What do you do when you can’t?


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From One Big Happy comic strip, March 25, 2014.

From One Big Happy comic strip, March 25, 2014.

We’ve all been there. The day you have something important — or even not-so-important — to do is the day you flare. Or the day you’re especially suffering from fatigue. Or the day the side effects of the meds really start kicking in. Or just the day you feel so overwhelmed with dealing with the disease that it’s hard to deal with anything else.

Sometimes we just get up and go anyway, with varying results depending on how well we can actually function. Other times we (once again) beg off with some excuse or other, then wind up feeling guilty on top of feeling bad.

But that’s mainly the physical effects of RA. What about the mental outlook?

I’ve been paid a major compliment. I’ve been asked to submit a guest blog. No details here to spoil the surprise, but I was very pleased. I mainly do this blog for myself but as a wonderful consequence I’ve made some great friends and occasionally something about which I’ve written has resonated with other people dealing with similar situations. The fact that someone else wants me to contribute toward their efforts on education about this disease is, indeed, flattering.

The topics they are suggesting are all positive. I get it. With all the negative, scary information out there, it is truly helpful to know that real people have overcome challenges and have victories (however large or small) over the disease. I was especially taken by Pollyanna Penguin’s “Life in the Day” post where she contrasted her life today with when she was first diagnosed. Her life is certainly not perfect, but through treatment and her own determination (and wicked sense of humor), she’s doing better.

My problem is that mentally, right now, I’m not in a good place to do something positive. As posted earlier, the Cimzia hasn’t been working. The Arava and Mobic are “supplemental” so they’re not supposed to carry the main load of combatting the disease, so for some time now I’ve been without mainline treatment and it’s catching up to me. It’s scary because I can sit here and tell myself that this is what my future is like — constant pain, chronic fatigue.

My doctor has switched me to Xeljanz but, due to a mix-up getting my recent cholesterol labs to my doctor, I haven’t yet started on the drug. Now that I’ve (hopefully) gotten the lab situation straightened out, we still have to go through the insurance approval process and then it will take a minimum of weeks and possibly months before the Xeljanz provides any improvement. In the meantime, I’m like the boy in the cartoon — it’s really hard to get excited about getting out of bed in the morning.

I intend to do the guest blog. In my case, it’s a mind-over-matter situation. (If you don’t mind, it doesn’t matter.) And I do have plenty of positive things to provide the fodder for the piece, I just need to remind myself of them.

Until then, I hope whatever gets you out of bed in the morning is a good thing.

Thanks for checking in.








The X-Factor


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Those of you who are young enough to remember high school algebra know that “X” stands for “unknown”. And that’s kind of where I am right now — in unknown territory (not high school algebra class … except in those dreams where I haven’t studied for the test).

But first I want to say a sincere, “thank you” to all the support and encouragement I received from my earlier “Discouraged” post. That really meant a lot.

As reported earlier, I didn’t feel that Cimzia was working and had moved up my appointment with my rheumatologist. That appointment was yesterday.

Honestly, yesterday I felt so bad it was hard to get out of bed to go to the appointment, but at the same time, it’s good to go to the doctor when you’re actually exhibiting symptoms. She examined my poor swollen joints and asked when my last Cimzia injection was — which was only four days previously. (Cimzia is scheduled every two weeks, so it should have been in full force.) So she agreed that it wasn’t working. That was the easy part.

Finding the alternative was the hard part. We discussed Rituxan (rituximab) which has been shown to be helpful to patients (like me) who either didn’t respond or quit responding to TNF inhibitors. (My list includes Humira, Simponi, Enbrel, and Cimzia not to mention Orencia which is T-cell inhibitor.) I have some hesitation about Rituxan (along with everything else I haven’t tried) and major reservations about any infusion therapy because of my lousy veins. I really appreciate the time that Andrew gave me to discuss his personal experience with the drug. I didn’t say “no” but my rheumatologist is perceptive enough to understand when I hesitate. So the discussion turned to Xeljanz.

Thus the second “X Factor” for Xeljanz.5_mg_bottle_r_lr

Like any powerful drug there are benefits and downsides to it which I discussed in excruciating detail with my rheumatologist. Interestingly, she participated in the early clinical trials of the drug so she had pretty in-depth knowledge about the drug. Right now she has about a dozen other patients on Xeljanz. All of them had issues with TNF inhibitors and she indicating all of them are doing well on the new drug.

So that’s where we are. Xeljanz can raise cholesterol so you must have that checked before you can start on the drug. Fortunately I had labs done recently showing good numbers there. We’re in the midst of sorting out the insurance approval and getting the prescription set up.

In the meantime, I’m on prednisone to help calm things down (10 mg for two weeks followed by 5 mg for two more weeks) and I can already tell it’s helping, after only two doses. (I wish it didn’t have such horrible side effects, I’d just stay on it …) I’m also on Protonix while on the prednisone to help protect my stomach, although I was supposed to have been on it for quite some time since I also take Mobic/meloxicam. In addition, I am continuing to take 20 mg of Arava every day.

I can’t say I’m completely happy (and won’t until I see what miracles Xeljanz might deliver), but I’ve at least come out of my discouraged funk. (This may just be a side effect of the prednisone which can make me slightly manic.) I now have a plan of attack which is more than I had. Any plan is better than no plan.

Again, thank you to everyone for their support and encouragement. I’ll keep you posted as things go forward.

I hope whatever factor comes into your life today makes you X-tatic. Thanks for checking in.

Snap, crackle, pop!


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I can’t remember a time when my joints didn’t pop. Even as a kid I’d sit watching TV and flop my hand back and forth just to hear the snapping sounds, like a kid popping chewing gum. Must have been terribly irritating. Pluggers snap crackle pop cartoon

As an adult, I was at an appointment with my orthopedic surgeon and when I slid off the exam table, both my ankles popped loudly. I didn’t pay any attention but it startled my doctor who immediately started examining them and asking if they hurt. I explained that was the norm, not the exception for my ankles.

The list goes on and on, from the TMJ issues that make every meal a rhythm section down to my ankles. I can make my fingers sound like castanets. I used to pop my knees and hips out of joints just to get a good stretch. The only joints that I think are immune are my elbows.

But the interesting thing is, when my joints are swollen, my joints don’t pop. (Which makes sense when you think about it.) Even when the swelling is slight enough not to be very visually noticeable, I can tell something is going on because my usually vocal joints go quiet.

I doubt this makes any scientific journals or gets used as an RA measure like DAS28. However, it’s important to understand our bodies and the ways it tells us what’s going on. As an example, a mother of child who had badly injured his hand noticed that the affected fingers didn’t wrinkle in water. As the child healed, the wrinkling effect returned to his hand. Water-wrinkled skin is now often used as an indicator of nerve activity in various parts of the body.

So when I get up in the morning and things go snap, crackle, and/or pop, it’s not a bad thing.

Here’s hoping that whatever pops up in your life today is a good thing. Thanks for checking in.




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I’m a pretty even-keel kind of girl. I seldom get very angry or very down. On the other side, I also seldom get giddy happy over much. I enjoy life, I’m just generally calm about it.

So when I say I’m discouraged, that’s like a -8 on a scale of -10. I’m not at the crawl-under-the-covers-and-hide-and-cry part yet, but I’ve quit seeing the light at the end of the tunnel.

My Cimzia doesn’t seem to be working.

I reported medical discussions in an earlier post about what’s next for people who don’t respond to TNF blockers. One of the interesting things about the linked article is that people can actually build up antibodies to a drug just like they can to an infection. This basically creates a resistance to the drug.

I think that’s what’s happened. I started Cimzia in mid-October and it seemed to take a while to take effect. By January, I felt like it had started helping but it wasn’t lasting the full two weeks. In addition to the 20 mg of Arava I take, we added back in 7.5 mg of Mobic twice a day.

Now I can’t tell it’s working at all. It’s like I’m going backward. When I wake up in the mornings my hands are so sore and swollen that I can’t make a fist. My feet are painful to walk on. I’ve had at least two major flares in the last few weeks.

I’m not due to see my rheumatologist for another month, but I will probably move up the appointment. Usually I go in with some thoughts on what direction we should take, but I am at a loss at this point. I’ve been on MTX, Humira, Simponi, Enbrel, Orencia, and now Cimzia. I am not a good candidate for infusion therapy. I almost think I’d rather have the RA than go through the sheer torture of trying to start an IV in my poor veins. (I had some labs pulled the other day and after trying the most likely places, they finally found a vein in the back of my hand that worked — until it blew out.)

So I feel like I’m at a standstill. What I’m doing isn’t working but I don’t have the will to move forward and try something new. If there is good news, it’s that I trust my rheumatologist and I know I can talk to her about the situation. That step I can take.

I hope whatever you’re doing is working well. Thanks for checking in.


If not a cure, perhaps a new direction in treatment


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This past week a new study was published that may turn conventional thinking about RA on its ear. Right now, it’s assumed that RA is caused when the body attacks its own healthy cells. This new research has found that there is actually a “target” attached to the cells that are attacked. I’ve put a link to the article at the bottom if you want to read the entire thing.

Researchers at Osaka University have found that people who are susceptible to RA contracted the disease when certain “misfolded proteins” attach to healthy cells rather than being processed into peptides. In healthy people, the proteins are processed normally.

This misfolded protein makes the cell look like an abnormal cell that needs to be destroyed, so the body attacks it. They looked at the disease down to a molecular level and found that molecules that are supposed to bind to part of the abnormal cell targets in order to have lymphocytes recognize the targets for attacks, actually bound to the abnormal proteins. Because of this target attached to an otherwise healthy cell, the lymphocytes attacked the molecules.

New RA Treatment

In the diagram above, on the left side shows the current thinking where the lymphocyte itself goes abnormal and attacks the healthy cell. The new thinking is the lymphocyte is normal, but it sees a “target” caused by abnormal protein attached to an otherwise healthy cell.

The goal is to develop a drug that is targeted at denatured proteins to
dissolve them, or a method of examination that will allow doctors to make a
diagnosis of the disease at an extremely early stage.

There are some usual “reporter” issues with the article in that they describe RA as resulting in the “slow deterioration of the joints of the hands and feet of patients,” but I put this down as a reporter research problem, not an issue with the study.

All I can say is that I love it when studies such as these open up new avenues of hope for a cure or better detection and treatment options.

I hope whatever treatment option you have is working well. Below is the link to the article.





What’s next?


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I ran across a very interesting article about the “next” treatment options for RA patients who either fail to respond to TNF-inhibitor biologics (primary non-responsiveness) or the drug loses its effectiveness (secondary inefficacy where the body may develop antibodies to the drug). These are some of the most popular biologics on the market and include Remicade, Humira, Cimzia, Simponi, and Enbrel (which also includes a circulating receptor fusion protein — whatever that is). I personally have been through all of those except Remicade and also Orencia which is not a TNF receptor but rather affects the action of T-cells.

I’ve provided the link to the entire article below (which is a blogger’s trick to get you to read the entire blog post first), but here are some things that struck me about it:

  1. About one-third of patients will make a change from a TNF inhibitor drug within a year.
  2. If the reason for changing the TNF drug is because it isn’t working well for the patient (as opposed to toxicity or side effects), many clinicians would consider trying another anti-TNF agent. However, there is evidence (four to five studies) now show equal or better results for changing to a drug other than another anti-TNF agent.
  3. A study published in the Annals of the Rheumatic Diseases showed that rituximab (Rituxan) was significantly more effective than an alternative TNF inhibitor after a first failure.
  4. A different study published in the same journal showed similar results for abatacept (Orencia) at six months, but was not as effective as rituximab at 12 months.

Many of us have been through a gamut of treatment plans searching for something that works. There is always the early part when you’re wondering if the drug will “kick-in”. Sometimes it does but then (according to my experience) it will stop working as well or seemingly stop altogether. So having some hard evidence on what does and doesn’t work in these cases and what the criteria might be for selecting “what’s next” is encouraging. Note that Actemra and Kineret were also mentioned in the article, but without any specific results.

But what struck me the most is something that it seems we don’t hear that often — an interest in patient preferences. Specifically, the article pointed out that patient discussions need to include their preference for an infusion vs. injection and for monotherapy or multiple drugs.

Additionally, one of the physicians interviewed commented, “It’s also important to keep in mind the patient’s perspective. Their numbers might look good, and their joint exam might look good, but if they’re still having a great deal of fatigue and musculoskeletal pain secondary to their RA, that’s also an important integral part of the whole treatment.”

Wow. All of that great information AND caring what the patient prefers and how they feel instead of just how their numbers look. It doesn’t get much better than that.

The bad news? Well for people like me who have been on multiple biologics, the article says, “”But what gets extremely frustrating is patients who have already been on multiple biologics, TNFs, one or two non-TNFs. They have a very small chance of having a major clinical benefit with a further agent.”

We’ll see. There are new drugs and treatment ideas coming along and I haven’t been through the entire list of current drugs (yet!).

I hope whatever treatment plan you’re on is doing wonders. Here’s the link to the article. Thanks for checking in.  http://www.medpagetoday.com/Rheumatology/Arthritis/44257

A great new book by an (almost) home boy


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I believe one of the greatest tools of fighting a chronic illness is the accessibility to the experiences of other people with the same condition. I know that I have been encouraged and enlightened by the many friends I’ve made in the blogging community. Beyond that, experiences recounted in books like Your Life with Rheumatoid Arthritis by the brilliant Lene Andersen, add a scope and depth to the mosaic of information on RA that is invaluable to other RA patients.

I’ve just come across another promising book, So Young – A Life Lived With Rheumatoid Arthritis, by Daniel Malito. Daniel contracted JRA at 9 years of age. Now 37, Daniel recounts his struggles and triumphs of living with the disease for more than a quarter of a century. Among other accomplishments, Daniel is a contributor to Creaky Joints, one of the outstanding arthritis organizations.

As it turns out, Daniel is from Garden City, New York on Long Island. I was born in Garden City, Kansas — a small city that’s in southwest Kansas, about one-half inch from the Colorado state line on most any map. My Garden City became (in)famous because of its proximity to Holcomb, Kansas, the home of the murdered Clutter family that was chronicled in Truman Capote’s book, In Cold Blood and further tied to that incident through the brilliant portrayal of the book’s author by the late Phillip Seymour Hoffman in the movie Capote. Other than my brother, I’ve never actually run across anyone else from any Garden City so it was quite serendipitous to find such an amazing book about JRA and someone (almost) from my home town.

I encourage you to take a look at the book and to give Daniel a shout out as well. (Link to his website: http://www.danielpmalito.com/.)

Thanks for checking in.

The D word



I reported in my last post that I was changing primary care physicians. This was not by choice. I am very particular about my health care professionals and I had been going to this doctor for most of my life. He’s helped me through a lot of stuff and even saved my life a couple of times. I saw him last November for a regular check up and, as he is older than I am, I asked him if he was going to retire any time soon. Between his age and constant complaining about “Obama Care” I wouldn’t have been surprised to see him hang it up. He assured me that he had just renewed his office lease for three more years, so he would be taking care of me for at least that much longer.

Then he died. Suddenly. Of a stroke.

I missed the obituary in the paper. It was during a weekend when I was working long hours and had skipped my usual morning paper routine. My husband was trying to get some information clarified for a life insurance policy and so spoke to the office who let us know.

He has been such a constant in my life for so long — one of the few people I really trust in my life. I am still a bit disoriented by it. The last few years I have been seeing him every 3-4 months because I need to be checked due to some of the medication I am on. I could talk to him about anything medical or not and our appointments generally lasted longer than the standard 15 minutes. It’s odd that I’m not planning for my next visit to see him.

A week or so I was reading the obituaries (which I read every morning along with the comics) and there was an obituary for someone who had the exact same birthday as I do. True, she was one of the younger people in the paper that day and she had health issues even more serious than mine, but it is startling to realize that people your age are starting to show up in the obituaries.

It’s one thing to be startled by the death of a perfect stranger, but it’s another to lose someone who has been part of your life for so long.

In the meantime, we’re scrambling to get established with a new doctor because, among other things, we have a number of prescriptions that will need to be refilled and we can’t do that without having some to prescribe them.

But I will miss my old doctor. It was nice to have a friend in the exam room.

I hope the only D word that visits you today is “delightful”. Thanks for checking in.

Full Disclosure


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So I am switching to a new primary care physician. (More about that in a separate post.) My first appointment is in about 10 days and of course I have all the new-patient paperwork downloaded to fill out. I hate that stuff and even as an established patient you get to fill all of that out the first of every year anyway.

But I haven’t seen this guy before. We’re starting from a blank slate. He does office in the same medical complex as most of my other doctors and he’ll have my medical records from my previous physician. This is a big change for me because, after 30 years with my other doctor, he and I had developed a good relationship and a good approach to my health care. I hate training new doctors.

But going over the paperwork which asks for current drugs, past surgical history, lists of major diseases and complaints, I noticed a big gap in the information requests. It doesn’t ask for the contact information for any other doctors who treat me. To me, this is a major oversight. What if he finds something on an exam or a test that my rheumy needs to know about? How would he even know?

So, in addition to insurance, scripts, surgeries, number of siblings and all the other stuff they want, I’m going to include a list of my other health-care providers. In the age of medical records this may be redundant. However, especially when starting fresh with a new doctor, I think knowledge of my other health care providers is an important aspect of establishing my care.

I hope whatever disclosures come your way today are the good kind. Thanks for checking in.


Even I couldn’t ignore this


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January was crazy for me. I was wrapping up a major project and that included long, long hours and lots of weekend work. I barely had time to come up for air, much less attend to those non-essential things like laundry. (Thanks to my husband, we made it through.)

But not even I, in my work-induced fog, could ignore the recent major news stories about rheumatoid arthritis. And while I have reservations about them, unless you’re Bill Clinton or Anthony Weiner and their various sex scandals, the old adage that there is no such thing as bad publicity is certainly true. Let’s face it, when it comes to diseases, raising awareness is a critical early step in finding substantive treatments and eventually a cure.

The first was on January 17, marking the 50th anniversary of the Surgeon General’s war on cigarette smoking. The announcement tied cigarette smoking to a number of new diseases including Type 2 diabetes mellitus, age-related macular degeneration, erectile dysfunction and, yes, even rheumatoid arthritis. Of course, the news was really about the real health issues of cigarette smoking, but this kind of awareness of RA can’t be all bad.

The news media reported cigarette smoking as a cause of RA, but looking closer at the information, that’s not the way I interpret the news. The foundation of the surgeon general’s warning stems back to 2001 research that shows the profound impact of cigarette smoking on RA patients, including the fact that they are less responsive to treatment. Part of this is the apparent effect of smoking on blocking TNF inhibitors which are the disease modifying elements of five of the most-used RA biologics on the market: Enbrel, Simponi, Humira, Cimzia, and Remicade. The way I understand it, cigarette smoking doesn’t actually cause RA, but your chances of receiving relief or going into remission are greatly reduced which means a greater chance of debilitating illness.

The other news story just happened. It appears that the USDA, the National Institute of Health, seven nonprofit health organizations, the major pharma trade association, and 10 drug makers have formed a public-private partnership (named Accelerating Medicines Partnership) to assertively address chronic diseases including Alzheimer’s, Type 2 diabetes, and two auto-immune diseases — rheumatoid arthritis and lupus. The partnership announced Tuesday will seek to identify biological targets present in a disease, such as abnormal genes or particular proteins. The goal is to not only find better treatments but also to find tests that better identify the diseases at an earlier stage. It’s a five-year program with a “modest” $230 million budget the first year. Not surprisingly, $130 million of that budget will be focused on Alzheimer’s research, but I was heartened to see RA included in the studies. I’ve included the full list of participants below.

While I am the first to look with askance at anything that corporate America does (being somewhat cynical that anything they do has more to do with corporate profits and less for the good of mankind), I am frankly astounded that this partnership exists in the first place. How this came about in this age of corporate competition is no less than amazing. I only hope that advancements do come out of this (and not just endless committee meetings) and that, while RA and lupus are low on the totem pole, that some positive results trickle into the RA community.

So, seemingly good news. Certainly good exposure for a terrible disease. I hope whatever news comes your way brings a smile to your face. Thanks for checking in.

Participants in the Accelerating Medicines Partnership:

  • DRUGMAKERS: AbbVie Inc., Biogen Idec Inc., Bristol-Myers Squibb Co., GlaxoSmithKline PLC, Johnson & Johnson, Eli Lilly and Co., Merck & Co., Pfizer Inc., Sanofi SA and Takeda Pharmaceutical Co.
  • NONPROFIT FOUNDATIONS: Alzheimer’s Association, American Diabetes Association, Foundation for the NIH, Geoffrey Beene Foundation (supports early medical research), Lupus Foundation of America, Rheumatology Research Foundation and USAgainstAlzheimer’s
  • INDUSTRY TRADE GROUP: Pharmaceutical Research and Manufacturers of America
  • GOVERNMENT AGENCIES: U.S. Food and Drug Administration, National Institutes of Health

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