Thursday, August 30, 2012

8/30/2012 Rheumatoid Arthritis Diary: horrible side effect while on Humira

I thought I was hitting the jackpot with Humira, a biologic drug that is effective for many people with rheumatoid arthritis. I had been on Enbrel for about 4 months and while the weekly injection did help with the debilitating joint pain, it made me sick (fever, chills) for about 2-3 days after taking the needle. That meant my weekends were shot -- I took it on Saturday -- so that I could be functional during the week at work. Not optimal quality of life-wise.
So I asked my rheumatologist if I could try Humira, which is taken every other week. It's in the same class of drugs as Enbrel, but works slightly differently, which meant a chance of less (or more) side effects, but it was worth the try to see if I could get more lasting relief without as much impact on my body.
Dose #1 went really well; other than feeling a little weak and tired the day following the shot, I had joint pain relief and no other side effects to speak of. So I was cautiously optimistic, knowing that sometimes side effects can show up with accumulated doses as your body adjusts to being hit by these sledgehammer drugs that can actually slow or halt joint damage caused by RA. I was able to go to my usual physical therapy for the bursitis in my left hip and recover quickly without joint pain.
And Dose #2 started off uneventfully as well this past Saturday through Monday. On Tuesday I was feeling a bit more dull muscle pain in my lower back and right hip (which is unaffected by bursitis), which was odd. And then yesterday I was pretty much fine -- at my usual 4 out of 10 on the pain scale.
The switch flips
However, while walking from my car in the afternoon to PT at the local children's hospital (it has a heated pool), it was like a switch was flipped in mid-step -- a lightning bolt of excruciating pain shot from my lower spine near the lumbar region of my back, completely 1) inflaming  a different bursa in my left hip 2) almost paralyzing the muscles in my low back, 3) a sensation of excruciating muscular and nerve pain down both of my legs to the knee, involving my hamstrings and quadriceps, and 4) inflaming bursa in my right hip. I went ahead and dressed for PT. I could barely get my swimsuit on.
Needless to say, I couldn't do many of the exercises or stretches in the pool that I was able to do easily just a couple of days before. I had to get out early. I showered and dressed -- which took a very long time since I had a hard time dressing. Lifting my legs required sitting down to put things on.
When I got home, I could barely unfold myself from the car.  I took 800 mg of ibuprofen, which took a while to work, and it barely cut the pain. I spent the rest of the night standing up and pacing. Sitting was excruciating. Standing was excruciating. Lying down was worse. Almost every position hurt.
Familiar side effect pain.
The minute the shooting pain that afternoon I recognized it.  The last time I had it was several years ago - a bad reaction to an oral medication (statins) that took several days to get to the same excruciating point. It was the infamous "muscle pain and weakness" warning they now give patients and you hear in the commercials, but it wasn't well known at the time. I was told to try different doses and kinds of statins, however, each gave me the same excruciating result after several days. And each time the low back pain and weakness would go away after stopping the statin.
Needless to say, I don't take statins any more.
So one of the things I did when I got home was look up Humira side effects again. And lo and behold:
Musculoskeletal side effects have included back pain in 6% of patients; and arthritis, bone disorder, nonspontaneous bone fracture, bone necrosis, joint disorder, muscle cramps, myasthenia, pyogenic arthritis, synovitis, and tendon disorder in less than 5% of patients. A case of severe myalgia has also been reported.
Nervous system problems. Signs and symptoms include numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness.
Back pain; headache; mild pain, redness, or swelling at the injection site; mild stomach pain; nausea; runny or stuff nose.
So I spoke to my rheumatologist this AM about the symptoms, so she suggested going to urgent care to be examined, and possibly putting me on steroids (don't want that; it will mess with my blood sugar control). Kate's going to have to drive me. I can't possibly handle it even though urgent care is less than a mile from home. I had to stand up and lean on a counter to even type this diary entry.

Monday, August 27, 2012

Calm down, peeps: Mittens didn’t pay Journey to play at the Republican National Convention

This post is clearly not for everyone—those of you who think Journey sucks can just move on to the next blog entry. Also, for the “No Perry, No Journey” crowd – let it go. This is not the place to stir up that argument.

My music and politics rarely intersect. Most regular Blenders know I have a long-time, unlikely obsession with the band Journey (and get enough grief about it to last a lifetime) so it was no surprise when my Facebook wall and email were populated with hysteria-laden messages about a story that Mitt Romney had paid the band $500K to play at the Republican National Convention.

If there was ever an apolitical band, it would be Journey, but I guess people felt I needed to address or respond to this “news” originally reported by TMZ. I already happened to know through my grapevine of GOP friends (yes, I do have them) some time ago about the gig, and that what was put out there wasn’t accurate. The band was hired, like many acts, for private events occurring in Tampa during the convention.
The facts: Journey was booked to play a private Creative Coalition party in Tampa on 8/30 that is going on concurrently w/the RNC. It’s actually a benefit for Citizens Helping Heroes, a “non-political, non-profit 501(c)(3) organization based in Washington, DC and dedicated to supporting those who selflessly defend our collective freedoms, primarily through their military service to our country.” The Creative Coalition has booked bands for private functions during the RNC and the DNC (the B-52s, btw, were booked by CC to play a private bash during the DNC). It’s a lucrative payday for the bands.

BTW, I have no idea about the politics of any of the band members (guitarist and founder Neal Schon, lead singer Arnel Pineda, keyboardist Jonathan Cain, bassist Ross Valory, and drummer Deen Castronovo); bands play private gigs we never know about all the time — and for classic or legacy bands, touring and private gigs are the big meal tickets. Of course for Journey, with Don’t Stop Believing as as the most popular single of the 20th century and a boatload of hits you all know well, Schon, Cain and former lead singer Steve Perry probably can financially coast on royalties/licensing alone.

It was ridiculous last night — I had to go on a mild Twitter fest with a fan who was apoplectic about the inaccurate news and was taking it out on Arnel Pineda, who 1) isn’t a managing member of the band, and 2) has steadfastly been about the preserving the legacy of the band’s popular sound, peace, equality, and definitely not politics. It reminded me how quickly folks get heated and personal on social media with only a tenuous grasp of the facts. It was just weird reacting to something outside of my normal sphere of political discussion. BTW, Arnel’s fans are known as Plokkers and hang out at his pad to chat with the singer from time to time.
Below the fold, some of my photos from the last Journey gig I attended (Raleigh, August 2011). I’ve got tix to see the band in Greensboro later this year; hopefully my health will hold out…

Blogmistress heaven: five new songs from ‘Eclipse’ debut in throw-down set by Journey in Vegas

* Music overload: my Journey immersion weekend

* The blogmistress trip to NY to see Journey on The Today Show

* Your blogmistress meets some of her Journey rock stars!

Here are some pix from my album
Deeno sitting in to play skins for Night Ranger during Sister Christian:
Jon doing a hot jam:
Neal rocking the house:
Arnel was working hard in some serious humidity. We were all soaked.
It was a thrill to meet Jonathan Cain — the man responsible for penning many of the hits most of you know, including Don’t Stop Believing. He was mellow, kind and thoughtful.
And yes, Arnel Pineda, the current lead singer, is as wonderful as can be. I brought him a Durham Bulls baseball shirt. The Bulls and my town were featured in the movie Bull Durham, and wanted for him to have something local to remember us by:

Friday, August 10, 2012

Romneybot 2012 major malfunction: Obama campaign, please don't talk about my business record anymore!

Please, someone break out the tiny violin and a fainting couch for the delicate Romney campaign. Apparently his Darth Vader approach to business at Bain -- leaving Jedi Knight carnage on the economic landscape by driving businesses into the ground -- is now off limits, according to Mittens. In an incredible interview with NBC's Chuck Todd, the all-but-nominated GOP presidential candidate is beside himself that the Obama campaign unearthed his Bain record. Now Romney deems his business history -- and with it his record of "acumen" he's been selling to the American people -- is now "personal" and wants Team Obama to leave it alone.
“[O]ur campaign would be-- helped immensely if we had an agreement between both campaigns that we were only going to talk about issues and that attacks based upon-- business or family or taxes or things of that nature."

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“[W]e only talk about issues. And we can talk about the differences between our positions and our opponent's position.” Romney said of his own campaign: “[O]ur ads haven't gone after the president personally. … [W]e haven't dredged up the old stuff that people talked about last time around. We haven't gone after the personal things.”
Bwahahahahaha....Uh, no. Huff Po:
To date, Romney has insisted that the attacks are personal, but the interview with MSNBC would be the first time the former Massachusetts governor has requested the Obama campaign to stop talking about his business record -- as he appears to imply in the quote.
But Romney himself has touted that same record throughout his candidacy, frequently making the case that his private enterprise background would enable him to serve as a better commander-in-chief than President Barack Obama.
Mittens, it's time for that Veep accouncement because this hilarious political meltdown is going to be all over the TV and interwebs all weekend.

Wednesday, August 8, 2012

People -- I can't speak, but that doesn't mean I can't hear or think...

The good news is that my vocal cords and cricoarytenoid joints near my larynx are not affected by my rheumatoid arthritis. That was my major concern last week -- about a month ago my voice started deteriorating for no apparent reason, and the muscles around my neck were inflamed. The trip to the ENT left me with a diagnosis of "muscle tension dysphonia":
Muscle tension dysphonia (MTD) occurs when the muscles around the larynx (voice box) are too tight during speaking, such that the voice box does not work efficiently. A person may use excess tension when speaking, and the voice may feel quite strained. Some patients complain that the throat feels tight or even feel a muscle ache due to MTD. The voice may sound strained or tight.
Why did this happen? I didn't put it together at first, but my guess on timing is that one of the meds I increased in the last month (Lyrica) to address the neuropathy in my feet may be the culprit. Its side effects have increased, including 1) increasing dry mouth and 2) edema or swelling in feet/ankles. Basically most of my fluid intake was going to my legs and feet each day, depriving my vocal cords of moisture; my muscles started tensing up because it hurt to talk. At night when my legs are elevated, the edema drains and I have to go the bathroom a couple of few a night. Then in the AM my feet and legs are back to normal size, and that cycle starts again. I was definitely not drinking enough either. Not a great incentive to do so when you're up at night peeing out all that excess fluid.

So, the "cure" is 1) voice rest, 2) PT, 3) drinking at least 64 oz a day (argh) to balance the impact of the Lyrica and get my muscles relaxed and my vocal cords adequate moisture. The ENT's sending me to voice therapy and PT for my neck and shoulder pain on Friday and Monday, but the big fun is my voice rest mandate for the week. No talking, save a few whispers will help reduce the muscle tension and strain. 
How's that voice rest working out at work?
This is amusing and frustrating to experience. When I'm at work I wear a clever button from the Duke Voice Center that says "I'm resting my voice" to remind me to shut up and to let people know I'm not being rude by not speaking to them. Even so, people come to my door, or see me in the hall and inadvertently do everything in their power to try to make me speak. Like asking how I am or why I'm wearing it is nonsensical, but it has repeatedly occurred.  Now I do know a bit of American Sign Language alphabet, but that's unhelpful if the other person doesn't know it.
This inability to communicate vocally is hard for people to wrap their minds around.  I've had work colleagues:
1) whisper at me;
2) speak louder than normal to me as if I cannot hear;
3) think my lack of voice means my brain isn't functioning ("I'll leave you alone," or "I'll come back later")
4) talk to me and still expect me to speak, as I mentioned above.
I've had to cancel meetings that I usually moderate and ask colleagues to email me with questions about reports that we would have gone over in the meeting. In one meeting that I attended but did not moderate, there's also a lot of awkward impatience involved (for me and them) with waiting for me to write out comments or observations to add to the discussion.
But this temporary situation shows just how ill-prepared the average person is to deal with a disability of this nature. Our ability to speak allows us to convey a lot of information in very few words. Body language (thumbs up, down, OK gesture), is pretty limited when you need to communicate detailed thoughts or nuances.
Those who can communicate vocally assert their privilege/ability to try to force the mute to communicate on their level even when logically they know the other person cannot speak. You can see the frustration on their faces; they'd rather avoid me rather than try to compensate for the communication delay. Well, of course -- a pad and pen is a poor substitute.  I've also had to whisper from time to time because of my frustration in moving conversations along so I can get back to work. They don't want me to break my vocal rest, mind you, they just don't know what to do, so they avoid. Oh, well, it gives me more precious time to do desk work.
I haven't tried this yet, but I suppose real-time chat, projected on a screen in a meeting would help things along, since I type faster than I write longhand.
Many singers and people who professionally use their voices a lot usually have to partake in voice rest from time to time to preserve their pipes. My experience with voice rest this week makes me wonder how they manage with the intense social pressure to speak when they shouldn't.

Saturday, August 4, 2012

When a trip to the grocery store is like running a marathon

Because of the larynx problems (vocal cords are shot), my rheumatologist said to hold off on the Enbrel shot this AM, until I can see the ear, nose and throat specialist on Monday to ensure I don't have any infection. Since Enbrel and all biologic drugs suppress the immune system, any minor infection can turn into a big problem and land you in the hospital.

Usually on Fridays the weekly Cinderella effect of Enbrel (my joint pain goes down to like a 2 out of 10) that lasts from Tuesday to Thursday winds down. So the bad news is that today my  rheumatoid arthritis joint pain and fatigue have returned with a vengeance; the good news is that the side effects of Enbrel (fever and chills) won't happen this weekend.

Trip to Harris Teeter schools me on my limit

Kate and I went to the grocery store to get supplies to prepare meals for the next several days. I started out feeling OK, a bit sore. I managed to limp around the aisles to get what we needed, occasionally leaning on the cart to stave off the searing bursitis pain in my left hip that the rheumatoid arthritis has "gifted" me over the last few months.  

God, we were only there perhaps 30-45 minutes but it seemed like an eternity. I told Kate that I was DONE. We got the packages home; Kate had to carry the heavy bags and I feebly got up the stairs with a couple of light ones. I am EXHAUSTED and in searing pain, just unreal and an unnatural fatigue. I'm typing up this post and then going to lie down. As I recall when these episodes happen (and it could be the fibromyalgia flaring up causing the fatigue). It is an unpleasant reminder of just how bad the chronic pain was before Enbrel. If all goes well at the ENT on Monday (no infection going on), then the Dr. will have me start Humira, another biologic that is taken by injection every other week.

One frightening thought -- this means I have to make it through the work week until next Saturday to take that Humira. Since I don't know how bad the side effects will be, I don't administer these meds on a weekday, so as not to lose time on the job. I just don't know how I'll endure this blowback flare pain for a week.

Thursday, August 2, 2012

Update on the mystery of the disappearing voice

Bonus points for the emergency situation while waiting in the doctor's office today.

Today I went to the rheumatologist because of the deterioration of my voice. There are a few possibilities - 1) rheumatoid arthritis attacking the cricoarytenoid joints of my larynx; 2) the biologic drug Enbrel causing some weird side effect, like nodules developing on my vocal cords; 3) an infection of some sort. Anyway, I had to miss more work to go to this appointment (already been out sick once this week; I had been doing well over the last couple of months on the Enbrel before flares started kicking up).

First fun event -- someone in one of the rooms where you wait for the physician either had a stroke or some sort of emergency, so my doctor and the EMS crew had to get her stabilized and I guess rolled over to the hospital from the clinic. The chaos included the EMS coming into my waiting room and thinking I was the patient in question and started to ask me questions. Hmmm. I was sitting there checking Facebook on my phone, so I hardly looked like I was having a stroke, lol. I directed him to the room across the hall...eventually the got the patient on a gurney and off to be checked.

Anyway, I have been extremely hoarse; after about 10 minutes of speaking it starts to hurt, and it feels like something is in my throat all the time. Surrounding areas near my throat and lymph nodes are inflamed. I've also been running a low grade fever for over a week (99.6-100). My thinking is I could have an infection of some sort. It's not uncommon on Enbrel, which suppresses your immune system, to leave you vulnerable to odd infections most people can fight off.

The rheum was concerned enough to refer me to the ear/nose/throat department for a Monday slot instead of the August 21 appointment they originally gave me. Since X-rays cannot detect what damage is in the soft tissues and small joints affecting the larynx/vocal cords, the ENT is going to have to put a scope down my throat to take a peek. Fun.

To be safe, the rheum told me not to take this Saturday's Enbrel shot until we conclude there is no infection present. If it isn't then she wants to switch me to another biologic drug, Humira. That is injected every other week. She's hoping this will reduce the amount of time and level of severity I am sick from the medication. At the present time my weekends are mostly filled with fever and chills and fatigue from the Enbrel. We'll have to see what Humira does.

And now that the RA has left me with bursitis in my left hip that is not helped by Enbrel, I've been re-upped for physical therapy at the heated pool at a local children's hospital for 8 visits. About all they can do for me is strengthen the muscles around the bursa to help some. I cannot have another steroid shot in my hip for a few months (too bad it only helped for about a week!).

Meanwhile, re: the disappearing voice, there's not much I can do except voice rest.  Fortunately don't have a lot of meetings that require that I speak a lot. Re: pain relief, I cannot take NSAIDS for pain because of my liver disease, and I cannot take muscle relaxers for the tightness that is giving me headaches since I have bad reactions to similar drugs. So I'm loaded up on the Icy Hot patches and lotion tonight to try to get some sleep.

Should be an interesting week getting along without Enbrel. My joint pain may return with a vengeance. Fingers crossed it's not completely debilitating.