazine after magazine about arthritis depicting advertizing of miracle drugs, patients engaged in outgoing activities, and drug company posters and literature everywhere that shows active, healthy looking people? The ultimate conclusion made by the layperson is that arthritis isn’t that bad and that your aren’t being truthful about your disease which is so hurtful.

There are well-meaning people who always want to help by telling you about the latest TV infomercial supplement that cures aches and pains and will make it all better. As a nurse, I have concerns anyway about these supplement claims and advertising because supplements are not regulated by the FDA and can interact with many prescription medications to cause adverse effects. Sometimes these adverse effects are not caught by the doctor or the pharmacist because most patients do not think to add supplements, minerals or vitamins to their medication list because they see them as being harmless. I urge everyone to add any over the counter medication you take to your medication list you share with your physician for your own health and protection. In fact, the July/August 2013 issue of Arthritis Today magazine issued a health watch article about supplements. Apparently several Americans were taking a supplement touted as a natural pain remedy called “Reumofan”. It was found that this supplement actually contained pharmaceutical ingredients of dexamethasone (a steroid), diclofenac (a NSAID) and methocarbamol (a muscle relaxer). This supplement has since be recalled, but you can imagine the complications this could have caused had the patient taking this drug had an allergy, an opposing disease that disallowed some of these pharmaceutical ingredients, or caused an adverse interaction with a prescribed medication. The article in Arthritis Today recommends that you can protect yourself against something like this happening to you by avoiding supplements that claim to have the same effect of prescription medications. In addition, try to stay with a name brand of supplement that you trust. What is so frightening about this is that RA patients are vulnerable because we want our old lives back and we want the pain to stop. Unfortunately, there are plenty of sharks out there that want to feed on our vulnerability, so buyer beware.

The trend in advertising showing people engaged in sporting events, leaping in the air, or hiking with a 50lb backpack in the mountains are being replaced by more realistic advertizing due to the outcry by individual rheumatoid patients and RA patient groups. In fact, I have seen several of the big biological manufacturers turn the tide by depicting ads showing difficulty in opening a jar and a patient reading a short letter she just wrote to her rheumatologist about how her pain while rubbing her aching hand. I think they are getting the message that their advertising has been offensive to most established RA patients. I know that I wasn’t very confident in trying some of the biologics I was put on because of the false promise advertisers pledged. In fact, I think I may have went through a lot of biological agents because I had a false expectation of what they could do. I just wanted the pain to stop. Sometimes biological agents don’t stop the pain, but they do slow the disease an address inflammation and stiffness. I personally think the pain needs to be better addressed before hoping from one biological agent to another if the ESR and CRP blood levels show improvement. For some very lucky people, biological agents are their brass ring but it’s more rare than you think.

What is lacking in magazines are the true stories of people who suffer greatly with disease. Most magazine articles are upbeat and offer hope to RA patients. Especially those that are free at the doctors office that are basically produced by pharmaceutical companies. Several articles about RA depict photos of RA sufferers being actively engaged in dancing, bicycling, and jogging. There are those with mild to moderate disease that can still do these things. I only mention this because it made me feel like something more was wrong with me when I was newly diagnosed. I quickly went from a mild to moderate form of sero-negative RA to moderate to severe S-RA in a matter of 3 1/2 years.  There was no biking for me. I struggled just to get out of bed and go to work and eventually lost that battle and had to file for disability.

When I compared my situation to that of those people in magazine ads and articles about RA it made me feel like I’d failed in some way. Finding other patients with RA was a life line for me. Not only did I find out that I wasn’t different, I shared many of the same signs and symptoms they did. I felt validated and it gave me the knowledge to be able to communicate more effectively with my physician. Don’t use advertising and articles about RA as a measuring stick for your disease. Talk individuals that have RA either through local support groups or social media for support. Seeking other RA patients will give you a more realistic picture of the disease and will help you feel less alone, especially when advertising, some articles about RA, and even your health care practitioner may cause you to feel that you are just a whiner, or that you are doing something wrong because you can’t do what is depicted in ads or recommended by your healthcare provider, or that your response to the drug isn’t ideal per the pharmaceutical literature.  You know how your body feels. Trust that.

Social Isolation & RA

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Another elephant in the room when discussing RA besides the intense pain is the eventual social isolation that the unpredictability of this disease causes. No one talks about this except those of us who have RA then when only share with other patients with whom we have a rapport because it can sound like whining to those in our lives who are not ill.

Having been a nurse for 16 years and use to dealing with the public on a daily basis I was not prepared for social changes I was experiencing. First, I felt challenged in my reliability to help fellow nurses on the job.  For example, one day I might have the hand and shoulder strength to help a colleague reposition a patient in bed or to a wheel chair and the next day I couldn’t do it. Rather than risk injuring a patient in pulling or repositioning, I would confess that my RA was acting up that day and I didn’t have the ability to safely move a patient. In an era where most hospitals short staff nurses, every nurse had to be 100%. I felt like I was letting down my team. This pattern just continued as I changed jobs three times in a year trying to accommodate my disability which was so out of character considering I’d always worked at a job five years or more before moving on in the past. Finally, in September 2011 I filed for disability.

I’ve always been someone who was reliable and dependable. I was always the go-to person in any job I ever worked. I was always willing to help others and I found this disease was taking all those good qualities I had away from me until I was a shell of myself I didn’t really know anymore. I was in pain, moody, angry, and anything but dependable. I couldn’t (and still can’t) make a commitment to any future event because I don’t know if I’ll be able to literally get out of bed on the day I’ve committed. I’ve grown weary of letting people down. I have to preface every calendar commitment with, “If I can,” vs. “I’ll be there”.  After a few of those responses and no-shows, invitations stop coming. Gradually you find yourself spending more and more time alone.  After filing for disability, I felt like I just fell off the face of the earth. I was having intense pain and was so depressed. After days on end of no human contact the walls start closing in. Most days the only live human voice I heard was that of my Mother over the phone. To further complicate things, living on a disability income is a challenge in budgeting. The money is not there to go shopping, out to eat, and to the movies on a regular basis which further socially isolates one. Who wants to go shopping with a girl friend who doesn’t buy anything or doesn’t want to go out of town because she can’t afford the gas? Living on a disability income makes one choose between medication and food. All extras are out of the question. If it weren’t for my family helping me with food and medication costs I couldn’t make ends meet. I’m a drag. I feel that no one really wants to know what my day to day struggle is like. I found that people began to avoid me. I once was told I had a joyful spirit and that people loved to be around me because I was always smiling. It was a difficult adjustment to figure out just where I fit in society.

I really didn’t say anything about this social isolation I was experiencing, the depression, and the feelings of failing others because I figured it something I was experiencing because I’m single and live alone. It wasn’t until I was in a RA online group in which one of the participants was having a complete, boo-hoo meltdown because her husband had screamed at her because she could not attend a family reunion. He accused her of just being difficult and avoiding life by wanting to lie on the couch all weekend. As she poured out her heart to our online group she told us that she couldn’t go to her children’s sporting events, that she felt like a bad wife and a bad mom. As we began to have an open chat about it,  I realized that these feelings I was having were universal among RA patients and that actually some of those who are responsible for a family have it even worse than I did because they lose their friends and then feel like their own spouses and children turn against them in frustration because they don’t understand the “wishy-washy-ness” of disease. Logic would say if you can do a task today you should be able to do it tomorrow, but that rule flies out the window when dealing with RA. You just don’t know how you are going to be until you get up in the morning and then by afternoon things can change. This disease literally robs us of our lives. So, if you are feeling this way please know that you are not alone. I’d urge you to seek other RA patients for support. You can check with arthritis.org to see if there is an actual group that meets in your area or you can search for the multiple online sources like http://www.rawarrior.com which is Kelly Young’s blog or join her webpage on Face Book. There are several social media sites for patients to join together.

Now that I’ve lived with disability for some time, I’ve learned to adapt somewhat. Now that the chronic pain is under control,  life looks a lot better. I still can’t make a commitment to social events or outings with friends or keep an immaculate house, but it’s not all been bad. There have been some positive things in my life since becoming disabled due to RA.

  • I have a best friend with RA. I met one of the most endearing of women during my struggle who also has S-RA. I can share my day-to-day struggles with her and laugh about our circumstances. She and I communicate daily online. We are both Christian women and share many similarities in our lives. We have become the best of friends and I can’t imagine going through this disease without her. She get’s it. We all need at least one person in our lives who fully understands what it’s like to live with RA. For many of us the go-to person is not a member of our families. That’s not to say that family isn’t supportive, but they don’t have the understanding that another person dealing with this disease has. Ask your rheumatologist if there is a patient support group in your area at your next visit or reach out and try the resources I’ve mentioned above.
  • I’ve also deepened my relationship with God. I have no doubt without His grace and mercy I’d have not made it through the worse of this disease. In many ways I consider my disability my thorn in the flesh as the Apostle, Paul described in his writings in the New Testament of the Bible. Like Paul, my thorn (S-RA) keeps me humble and grounded in my reliance upon the Lord. God has never failed to see me through the storms in my life. I know that I’d still be living the rat race had RA not slowed me down and brought me to my knees in prayer.
  • I got a fur baby. Living alone with chronic illness is so isolating. I’d find myself being so lonely. This past April, I adopted a little black and white 3-year-old shorkie (half yorkie, half shih tzu) from a shelter. Her owners surrendered her because they couldn’t take care of her. I fell in love with her at first sight. At first I was nervous wondering if I could care for a pet. I can’t take care of me! I have to rely on my family to help with housekeeping chores, for goodness sake! I will tell you that having Gracie in my life has been like magic. I will do for her what I would not do for myself. She is a reason to get out of bed in the morning because I need to fill her water and food dish. She keeps me company all day and she is just pure love. She even has me walking a 1/2 a block a day on the paved road in front of my house; something I wouldn’t have done on my own because I was so depressed and didn’t want to risk hurting myself. I would urge anyone living alone with chronic illness to try adopting a pet. I have more joy and less sadness now that Gracie brightens my days.

Social isolation is a huge part of RA, but you can find ways to cope with the inability to make commitments and feelings of failing or letting others down. My advise is to be honest about what you can and can’t do. If you commit to a date and can’t make it because of a flare, call as soon as you can and explain the circumstance rather than making an excuse. I’ve learned to say, “please ask me again sometime,” when I have to decline.  Also, try to keep the lines of communication open with your family. It’s not easy for them to accept the changes in you. They may not understand every aspect of your disease, but unlike a friend or acquaintance they offer more support and a little communication goes a long way to understanding. Because so much is unknown about RA among the general public, we patients often have to educate those closest to us.  It is taxing to try to tell everyone about RA when acquaintances really just want to hear, “I’m fine” in answer to “How are you?”. Save your energy on those who really care. The reality of having this disease is it separates those who really care about you from the fair weather friends. Don’t limit yourself if you can from social settings. Make new friends in the RA community. Take up a hobby that connects you to others. Do something you never thought you’d be able to do and challenge yourself. Lastly, I’d like to encourage you to let God in. God didn’t make you sick but he can help you through it if you’ll ask. You might be amazed how far a little trust in our Lord can go! 🙂

Tips on Changing Rheumatologists – Keeping a Medical Record

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I’ve seen a new Rheumatologist since May 2013.  I have to confess that I left my new patient appointment in tears because I felt that I wasn’t heard, that what I wanted to say wasn’t important as long as the medical assistant and doctor got the data they needed to build my electronic medical record. I was entering my fourth year of living with S-RA (sero-negative rheumatoid arthritis) and she wanted to start all over by diagnosing me. I very nearly changed doctors after that first appointment, but thank God I calmed down and gave her another chance. The next appointment went much better where she actually sat down with me and we talked. I told her my concerns and shared with her that I didn’t want to go back to square one and why. She actually understood my fears and concerns and spoke to me about them, but she also told me that rheumatology is such a gray area of medicine where the doctor has to trust in what the patient is telling them while also finding clinical proof to back up the symptoms the patient experiences. This is when I realized that I had not done my part in this transition. I needed my complete medical record.

You might be asking why I needed my complete medical record and why the new rheumatologist just didn’t request a copy of my file at my former rheumatologist’s office. This may have been the practice in the days of our mothers and grandmothers but that is not so in this modern age of medicine. Physician offices run on a skeleton staff and there isn’t a staff person who can take on the job of requesting medical records and making sure that they are obtained then entered into the electronic medical record of the patient. Also, many offices now bill the patient for the acquisition of medical records because of the cost of printing them or putting them on CD. It’s become much easier and much more profitable for the physician’s office to repeat your diagnostic tests and bill your insurance company for the repeats than to go through all the steps of getting your medical record from a colleague.

Before my third appointment with the new rheumatologist, I acquired my complete rheumatology file from the former physician for $30. The record arrived on a CD and I spent an additional $20 on paper and ink to be able to print a 126 page medical file. Having been a nurse for 16 years, I’ve learned how doctors like their information presented in a chart, so I obtained a large 3 ring binder and I divided it with color tabbed paper dividers in the following sections: Progress Notes, Medications, Lab Results, Radiology, Other. In a medical record, the most recent data is on top with the oldest data on bottom. For instance, when placing a three page progress note in the record, I put page 1, 2, then 3 in the binder with page 3 on top. I know it sounds backwards, but this is the way doctors are accustomed to seeing data within the medical record. When you place your lab or radiology reports in the binder, the oldest are to the back with the most recent on the top.

I now know I need to be the keeper of my medical records from all my physicians. It’s easier to ask for these records as you seek service and cheaper. Generally, the office will not charge you for copies of records as you incur the service vs. having to pay the fee for a bulk medical record that I had to pay as mentioned above. It doesn’t take any time for them to print your progress notes and diagnostic test results from an previous appointment for you at check out. Several of my physicians allow patient access to medical records through a patient portal where I can go online at my leisure and look at my file and print my diagnostic paper work. You really need to read your progress or office notes to make sure the information you are telling your physician is recorded accurately in your medical record. If there are any discrepancies you can discuss them with your physician and correct them. This can be very important if you may need to file for disability in the future.

Always have a current list of your medications. I can’t tell you the importance of also keeping a master schedule of your medications that includes: the date you started the medication, the name of the medication, the strength of the dose and the unit of measure of that dose, how many times of day you take it, and the date the medication is discontinued. This new rheumatologist wanted the date I started Enbrel 3 years ago and the date I discontinued it and I couldn’t tell her. A lot of patients are good about keeping a list of their current medications, but rarely do we write down the date we start a medication and the date a medication is discontinued and why. If it is easier you may wish to keep a master list of all the meds you started and stopped and a second list of your current medications.

You can use the “other” tab for anything you wish, but this is where I placed the statements I’d received from my insurance company. Whenever I get a statement of what the insurance company has paid I staple it to the actual bill for that visit and I can tell you that has saved me from overpaying numerous times. That may sound tedious, but when you are on tight budget it makes a big difference. I’m still overpaid from an error on my initial new patient visit because they “guesstimated” my bill incorrectly. Had I not had paper proof from the insurance company of what was charged, what they paid, and what I might owe I’d been expected to pay 20% of estimated charges for visits 2 & 3. If you have a physician that doesn’t try to collect up front before the visit expect that to change as Obama Care goes into effect Jan 2014. With more Americans than ever having health insurance which will be mandatory, the physician is not going be stuck with an unpaid bill for services when the newly insured defaults on their premiums and the insurance company refuses to make payment to the physician.

I knew my third patient visit to this new rheumatologist was going to be the make or break visit where I’d decide to continue under her care or fire her. I had my organized medical record in hand. I also had pulled out the start and stop date of every biological or disease modifying agent I’d been on since 2009 and graphed my CRP and ESR so she could see what drug I was on when the levels increased or decreased. From my complete medical record she was able to see that I have not had any success with biological agents since the get-go. Had I not had this data readily available to her in a format she recognized she would have started the trial and error of going back and prescribing the same drugs to me again so she could monitor the effects and I would have been frustrated and left her care. In fact she had discussed starting Humira again which was biologic number 2 out of 4. As it was, we came to some mutual decisions about my diagnosis, prognosis and care plan. We are now moving forward instead of backwards. She and her medical assistant told me how much the appreciated my medical record. There is no telling how much money in repeat exams having this data saved me! I allowed them to copy sections of my medical record for their files, but I retained my copy in the binder.

I can’t help but wonder how many patients who faced similar feelings of not being heard or that their symptoms were dismissed because there wasn’t a physical finding on that initial visit walked away in tears like I did and went on to another doctor? I very nearly did. I prayed a lot about the decision to continue with this particular doctor and I just felt I needed to get over being offended and meet her half may. Now that I’ve done so and put our rocky start behind me, we have the start of a trusting physician/patient relationship.