More Whining

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I don’t know whether I’m mad, having a pity party, depressed, or all three. Probably all three.

It’s been a rough few weeks. I’ve been in a lot of pain since the Xeljanz stopped working for me and a couple of weeks ago (as noted in an earlier post) my rheumatologist and I made the decision to switch to Remicade, which is an infused biologic. After being on Xeljanz which was simply one small white tablet twice a day, considering an IV medication was not very appealing. But, I’m running out of options and when my hands are so sore it hurts when my husband holds them, I have to do something. There are some days when it even hurts to type.

I was told two weeks ago at my rheumatologist’s appointment that the paperwork would go into the infusion provider that day and they would handle getting the insurance approvals and scheduling. When I hadn’t heard anything for a week, I called my rheumatologist’s office back to check in. It seems the nurse (who is new to the practice) hadn’t put the orders into the computer to be sent to the infusion company. I was promised they’d go out that day.

Another week goes by. Still in pain. Still have swollen joints. Still haven’t heard from the infusion company. So I called my rheumatologist’s office again. They gave me the number of the infusion company, which I called and got voice mail. I waited 24 hours then called again. I finally got a call back from my “account manager” later that afternoon. She told me she hadn’t heard of me until I had called and left a message. She had called my rheumatologist office and found that my paperwork was still sitting on the nurse’s desk and hadn’t been transmitted to her. However, she now had my paperwork and was starting to work on it immediately.

Fortunately she called me back later that afternoon and told me all the insurance hurdles had been cleared and that I could schedule my first infusion at the next “infusion day” at the doctor’s office — which is yet another week away. So three weeks after the original prescription, I’m finally getting scheduled for something that should have taken a couple of hours to resolve.

I believe in being a proactive participant in my healthcare process, but I somehow think the line should be drawn on doing the nurse’s job for her. Next thing you know, I’ll be taking my own blood pressure (which is pretty high right now).

All this aggravation aside, I’m still not reconciled to this whole infusion thing. It’s been six years since my diagnosis and (three joint replacements, multiple knee arthroscopies, two rotator cuff surgeries and a spinal fusion surgery aside), I’ve pretty much ignored the fact that I have RA and gone about living my life. The minor aggravation of taking a pill every day or an injection a few times a month (at my convenience) didn’t really intrude on my daily activities.

But now I’m faced with a whole new perception of reality. This will probably change once I go through the first infusion, but right now I think about infusion patients and I think about patients who are really ill. They take really strong medicines that must be administered intravenously and be carefully monitored during the process. It takes hours and it must be done on a schedule convenient for the infusion provider. I no longer feel in control of the process.

And I will tell you that the thought of having an infusion every six weeks for the rest of my life is almost overwhelming. My friends have told me that they’re amazed that I’ve taken RA in stride. But this hurdle is going to take some time to get over.

Part of me just wants to give up other parts of my life and just focus on everything it takes to have RA — do the infusions, take the pain pills (which I don’t), acknowledge that daily exercise is a requirement not an elective — basically be a professional patient full time and make time for the rest of my life as I can.

The other part of me says this is stupid. I’m doing the Remicade to improve the quality of my life and that the method of delivery (infusion), while inconvenient, is nothing more than that — inconvenient. It’s not a prison sentence.

Sigh.

There’s really no point to this blog except, true to the title, more whining. Next week after the first infusion and (possibly) when I start feeling better, life will no doubt look brighter and I’ll be doing my happy dance once again.

I hope you have more brightness and less whining in your day. Thanks for checking in.

RA and herpes

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I don’t believe in coincidence. Karma, yes. Fate, yes. Coincidence, no.

This is especially true in medicine. If you are trapped for hours in an airplane full of hacking, sneezing passengers, it’s really not coincidence that you come down with a cold or the flu within a week. If you step outside in the spring or fall and start sneezing, it’s probably not a coincidence (it’s seasonal allergies). So when, in the midst of a major flare, I had a  weird rash show up near my already swollen and tender left elbow, I immediately assumed the outbreak was associated with the flare.

Read the rest of the article here: http://rheumatoidarthritis.net/living/ra-herpes/

Sometimes the news isn’t good

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If you’ve been following this blog recently you know that I’ve been doing a happy dance since I’ve been on Xeljanz. Two pills a day and it was like I didn’t have RA ever at all.

I had also been taking 20 mg of leflunomide daily and 7.5 mg of Mobic twice a day. After about six weeks on the drugs I was doing so well that we dropped the leflunomide to 10 mg and eliminated the Mobic. That lasted about a month. I started feeling worse as the month wore on — more pain, more swelling, more tender joints. Then I had a major flare. I did a prednisone taper and went back to the higher dosage of leflunomide and added back in the Mobic. I felt better while on the prednisone and for a few days afterward, then the pain, swelling, tenderness, and fatigue started creeping back in. I moved my regular check up with my rheumatologist earlier and met with her today.

The result is that I’m the first patient she’s had that has failed on Xeljanz. Obviously painful and swollen joints, especially in my wrists and hands, but other joints as well.

The plan is to switch to Remicade starting as soon as all the insurance red tape is sorted out. There will be an infusion every two weeks for three doses, then once every six weeks. My doctor explained that one of the positive things about Remicade is that while other biologics are regulated about the dosage, she is able to adjust the dosage of Remicade upward if the patient needs it. While she would start most patients on (for example) 4 mg per kg of body weight, she will probably start me on 6 mg as I have “failed” on previous TNF blockers (Enbrel, Humira, Simponi, Cimzia). Instead of the normal 8 weeks between infusions, she is recommending every six weeks.

Besides the obvious fact that I have “failed” yet another drug, there are other bad news aspects of this:

  • I am quickly running out of other options. There really aren’t a lot of other drugs to try if I don’t respond to Remicade. And I’ve failed at all other TNF blockers in the past so it makes me wonder if I will fail this one as well.
  • It only took a matter of a few weeks for me to quit responding to Xeljanz. I was on Humira for 18 months (my first biologic) before it quit working for me. I seem to be accelerating through drugs. Part of this may be due to a built-up tolerance to TNF blockers in general, but it is worrisome.
  • I have lousy veins. They can never hit a vein the first time to take blood and the last time I had an IV, they stuck me five times.
  • While I’m waiting on approval for the Remicade, I am on 10 mg of prednisone and pain killers. I think prednisone is a great weapon but it should be used wisely and sparingly. I really don’t want to be on it for long. And pain killers dull my thinking and make me lethargic. But right now, the pain is not something that I can ignore.

So I’ve gone from my happy dance to my pouty face. I hope that whatever news you have in your life today is positive. Thanks for checking in.

RheumatoidArthritis.net

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You may have noticed that my last two posts refer you to RheumatoidArthritis.net for the full post. I am thrilled to have been invited to be a contributor to the site which I greatly admire. I have found resources and other bloggers I enjoy through the site. Not everything I post is appropriate for their guidelines, so I will continue to have full posts exclusive to this site as well as those posts that get shared with the larger audience at RheumatoidArthritis.net.

As always, I appreciate your continued interest and great support. Thanks for checking in.

Traveling With Titanium

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I’ve often joked that when I die, they’re not going to bury me – they’ll turn me into a hardware store. I have an artificial hip, an artificial shoulder, and an artificial knee. Additionally, I have rods, screws, and spacers in my spine, screws in both shoulders, various vascular clips leftover from surgery, and the latest addition is a post implanted in my upper jaw getting ready for a new tooth. All this medical titanium works great to improve the quality of my life and/or my mobility. That is, with the exception of when I go through airport security.

Read the rest of the post here: http://rheumatoidarthritis.net/living/traveling-titanium/

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.

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