Being (In)visible


People who meet me for the first time are usually quite surprised to find out at some later point that I’m a cyborg – a term that I think my replacement hip, shoulder, and knee as well as the rods and screws in my spine well qualifies me. I’ve often wondered if these prosthetics, which are implanted deep under skin and tissue, were visible if it would help people understand when I am sometimes compelled to comment that I have rheumatoid arthritis and that I’m not having a good day.

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Good news, bad news, quick update


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I thought I’d provide a quick update.

I had the second of the three “loading” doses of Remicade this week. The good news is that next to swallowing Xeljanz tablets, I must say it was one of the most non-events of my RA history and certainly one of the most boring. There were a few tense moments as the infusion nurse searched for a vein. I was expecting another hour-long search and stick mission like we had last time, but she hit the first vein she tried. (I can count on the fingers of one hand the number of times that’s ever happened to me.) After that it was sit back for two hours and ignore the daytime television program that was on. I did get a low-grade headache about 45 minutes into the infusion. The nurse gave me some Tylenol and added an additional 100 cc of saline solution to help keep me hydrated, both of which helped.

The bad news is that I’m not seeing any positive results of the Remicade yet. That’s not really bad news because it’s only been two weeks since I started treatment, so it’s a bit early to tell if it will work or not. It’s weird because during the infusion I feel these little “pinpricks” in my various joints. First a knuckle will tingle, then an elbow, then a wrist, then a tingle in my spine. It only lasts a few minutes but it’s happened both times I’ve had the infusion. I keep hoping that it means the Remicade is attacking RA in those locations.

I did see the first insurance EOB for the Remicade infusions and list price is $12,000 each. That’s amazing. I thought $2,000 to $3,000 per month for biologics was outrageous. Makes me wonder if I could make a deal with the insurance to NOT take the infusions. They could pay me a discount — say $8,000 per month. I guess if it works, it will be worth it, so fingers crossed that the elixir starts working its magic soon.

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

First Remicade Infusion


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After all the delays and confusion getting the insurance hurdles cleared and the first Remicade infusion appointment actually scheduled, I don’t have a lot to report except that my two-hour infusion actually took three hours because it took them more than an hour and seven different tries to find a vein. That’s pretty par for the course for me, but honest to God, I don’t know if I can go through that every six weeks.

Right now my next appointment is in two weeks for my second loading dose and four weeks after that for my final loading dose before I move to the every six-weeks schedule.

The actual infusion was pretty anti-climactic. Once we hit the vein, we got the medication bag hooked up and everything went smoothly. The next worst thing to the issues getting the IV started was being forced to abide the weekday morning games shows the other people in the infusion room wanted to watch on the television. It was pretty loud so I couldn’t just mentally block them out. It definitely made relaxing very difficult for me.

But the infusion was fine. I didn’t have any reactions. I have a mild headache but that may be from “The Price Is Right” rather than the Remicade. The infusion nurse was nice and really did try not to hurt me finding a vein, but I could tell she was getting concerned.

Fingers crossed that this treatment works. Thanks for checking in.

By the numbers (this is nuts!)


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Like most RA patients I get my labs checked on a regular basis. Among other tests, the bloodwork every two months checks for liver functions. Last time, my liver tests were slightly elevated. The normal result was supposed to be 35 and it was 39. But still, you need to be cautious, so my rheumy’s office sent the result to my PCP and I met with them. The first question was whether or not I was on a statin, which I had been for about a year. One small white pill once a day brought my errant cholesterol levels down to normal limits. However, statins work in the liver and they can add to the overload. So my PCP switched me to what’s known as a bile acid sequestrant that acts in the intestine instead of the liver. These pills are huge and I take three of them twice a day. So I went from seven small tablets a week to 42 large pills a week.

My next most-numerous medication is a drug to help relieve Sjögren’s syndrome symptoms. I take three of those a day, or 21 per week, so now I’m up to 63 pills a week.

For RA, I take leflunomide, folic acid, and a daily pain pill as well as (temporarily) 10 mg of prenisone. So that’s four more pills a day or 28 more pills per week, or 91 total when added to the others. I am switching to Remicade infusions this week, so I did lose the two Xeljanz tablets a day, or the total would even be higher.

In addition to the cholesterol medicine above, to further control my lipids, I take a prescription Omega-3 capsule and a baby aspirin. I also take two blood pressure medications, plus a diuretic. That’s five more pills per day, or 35 more pills per week, or 126 total.

I am on a hormone treatment regimen, which requires two pills a day, or 14 per week, for a total of 140.

Of course, all this is upsetting to my stomach, so I am on Protonix twice a day, so that’s 14 more pills or a total of 154 a week.

That’s just the prescriptions drugs. I also take a multivitamin and, while I’ve cut down on the supplements I take, I do take supplements to help prevent fever blisters, control my blood sugar, and replace the calcium and magnesium I lose via taking Protonix. That’s a total of nine supplements per day, or 63 per week, or a grand total of 217 pills each week, or 11,284 pills a year.

All of this is not counting the two to four Tylenol I take daily and the occasional Claritin to fight seasonal allergies.

This is one of the reasons I blogged earlier about becoming a “professional patient” to be able to focus more on my health. It’s not just my RA, it’s the overall situation. I’ve been eating more healthfully which will hopefully improve the lipid levels, but until I get my RA under control (again), my ability to exercise is greatly limited. And when I’m working 12 to 14 hour days on a project, it’s even more limited.

I have to do something. I will probably go back to my statin and eliminate the new pill, thereby reducing the pill count per week by 42 and work with my doctors to investigate other ways to help my liver stand the strain. That’s not the total answer, but it’s certainly a start.

I hope the things you’re counting today are blessings in your lives. Thanks for checking in.

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.


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.

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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.



You may have noticed that my last two posts refer you to 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

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.

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