Changing Course


I was diagnosed with RA in mid-2008. Like many people, my rheumatologist began my treatment plan with methotrexate along with an NSAID and pain relievers. In the six years since then, I’ve moved forward to my sixth biologic supplemented with a disease-modifying anti-arthritis drug (DMARD) and an NSAID. The good news is that I’m doing well on this latest cocktail and I am hopeful that drug changes are behind me for a while.

But how do you know when it’s time to change?

Read more at RheumatoidArthritis.net: http://rheumatoidarthritis.net/living/changing-course/

And a jab to the right …

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I’ve related in the past how, when growing up, I swore I’d never be a drug addict because I could never stand to give myself an injection. Like most kids, I hated needles.syringe

As an adult you learn to deal with it, although it seems that most adults don’t have the myriad of injections that come with being a kid — all the vaccinations, antibiotics, etc. Other than the yearly flu shot and the occasional antibiotic there’s not a lot of occasion to get jabbed. (I love that expression. In England, they call injections “jabs” as in, “Get your yearly flu jab.”)

That is, of course, unless you have a chronic disease.

While I’ll certainly concede that there are conditions (such as diabetes with insulin injections) that require more pokes than RA, I must say that with RA, there are days where you feel like a pincushion. I could have sworn that last week was National Jab Carla Week. I’m sure there must have been parades and sales at large department stores to celebrate. Or at least fireworks and cake.

On Monday I went for a checkup with my PCP. Of course, he wanted labs and it seems like no one can hit a vein the first time, so on the third try, the lab technician finally drew blood. I’m currently taking a baby aspirin a day, so of course I’m bruised all over the “poke” sites as well as bruised from the tourniquet. Then that afternoon, I went to see my shoulder surgeon’s PA. My right shoulder (the one that has had two rotator cuff surgeries) has been bothering me. It’s been doing pretty well since last December when they did a steroid injection, but the benefits have worn off. So of course, we did another steroid injection, and it was in three different locations in the shoulder. So three more jabs.

Then two days later I had to go in for a screening MRI. What I didn’t realize is that my doctor ordered it with contrast, so I had to have an IV. The only thing harder than getting blood out of me is putting fluids into me. Amazingly, however, the technician hit the vein in the back of my hand on the first try. I don’t remember that ever happening.

And I’m almost due for my every-two-months lab work for my rheumatologist. Sigh.

I guess the good news is that I have moved from the injectable biologics (Humira, Simponi, Enbrel, Orencia, Cimzia) to the Xeljanz which is a pill. At least I’ve removed one jab from my life.

I hope whatever jabs that life has in store for you are filled with benefits. Thanks for checking in.

PS: Yesterday was the one-year anniversary of my total knee replacement (TKR). I’ve updated the TKR pics page with the one-year progress shot.

Just to be clear

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So this month marks my sixth anniversary of writing this blog. Who knew? I’ve had marriages (plural) that haven’t lasted as long as this blog.

That means that last month was the sixth anniversary of my RA diagnosis. (And next month will be the sixth anniversary of my hip replacement. But who’s counting?)

Right after I was diagnosed I found Rheumatoid Arthritis Guy, super hero in the guise of someone with RA. His blog helps me, as he does countless others, navigate the uncertain waters we all face with this disease. Recently he had a wonderful post entitled, “I thank my rheumatoid arthritis for”, which chronicled the (perhaps) unexpected blessings and lessons learned from having a chronic disease.

I get it. Being mentally positive has shown to also be physically positive. There is an almost irresistible desire to take those darned lemons and by gosh make them into luscious, wonderful lemonade.

That’s not me.

I honestly can’t complain. I am very thankful that medical science has progressed to the point that there are advancements in RA management where patients can look forward with anticipation to a good life instead of dread of disability. And I am even more thankful that I can afford good health insurance to pay for those treatments and live in an area with a wealth of top-notch medical professionals and facilities. These are blessings that so many people don’t have.

But these are strengths and victories in battles I don’t want. Just to be clear, I hate having RA. I resent every single test, X-ray, MRI, prescription, and procedure I’ve had and the tens of thousands of dollars I’ve had to invest in my health due to this condition. I hate being screened at airport security because of the titanium in my hip and my shoulders and my knee and my back. It drives me crazy to plan something only to have RA raise its ugly head and make it impossible.

It is nice to slow down and smell the roses, even if it is because of RA. But I think it’s even better to smell the roses AND go running through the field chasing Frisbees flashing in the sun. I am lucky that I am self-employed and can make a reasonable living working what is essentially part-time. But I would much rather have a demanding, challenging career that I love and that makes me WANT to work those 14-hour days for weeks at a time – something that I could not physically do now even if I had the opportunity.

RA has brought many new experiences and people into my life – some of them, including the many incredible people I’ve been in contact with through this blog, have been amazing. But I will never forgive RA for the many things it’s stolen from my life in return.

I will fight RA every day of my life. And while common wisdom (and even good sense) tells me that I probably won’t ever beat it, I’ll be darned if I’ll give up trying.

Hoping that your battles against RA are victorious. Thanks for checking in.

Just add water …

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So, with the improvement in my RA symptoms thanks to Xeljanz and then the diagnosis of atherosclerosis I’ve (once again) made the commitment to get more exercise. Frankly, there isn’t anything that’s wrong with me that wouldn’t be improved by exercise. I got off to a slow start due to the bronchitis and then a business trip to DC. I returned from the trip on a Thursday evening and on Friday morning, I got up and walked.

I have some wonderful walking shoes (Skechers Go Walk 2) but my knees, feet and ankles got really tired and sore. The next morning they were really, really sore. The obvious solution is to get the weight off my joints but still get my exercise, so I’ve moved my workouts to the pool. The health/fitness facility I use has an Olympic-sized pool that is kept to “arthritis” warmth and always has one or two lanes dedicated to walkers. My goal is at least three times a week, which I made last week (go me!) and have a good start on this week.

I’ve added more water to my diet as well. I’ve been increasingly concerned about all the information linking diet sodas to obesity. I don’t drink a lot of diet sodas — usually one in the morning for my “breakfast” drink. But then I’d switch to Diet Arizona Green Tea which I’d drink continually through the day until bedtime. That is an incredible amount of artificial sweetener to be pouring into my body on a daily basis. So starting last week I switched my morning soda for one cup of black coffee and water for the green tea. When I was at my healthiest this was my daily beverage routine, so I am hopeful that it will once again prove beneficial.

I can’t tell that I feel much different, but between the workouts and losing the artificial sweeteners, I lost two pounds last week (go me, again!).

As an update on the medication front, I haven’t been doing well. I was doing my happy dance about feeling so good on Xeljanz. My rheumy and I agreed that we could try cutting back the leflunomide/Arava back from 20mg/day to 10mg/day. I also had dropped the 7.5mg of Mobic/meloxicam that I’d been taking since switching to Xeljanz.

At first it was swollen, sore sausage fingers in the morning. Then my feet started complaining. Then it extended past morning. So after three weeks I added back in the Mobic. That didn’t have much impact so, this (the fourth) week I’ve gone back to the 20mg of leflunomide and (temporarily) the Mobic. The dosage and combination worked well earlier so I am hopeful that things will return to the “good” zone again. Just to help calm things down, I’m also doing a small Prednisone taper.

So that’s what’s up in my world these days. I hope whatever additions you’re making to your life are good ones. Thanks for checking in.

News, news, news, and more news

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I have been traveling on business lately. The good news is that both RA and my bout of bronchitis have been quiet which is amazing. Usually the combination of airplanes, dragging baggage, bad diet, strange beds, and long hours is enough to throw me into a flare and/or aggravate any other health issues I have lurking around.

The bad news is that there has been a lot going on in the field of rheumatology and immune-related diseases and I haven’t had a chance to either keep up or post anything here.

Of major interest was the 2014 EULAR conference earlier this month. EULAR (www.eular.org) standing for European League Against Rheumatism. (I’d be shocked if there was a league FOR rheumatism, but still …). There were several major papers that were presented, bringing hope for new treatments, better diagnosis, and more insight for rheumatoid arthritis and similar conditions. Cliff Notes versions of these are available (among other sources) here: Medscape.com. Full abstracts of the presentations are available at the EULAR site.

Here’s a sample list of topics (with links to the Medscape article — you must have a free account):

The RA drug, Xeljanz, has also been making some very interesting news. First, it was used to reverse the baldness of a 25-year old man who lost his hair due to Alopecia. He was not only completely bald on his head, but had lost all body hair. After treatment, he now has a full head of hair along with eyebrows, eye lashes, and (I’m assuming) hair elsewhere on his torso. Alopecia is an auto-immune disease where the body attacks hair follicles. I don’t think there is yet much hope for standard male-pattern baldness, but this is a major step for the millions of people who have lost some or all of their hair to the disease.

Based on the results of a two-year study, Xeljanz has also been shown to be more effective for RA than methotrexate as a monotherapy (single drug therapy). On one hand, this is great news for the many people who cannot tolerate the side effects of methotrexate. On the other hand, methotrexate is very cost-effective and Xeljanz costs more than $2000/month. My insurance company would not cover the cost of Xeljanz until I had provided information that I’d completed the “step therapy”, i.e., taken other drugs first that didn’t work (including methotrexate and Enbrel).

The amount of information about RA and the research that is being done is wonderfully encouraging. Some of these advancements won’t come to fruition for at least a few years, but all of them describe a brighter future for RA patients than we’ve ever had before.

I hope that whatever news is in your life is all good. Thanks for checking in.

B is for Bronchitis and “Bye-Bye” Blogspot

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I reported in my last post that I had received the test report that showed carotid stenosis. I actually got the report because I had managed to contract the crud my husband had and wound up going to the doctor and asked for it during my office visit. I wasn’t too worried about the crud at first because I was on antibiotics after my dental surgery, but when I ran out of those, the crud got worse and migrated to my chest. They first thought it was pneumonia but we’ve settled on severe bronchitis after the X-ray came back okay. After two doctor’s visits, two antibiotic shots, a full round of oral antibiotics, two breathing treatments, and two different inhalers I’m finally starting to feel human again.

I mentioned to my doctor’s PA that because of my compromised immune system, that it might just take a bit longer for me to get well. She nodded then said something very interesting. She said that also because of my immune system, my body may not respond to illness like other people’s. For example, she said, I might not run a fever when I have an infection.

One — I had never considered those types of ramifications before and, two, it’s wonderful to have a doctor and staff who DO understand a lot about those of us with RA and are on drugs that impact our immune system. My previous doctor (may he rest in peace) sort of dealt with RA like it was a separate situation which was under my rheumatologist’s care. I didn’t think much about it at the time, but now that I have a doctor who takes my RA situation into account with the other aspects of my healthcare, it’s made a world of difference.

On another topic, I’ve drawn a line in the sand with BlogSpot. When I started my blog (nearly six years ago now), I had a friend who had used WordPress, otherwise I could have just as easily used BlogSpot or one of the other blog hosting sites, so I have no preconceived notions. As time went on and I discovered other RA-related bloggers out there, I found several I follow who do use BlogSpot. It has always irked me that to post a comment, BlogSpot required you to log in (usually with your WordPress or other open ID) as well as do those “type these letters and prove you’re not a robot” things. Many times the verification wouldn’t work and I’d just give up. One of my favorite BlogSpot bloggers, Cateepoo, recently posted a wonderful post and I wanted to post a comment indicating how it resonated with me and how much I enjoyed it. Her BlogSpot site now requires you to log in with a Google+ account and opens a window for you to create one if you don’t have one (which I don’t). I’m not going to create a separate internet identity just so I can leave comments. I already have more internet doppelgangers than I’d like. IMHO, blogs are for openness in information, building community, and including people. Creating barriers to entry such as these is contrary to those objectives. And while I will continue to monitor and enjoy “The Life and Adventures of Cateepoo”, I won’t be commenting on it or other BlogSpot-hosted sites.

I hope that if you have a “B” in your life today, it stands for bountiful amounts of health and happiness. Thanks for checking in.

A is for Atherosclerosis

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The exact diagnosis from the doctor’s note is carotid stenosis. “Carotid” for the carotid arteries — the large ones in your neck that carry oxygenated blood to your brain, and “stenosis” meaning narrowing.

I reported in an earlier post that I’d had a Doppler test on my carotid arteries and the technician heartily assured me that he’d tell me if everything went okay, and then he didn’t tell me that.

I got the test results back the other day and they did show a narrowing or plaque build up, but no “concerning” blockages. And while it’s showing up in my carotid arteries, that’s just an easy place to do the test. This generally means I have plaque build up (or atherosclerosis, a.k.a., hardening of the arteries) throughout my body. Usually they find atherosclerosis happens in the cardiac/heart arteries before it shows up in the carotid. (So I have that to worry about and now have something to discuss with my cardiologist the next time I see him.) It can also show up in places such as your kidneys and liver and cause peripheral artery disease which can cause issues with your arms, legs, and pelvis.

Coronary heart disease (CHD), where the plaque builds up in the arteries of the heart, is the number 1 killer of men and women in the United States, as CHD can lead to heart attack.

Other fun things include stroke and kidney disease or failure. There is also a potential link between atherosclerosis and Alzheimer’s.

There are a lot of risk factors for atherosclerosis including the usual ones of diet and exercise as well as diabetes, hypertension, and family health history risks. Interestingly, one of the emerging factors is inflammation as indicated by elevated CRP levels. Sound familiar? Yes, those same CRP tests that those of us with RA routinely get to see if our inflammation is under control.

So starting immediately the doctor has added low-dose aspirin to my mix of prescriptions and supplements. Aspirin doesn’t do anything about the plaque, but it does thin the blood so it can more easily move through the narrowed arteries. Doing something about the plaque is up to me and making better choices about what I eat and the exercise I get. I am also hopeful that now that Xeljanz seems to be improving my RA symptoms, that it’s also helping improve my overall inflammation.

“A” also stands for “attitude” and I am hopeful that you are able to face whatever your life holds today with a healthy, happy one. Thanks for checking in.

Victories

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Most health issues are like short skirmishes. Skinned knees, a 48-hour bug, a cold that lasts for a week, the flu that lasts for two weeks, gall bladder issues that are solved through surgery and recovery. Some skirmishes you win on your own. Others take WMDs (weapons of medical destruction) and armies of healthcare providers.

Chronic illnesses are not like that. They are long-lasting sieges. They are the 100-years War where you barricade yourself against the assault of the disease throwing out your best defenses, beating back the enemy as much as possible. With RA, you hope for an armistice or a truce SiegeTower_6_30_06when remission occurs, hopefully indefinitely. But still, the damage to your battlements is there.

And because there is no final victory over RA (yet), it is important to celebrate the battles that you do win.

So this is me doing a celebratory dance.

I’ve mentioned a couple of times that Xeljanz seems to be working and, to me, that’s more than a victory, it’s a miracle. I’ve been on numerous drugs but, until now, the first thing I did in the morning when I woke up was try to decide what hurt most. Now I wake up and mentally try to organize everything I have to do in the day. Stiffness and pain are not first or foremost in my mind.

Xeljanz is not a cure and it’s early in the treatment plan. There are a lot of things that could go sidewise. But I’m not there yet. Now I get to wake up and do a happy dance and blow raspberries at RA.

I hope whatever your day brings, there’s a reason to celebrate a victory. Thanks for checking in.

Updates

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I’ll start with the most recent news first.

Yesterday I went to the oral surgeon for the first step in getting the replacement implant for the tooth I’d broken and subsequently had removed last January. The jaw has to have time to rebuild the bone where the root of the tooth was before they can start the implant procedure. The first step is putting a post into the jaw to hold the crown that will eventually be in place. alftoothacheThis is what I had done yesterday and it takes several months for the bone to heal firmly around the post before the next steps of putting an abutment (the part that extends beyond the gum line that the crown holds onto) and the crown. Since the location of my missing tooth is directly below a sinus, the oral surgeon inserted a bit of additional bone below the sinus and above the implant for extra protection. I opted for general anesthesia rather than local for several reasons and, other than the anticipated multiple pokes (5), to get the IV started, all went well. When I woke up, they had wrapped a band around my head that held an ice pack to help with any swelling. I was reminded of Alfalfa from the old “Our Gang” show. I am doing really well. I’ve had no pain and spent most of yesterday sleeping off the anesthesia. Just as a matter of practice, after any kind of surgery, I always take the pain medication “on schedule” the first day, although I didn’t really feel like I needed it. Today, I’ll definitely switch to the “as needed” approach. I go back in a week for another X-Ray and follow-up visit, then in three to four months we’ll take the second step of inserting the abutment into the post. A couple of weeks after that, I’ll get the final crown and it will be as though the tooth was never gone.

Before that, I visited my orthopedic surgeon for a follow up on my knee replacement. While on vacation, my knee started making a definite “clunking” noise. As this was new and it has been 10 months since the surgery (close enough to my one-year evaluation to count), I decided to get it checked out. Everything looks, as my doctor says, “perfect”. As the knee continues to heal, which can take 18 months to two years, the muscles continue to relax and swelling recedes. This makes the area around the new knee a bit looser and, as such, the components move more freely and can make noise, particularly when the knee is in a twisting or turning motion. He also checked my hip replacement which also looks great so I’m good to go for another two years on both of those. The only fly in the ointment (not actually as big as a fly, more like a gnat or a noseeum) is that my other hip is showing some degeneration and narrowing of the cartilage and more arthritis. Not headed for a replacement there quite yet, but it is changing.

The really good news is that I had my rheumatologist follow up and the Xeljanz seems to be working. My labs look good and most days I actually feel pretty good. I’m currently still on 7.5 mg of Mobic and 20 mg of Arava (leflunomide). I’m dropping off the Mobic starting next week. I was on 15 mg per day, but as Xeljanz can have pretty severe gastric consequences, I cut it in half and, with my rheumy’s blessing, am going to drop it off altogether. I was on it mainly to help with the transition to the new drug. In addition, I’m going to move from 20 mg of Arava to 10 mg with the goal of dropping off it altogether by next spring. My one fear is that I’ll build up a resistance to Xeljanz like I did the TNF inhibitors. But so far, so good. One step at a time.

Finally, there is the unknown. The same day I saw my rheumatologist, my PCP ordered a Doppler scan of my carotid arteries. I have cholesterol and blood pressure problems and as I generally eat the same diet as my husband who has triple-bypass and have the additional risk factor of inflammation from RA. It’s probably a good idea to check for plaque build up. The Doppler scan is very similar to a sonogram where they put a gel on your skin and move a wand/device over it. I really wasn’t expecting anything, but I have to say that now I’m a bit concerned. The technician said that I would probably hear from my doctor in a few days, but that he would tell me if everything was okay (which he shouldn’t have said). At the end of the test, he DIDN’T tell me everything was okay, just that my doctor would get back to me. I haven’t heard anything yet. I’ve been trying to be patient because of the recent Memorial Day holiday and then being out for oral surgery, but I am going to start calling next week if I don’t get some information soon.

So that’s my life lately. Lots of stuff going on but RA has generally been quiet due to (fingers crossed) the new drug routine. I hope whatever is going on in your life brings you a smile. Thanks for checking in.

 

“RALLY” ’round; thank you Healthline

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I must have checked a box somewhere, sometime otherwise I wouldn’t have gotten the letter. You know those letters that start out “You previously contacted us and requested information …” This one is from Bristol-Myers Squibb (BMS) and even though I usually toss this kind of letter directly into File 13 (aka, the wastebasket), this one has piqued my curiosity.

BMS is introducing a data collection research projected called RALLY. It’s a long-term study evaluating the impact of RA on the quality of life and treatment experiences of people with RA and rheumatic conditions. There’s not much effort. About twice a year fill out a questionnaire that takes 30 to 60 minutes. Their recruitment goal is 20,000 participants.

On one hand, this is the kind of thing that I support because I believe that knowledge is power and the more we understand about RA, the closer we come to finding better treatments and, eventually, a cure. On the other hand, there is a certain qualm about providing so much information that goes into a database. (This comment from me — the woman who has given her fingerprints and retinal scans to the NSA to get through airport security and immigration more quickly …. ) I haven’t looked at the questionnaire yet but, among other things, the letter says they might contact my doctor to verify my diagnosis. I get it, they want valid information.

If you would like to learn more and/or participate there are two websites. For frequently asked questions, go to http://www.arthritis-research.org/participate/frequently-asked-questions. If you want to participate, you can either call 1-800-323-5871 or visit the RALLY website at www.ndbrally.org and click on “NDB & RAlly Participant’s Entry.”285x285_Best_RA_Blogs_2014_1_0

In other news, I’m proud (and somewhat humbled — again) to have been notified that Carla’s Corner has been named one of Healthline’s best Rheumatoid Arthritis blogs. Many of my favorite bloggers have also made the list. Check them out at http://www.healthline.com/health-slideshow/best-rheumatoid-arthritis-blogs. If you aren’t already familiar with the terrific people who write these blogs and share their stories, I think you’ll find it well worth your time and effort. There are some extraordinarily inspiring and educational posts out there.

This week is filled with doctor’s visits. I should have lots to report by the end of the week (hopefully all good!). Thanks for checking in.

 

 

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