Friday, September 28, 2012

Finally - my spine steroid injection is scheduled!

And guess what - it's set for the day before the Journey concert...fingers crossed.

Holy mother of dog. Finally, maybe the end of this disabling pain is near (or a verdict that surgery will be needed). I just got back from an appointment from another arm of the pain clinic at Duke, affiliated with anesthesiology. Since the focus at this clinic is non-surgical approaches to pain management, the doctor I saw looked at my MRI seemed to get excited about my case.

1. I had not had any back injury/incident before this acute incident that sent me to the ER in late August.
2. He usually sees people who have been suffering chronic back pain for years.

This, he said was good (from a clinical perspective); because my disc rupture was recent, it is more likely to respond to an epidural steroid injection (ESI) than a long-term back pain patient.

What was really unfunny is that he was able to, without a problem, schedule me for the ESI next Tuesday. He said it was horrible I had to wait this long; he said if I had gone to this clinic before seeing the spine surgeon over at the orthopedic section at Duke Clinic I would have been in to get a shot no later than the following week.

As in I've been suffering for a month because these Duke units don't "talk" to one another. And here I thought all ESI services in their affiliate units, given all of my records are accessible in every clinic I go to, aren't networked in any way. This makes no sense. You'd think with the backlog of people waiting for these ESIs that they'd be able to see scheduled services across its system so they could funnel patients to get appropriate services. Argh!

Speaking of my current condition...

F'd up. Even the doctor was surprised at the weakness from my left back to the hip and down the leg. He did a pretty thorough physical exam for reflexes and my left leg is so compromised by nerve damage that it doesn't even respond to the knee reflex tap test or other ones near the foot and ankle.  

My spinal pain has spread since the initial acute herniation episode -- my spinal pain now goes all the way down to my damn tailbone. And some of the numbness and pain is going down my right leg, but not all the way down to my foot as is the case on the left side. My strength on my right side is fine.

Different doctors, different stories about what to expect from the ESI

I always come prepared with a printed narrative and timeline of my appointments, treatments and diagnoses to any new doctor, because at this point my case is so complicated because of my various auto-immune and endocrinological disorders and surgeries that I hate to leave anything out. I packed my DVD of my spine MRI just in case.

I was surprised that this doctor was actually prepared for my appointment -- he had read my history in advance of the appointment, we went through my meds, and was very forthcoming about options and probabilities, risks, etc. Both of the doctors I've seen advise a conservative approach, but there were differences:

Dr. #1 (spine surgeon, 9/11/2012)

  • Try the ESI once, see if it helps, consider non-invasive surgery if it doesn't help
  • ESI procedure may take a few days for recovery. Effectiveness known within a week.
  • No aspirin/ibuprofen before the procedure
  • Didn't give me any stats on success rates of either

Dr. 2 (anesthesiologist, pain specialist, 9/28/2012)

  • Wants to do 2 ESIs, one in the central affected area of the spine, one on the left side two weeks later.
  • Recovery should be within the same day/next day. Effectiveness known within a week.
  • If these do not successfully help the herniation causing the nerve damage, consider non-invasive surgery
  • I can take resume aspirin/ibuprofen.
  • Said about 80-85% success rate for resolving my herniated disc with the ESI, about 95% for the surgery.
Most important of course, was that I wanted to know from Dr. #2 whether I would be good to go (with a wheelchair of course) to the Journey concert the next day after the ESI. He said "sure, if the injection doesn't give you some relief, you'll not be any worse off (pain-wise) than you are right now."

I'll take that. The wheelchair is already loaded up in the Subaru Outback...

It's wheelchair time...I have to get to the Journey concert

Come hell or high water, I'm going to the Journey concert next week after buying tix months ago -- before my spine failed me -- I need a positive experience right now.

It's getting old waiting for a chance to get an epidural steroid injection (ESI) to address the acute pain caused by the extensive spinal disc degeneration and a bad herniated disc in my lower back. I need it at the point where the disc is pressing on the nerves causing the numbness, loss of muscle strength and intense pain in my hip and down the side of my left leg to my foot (and to a lesser degree, the same in my right leg). My entire left foot is numb and has been for a month now.

They are so backed up with appointments for the ESI that I: 1) cannot even make an appointment; 2) I have to wait for a call re: a cancellation and it could be less that 24 hours before the outpatient procedure -- so you have to have transport and someone to watch you at the ready. This has gone on since 9/11. No help.

I've been telecommuting for work for 2 weeks, doing half days working up to full days. Being a techy, I had a good set up at home to do this, and I fortunately do a lot of work in the cloud. I can do 90% of my work from home. I have a headset mic so I can dial in to meetings. It's been a godsend to be able to connect with my colleagues and the outside world, but it's frustrating to not be in the office. I really don't have the stamina to handle full days in this condition and walking around the office, and driving takes a lot out of me (as in I need to sleep/rest for a couple of hours afterwards; you don't realize how much your back is involved in driving until you're in a bad way), so I avoid it.

On the weekends it's been pretty depressing, since I have to be off of my rheumatoid arthritis medications (in anticipation of surgery); I'm dealing with the joint pain and fatigue from that on top of the spine problems. Outings to the grocery store that are longer than 15 minutes of walking simply KO me. Last week I had to go back to the car and wait for Kate to finish up the shopping. I feel so defeated, isolated, weak and tired these days. I'm usually in bed by 8.

The bulk of my energy is expended doing my day job work -- after all I am burning my FMLA down at a rapid pace because of my RA; this spinal crap has accelerated my burn rate and I'm financially losing money as all my paid time off is gone. It's a pretty miserable existence, knowing your professional life (and ability to afford one's health insurance) is hanging by a thread.

Today is yet another appointment - this time to another chronic pain management specialist.

At this point it's like why bother, just go for surgery and be done with this sh*te.

So what does Journey have to do with this?

Regular readers know I am a long-time fairly obsessive fan of the band (I went to NYC and stood for hours in the rain at 30 Rock to see them perform on the Today Show last year; see vid below). Months and months ago I bought tix to the upcoming Greensboro show on Oct 3.  When all hell broke loose with my back in August, I was terrified that I'd have to sell my front row seats for the concert.

Right: Your blogmistress with her limited edition Italian 2-LP gatefold album release of Eclipse, (still in the shrink wrap)!

It's not that I cannot walk or stand of course, but any modest distance or length of time standing can be intolerable -- that means getting around in the large Greensboro Coliseum for a concert is likely going to be problematic, so I'm not taking any chances.  The last thing I need is to have an acute pain attack there. I do have a handicapped placard for the car because of my RA that I use only on really bad days, so that's going to be helpful as well.

So yesterday, Kate and I went to a medical supply store and rented a manual wheelchair (one month = $70). I didn't want to commit to buying one since I'm being optimistic that this level of disability is temporary. If I did feel the need to buy one, it's questionable whether my insurance would cover it; I'm still working (and only rated 20% disabled because of my RA) so it's obviously not clear whether it would be needed after a successful surgery.

Anyway, it's a basic folding chair like the one in the photo. Kate can put in the back of the Subaru. Because of my back problem, Kate has to be the one to lift and get the wheelchair in and out of the car; I cannot transport it on my own.

I thought that I'd feel defeated by the use of and need for a wheelchair, but the pain has been so bad that the reticence has gone out the window.

I know the concert is going to make me "pay" -- in pain and fatigue -- but I simply need to have at just one glimmer of  "normal" life and after the bad health year and in particular this last month I've had.

Rock on.

BTW, the concert date happens to coincide with that the first Presidential debate; sorry Mittens and President Obama, I'll catch your sparring on DVR.

* Reconciling the Old Me and the New Me
* MRI results in - not good news; my spine is f'd up
* 9/1/2012 Rheumatoid Arthritis Diary: the ER visit from hell + an update

My vid of Journey's rehearsal performance of Don't Stop Believing on The Today Show, July 29, 2011:

Journey was part of the Toyota Concert Series on the Today Show. The group sang: Don't Stop Believing, Faithfully, Any Way You Want It, and from the latest CD, Eclipse, the rocking City of Hope. Extra points: the group had just played a concert the night before, hopped on a plane to NYC and performed starting at 7:30 AM. Arnel turned in a good performance despite no sleep and no decent time to rest his voice. Neal and Arnel had great interaction with the crowd. We were in line at 5AM in the VIP line in a downpour for over an hour. It thankfully stopped raining and was cool and breezy for the concert.

This was a rehearsal performance of Don't Stop Believing, so it didn't air. They also did City of Hope and an instrumental of Faithfully (AP needed to save his voice to hit those notes live). The crowd sang instead. ;) The were 2 takes of DSB; not sure if they used parts of each for the West Coast airing, or Journey wanted a redo; both takes were good. 

Wednesday, September 12, 2012

Step #1: epidural steroid injection dead ahead - if I can ever get it

It could be 2 or 3 WEEKS before I could get in for an injection to keep surgery at bay. What am I supposed to do until then? I've got almost no paid time off left. This is horrific.

Kate took me to the Spine Clinic on Tuesday and we got a look at the MRI showing extensive spinal disc degeneration and a bad herniated disc in my lower back

The doctor's suggestion is to first take a conservative approach (to relieve the extreme level of pain I'm having to medicate/endure). That involves a steroid injection (epidural steroid injection [ESI]) at the point where the disc is pressing on the nerves causing the numbness, loss of muscle strength and intense pain in my hip and down the side of my left leg to my foot (and to a lesser degree, the same in my right leg). My entire left foot is numb and has been for nearly two weeks now.

This first step is to attempt to get me back to 80-90% of my prior (already compromised with RA) function. He said this is a roll of the dice; some patients with as much damage as mine see an eventual retraction of the disc once it's off of the nerves from the steroids reducing inflammation, but he's also seen patients with less damage not respond much to the steroid injections. He said my herniation is a "fairly good size," and was cautious about suggesting any long-term benefit of ESI.

In my case he advises only doing one injection to see if I have some relief -- it would take about week post-injection to know if it is working. If there is relief for a length of time, I go on to finish the series of three injections over a year. If still have pain after a week, then he would want to move on to a surgical approach ASAP. He also noted that the overall response/prognosis to the injections and surgery is about the same; though obviously surgery requires more recovery time. 

We decided to cross that bridge when we get to it.  We'll know soon enough.

Unfortunately the damage to the nerves that is causing the "dead" left leg may be permanent; the numbness may or may not go away in the long term. 

The doctor said that the steroid injection will definitely have an adverse impact my insulin-dependent diabetes for more than a week, so I have to monitor that closely and probably work with my endocrinologist on that.

We left and got digital copies of the MRI and x-rays of my back done at the ER and later after the rheumatologist ordered ones of the correct area of the spine. You'll recall that the ER trip was memorably atrocious.

For now, what does that mean since I've been out, home from work going on two weeks now?

1. First I have to get the spinal steroid injection. They are so backed up with appointments for this kind of injection (it requires someone to drive you home and watch you, so it's more involved than just the steroid shot I got in my hip about a month ago). It looks like I cannot get an appointment until next week. The scheduler is going to call me with either a) an appointment at a center not far from our house (hopefully) next week, or b) any first-opening they may have this week at the hospital.

NOTE: It's been 24 hours so far and I called and found out there still has been no response in terms of finding me a slot. A sympathetic rep on the phone said she knows personally about the issue getting an appointment for this particular procedure since she's had it herself. She took pity on me and emailed the person at Orthopedics personally while we were on the phone to look into this so I don't fall through the cracks.

That means that until the injection, I'm in the same lousy, painful holding pattern I've been in since the acute ER trip on 8/31. No driving and telecommuting work only as I am able to concentrate, which has been sadly limited in duration. Writing this post has been arduous.

UPDATE (9/13): She called back and said it could be 2 or 3 WEEKS before I could get in for an injection!! What am I supposed to do until then?  I have to be able to work; I've got almost no paid time off left. I saw my rheumatologist this AM and she's going to make some calls to hopefully get me the ESI sooner.

UPDATE 2 (9/13): Can this nightmare get any worse? They call this afternoon and ask if I can go to get the shot at 2PM tomorrow. Kate is having her own medical procedure and cannot drive; my brother isn't here yet to help and watch me since there are side effects and someone has to monitor you after the procedure. Back into the queue.

2. Post-injection. If I am responding well, then I should be able to come back to work with a holding pattern of wait-and-see about whether there is any lasting relief. If so, then it would be a choice of continuing the series of steroid injections...and more waiting to see if the pain management holds and the disc stabilizes.

3. Surgery. If this ends up being the best option after the injection (Endoscopic Spinal Surgery), we'll cross that bridge to work up a plan for second opinions and timeline. 

The reality of living in a state where my status as a second-class citizen when it comes to recognizing my marriage hits home here. I've written an extensive post about how the Family Medical Leave Act is out of our reach in this instance. From my political blog - "Real-world discrimination hits home; report outlines just how far we are from LGBT equality."

We are strangers in the eyes of NC law. Many, many allies do not know this discrimination is legal. From NC state FMLA policy
Spouse – A husband or wife recognized by the State of North Carolina
Amendment One, passed in May of this year, ensures that our relationship will never be recognized by the state. I, and many people fought mightily to turn this hateful ballot initiative back at the polls, but we failed — and the fallout stains our great state, and now fails me in a time of need.
That’s right — my wife cannot take advantage of FMLA to care for me when I need to convalesce for an extended period of time after a surgery. My state tax dollars fund institutionalized discrimination. The sad irony is that if the roles were reversed, I could take FMLA because my employer has chosen to extend the definition of spouse to include same-sex committed relationships/marriages.

Moving on...

4. Rheumatoid arthritis pain. Since this horror is back because I’ve been off of these meds, I'm dealing with this as well. I cannot be on any rheumatoid arthritis meds for 2 weeks prior to any surgery because of the increased infection problem. My doctor said to take the weekly Enbrel shots if things get really bad. That can make me sick for a couple of days, but clears my system in a week, leaving me in a better position for surgery.

But taking care of #4 plus the steroid injection will (cross fingers) make it possible for me to be in better shape to think, drive and work in the near term. 

Double-cross those fingers. I need to be able to work.

Saturday, September 8, 2012

Reconciling the Old Me and the New Me

So I have to wait until Tuesday to see the spine specialist to get his interpretation of my spinal MRI from last week, which showed a lot going on that had not shown up in previous x-rays, though I have been in fairly acute pain for a couple of weeks now. Summary:

Impression: 1. At L5-S1 there is a broad-based disc bulge with large superimposed disc extrusion causing severe canal stenosis and severe left neural foraminal stenosis. The disc has a rim of different signal which may represent blood products associated with an acute herniation.
2. At L2-L3, there is a on broad-based disc bulge with a left far foraminal protrusion causing moderate left neural foraminal and far foraminal stenosis.

Since the MRI, I've not been cleared to drive, and working (or blogging for that matter), requires almost more concentration than I can bear to muster. The acute pain that sent me to the ER -- shooting, electrical feeling pain down from my low spine to my left hip and down my leg to my foot, which feels almost completely numb 24/7 now is merely "under control" -- but that requires ibuprofen, aspirin and painkillers to keep from going nuclear again.

I feel pretty useless -- type A person that I normally am -- especially when on Thursday, I was reduced to the point that simply taking a shower left me so sore and exhausted that I required a nap just to recover.

The ritual of getting up, showering, and before getting dressed applying all the topical pain salves and liniments on my back, legs and feet makes me think I've crossed the threshold into senior citizenship early (after all, I don't turn 50 until next July, I haven't even received my AARP invitation yet!).

The Old Me. The New Me.

I remember all too well when I'd manage to make to work by 7AM on a regular basis, stay all kinds of long hours, putting all of my energy in to my job, stay up all night writing 7-9 posts for PHB. Now I'm like a candle burned down to a stub.

If I can get my sorry @ss together and to work by 9 it's a miracle. Once there I have to think about how much "pain points" is it going to cost me to go to the copier down the hall multiple times, how many trips to the bathroom or up the stairs is "worth the pain effort", preserving energy for meetings where I have to lug equipment or my laptop (which now feels like it weighs a ton when of course it's only about 5-6 lbs.) down to a remote meeting room.

Of course that was when I was going to work. After the ER episode I've spent most of the last week and a half out of the office, I now have to cancel a business trip that would have been involved a lot of walking, lugging bags and my computer around, standing around talking to vendors, stuff that is a no brainer if you're able-bodied and not in acute pain. For those "re-adjusting" to the law of diminishing returns when dealing with chronic pain, it's a real morale killer, but a reality one has to accept on a timetable that is often out of your control.

I actually did put in a few hours of work last week (telecommuting), but that was able all I could handle. I certainly couldn't even handle sitting in a chair at my desk most of the day. While I am medicated out of acute pain while in this holding pattern, I refuse to overmedicate to the point of "comfort" because it zones you out. I hate that feeling. I discussed the dysfunctional health care system (and the epidemic abuse of pain meds in society) in dealing with patients with genuine chronic pain, "When the system fails you: living (or is it just existing) with chronic pain." You have to weigh the benefits of less pain vs. less clear-headed.

So in this crap holding pattern I feel useless, sometimes despondent, alone (not for the lack of great support and care -- and great wheelchair service -- by my wife Kate). I just want 1) relief, 2) competent medical care, 3) news about my options -- which will set off another series of events -- researching for second or third opinions and making a decision about surgery. The MRI sounds bad enough to suggest a surgical option might be the best way, but I'm open to what brings the best chance of lasting relief. That's relative, of course.

Today was another futile attempt at normal. I took a dry Swiffer around the house, did some light dusting, and now I'm in pain typing this. Why did I do it? Because I had to do something normal. I was tired of being useless. I'll probably try going to the grocery store and seeing how far I can make it before giving up.

Yes, I'm hard-headed.

Messages of kindness...and uncomfortable cluelessness

I'm thankful for all the well-wisher messages, but for obvious reasons, "get well soon" is not particularly uplifting to me, not because of the sentiment behind it, but because I know that 1) it won't be soon, and 2) with rheumatoid arthritis and fibromylagia on top of what's going on now, you don't "get better", you at best get into another holding pattern of whether or not you find medications you can tolerate that MAY slow the disease and moderate the pain, but they can also make you very sick.

I think it's hard to know what to say to a person facing a future that is not the "normal" that they experience every day (after all, you "get well soon" from a cold or even a broken leg) and take that physical state for granted. I know because I would be in the same position if I were not the one facing what's happening in my life right now. I now more keenly am aware of the fact that despite the Americans With Disabilities Act, most of the accommodations in public arenas leave a lot to be desired, and most Americans see someone in a wheelchair, or limping, or using a walker or cane as "slowing them down." You see the disdain and impatience on people's faces.  Heck, when I had to do voice rest for a week, my eyes were opened about how incapable and impatient most people are at handling someone who cannot speak as their primary form of communication ("People -- I can't speak, but that doesn't mean I can't hear or think...").

Humans are pitiful, discriminating creatures when it comes to accommodating differences, and don't often extend themselves very well without "retraining" to be aware of their biases to react differently. They'd rather just avoid dealing with people who are different (or differently-abled) at all than deal with the extra intellectual effort (or emotional vulnerability) required.

But here is where I can gripe and moan. For now. It still beats being six feet under. I have to keep saying that.

Wednesday, September 5, 2012

MRI results in - not good news; my spine is f'd up

Damn. I was really hoping it was simply a matter of only Humira side effects, but the MRI on Tuesday revealed a lot of crap that I don't fully understand yet, but what I do know is that it's not good news.

X-rays were not able to detect a lot of what is going on that was affecting the pain radiating from my lower spine, down to my hip and more prominently down my left leg. The MRI, however did all too well.

Indication: Low back pain with leg weakness.

Technique: Extradural protocol MRI sequences of the lumbar spine were obtained without gadolinium.

Findings: The conus terminates at approximately L1. Bone marrow signal is normal.

No evidence of compression fracture. Limited evaluation of the sacrum demonstrates no abnormalities.

Alignment of the lumbar spine is normal.

T12-L1:  Evaluated on sagittal images only.  No significant disk herniation, canal stenosis, or neuroforaminal narrowing.

L1-2:     Mild broad-based disc bulge. No canal or neuroforaminal stenosis.

L2-3:     Disc desiccation. Mild broad-based disc bulge with left far foraminal protrusion. No canal stenosis. Moderate left neural foraminal stenosis.

L3-4:     No significant disk herniation, spinal canal stenosis, or neuroforaminal narrowing.

L4-5:     Mild broad-based disc bulge. No canal or neuroforaminal stenosis..

L5-S1:   Broad-based disc bulge with superiorly directed extrusion. The extrusion measures up to 10 mm in AP dimension. The disc has a rim of different signal which may represent blood products associated with an acute herniation. Severe canal stenosis and severe left neural foraminal stenosis. Severe mass effect on the left exiting L5 and descending S1 nerve roots.

SI joints: Within normal limits.

Impression: 1. At L5-S1 there is a broad-based disc bulge with large superimposed disc extrusion causing severe canal stenosis and severe left neural foraminal stenosis. The disc has a rim of different signal which may represent blood products associated with an acute herniation.

2. At L2-L3, there is a on broad-based disc bulge with a left far foraminal protrusion causing moderate left neural foraminal and far foraminal stenosis.

I'm not certain about what it all means, but some cursory Googling explained some of it:

L2-3: Moderate left neural foraminal stenosis.
The most common cause of neural foraminal stenosis is due to disc degeneration. Through the natural ageing process, our discs may become herniated or bulge resulting in a narrow foramen. As the foraminal continues to narrow, nerves are compressed and the outcome of this is pain, tingling, numbness and weakness in the muscles of the affected area.
Another cause of neuroforaminal stenosis may be due to rheumatoid arthritis or osteoarthritis.
Neural Foraminal Stenosis Treatment
Tradition or conservative forms of treatment may offer short term relief, however most patients find that altering their lifestyle to avoid certain activities or movement offer some pain relief.  In order to experience full relief, surgery is often recommended.  
There are now minimally invasive procedures with a very high success ratio that can be performed and patients experience a plenitude of benefits when comparing these newer procedures versus tradition or conventional surgery.
I have an appointment with a spinal surgeon on Tuesday to discuss the report and the options. I guess I should be scared; I'm more resigned to the fact that my body continues to fail me with new levels of pain and disability. I have to figure out how to cope and make things work. 

Right now I'm in a holding pattern with my rheumatoid arthritis; I'm no longer on Humira or Enbrel, so my joint pain is likely to return fairly soon. I may have to try another option, perhaps an infusion drug like Orencia or Remicade - another decision for another time, my rheumy wants to see what the spine surgeon has to offer. The main issue is handling the chronic pain that will increase while waiting to see what challenge lies ahead to address my deteriorating spine and keeping the RA under control. 

I have to adjust to the reality that all of these changes mean l will never be the person I was a year ago, 3 years ago -- a status of "normal" that I (and most people) take for granted until you lose it.

Sunday, September 2, 2012

9/2/2012 RA Diary: Home and recuperating w/lots of Qs; no DNC 2012 for you, young lady

I went to my rheumatologist on Friday following the epic 11 hour visit to the Duke ER Thursday for what was some kind of neuromuscular event that almost crippled me from the waist down. At this point we're not sure if it is a possible pinched nerve or a reaction to the rheumatoid arthritis drug Humira. My money is on the Humira.

The timing of all of this is particularly irksome because many of my blogger colleagues and LGBT activists are in Charlotte (I blog out of Durham, about 4 hours drive away) for the Democratic National Convention and here I am, nearly housebound, limited energy, and almost no motivation to blog anyway. How far my constitution has fallen. It sucks. But better here in my own home, medicated and awaiting some answers than stuck in that nightmare ER waiting hours for sub-standard medical care. Or worse -- having this neuromuscular attack while in Charlotte.

Anyway, I go for a MRI on Tuesday at the Duke Cancer Center.

Right now I'm in a holding pattern of handling acute and dull pain management along with muscle weakness until we find out if:

1) It's spine-related and I need a referral to a specialist.
2) It's likely Humira and I stop taking it and let it clear my system (another week).
3) It's something permanent caused by Humira.

All of the problems are from the waist down. I let my pain meds wear off every so often, just enough to get an idea of what I'm dealing with:

* low back pain
* shooting pain (much milder than the acute pain) from the low spine to my hips, down my legs along my outer thighs to my left foot.
* continued numbness and muscle weakness in left leg, not the right leg
* whole left foot hard to feel because it is numb
* muscles in the left leg are tight

Since Friday I have gone out for short trips to the pharmacy and store to see what my stamina is like. I have to move slowly; I can only take about 10-15 minutes of walking or standing on my feet before I have to sit down because of the weakness. My hips and legs have pain around a 5 (meaning if unmedicated it would be much worse), and the shooting pain to my foot usually starts up.

New issues since the initial incident last Wednesday:
* I have small muscle spasms almost constantly, not severe, but in both legs.
* intermittent sharp pains in now in both feet that feel neurological in nature happen as meds wear off; my right foot was previously not an issue
* some of the same numbness and tingling has occurred intermittently in both of my hands at night while in bed.

Since both of the ER doctors were completely dismissive of the possibility of Humira side effects, I did a little Googling on the issue and I found this article in the Journal of Rheumatology: Neuromuscular Involvement in Rheumatic Patients Treated with Anti-Tumor Necrosis Factor Therapy – Three Examples. A snippet.

Muscle pain and weakness may be due to defined rheumatic diseases such as PM, but can also be caused by antirheumatic drugs4. The latter should be considered if (1) there is no history of muscular symptoms, and (2) there has been a symptom-free period between start of therapy and onset of myopathy; and if (3) symptoms are reversible on discontinuation of the drug. 
Only 2 cases of PM as a potential side effect of anti-TNF therapy have been reported3,5. Mild myopathic changes have been described in the biopsy specimens of patients with neurologic side effects of anti-TNF-α therapy2. 
We describe patients with muscle pain and neuromuscular involvement upon undergoing therapy with TNF-α blockers. One patient had only muscle changes, the other 2 also had neuropathy.

Basically, the incidents are rare, but do exist. At the very least, you'd think they'd advise to stop taking it (my rheumatologist did - she's adamant that we eliminate the obvious and be cautious about re-upping any dose of the drug so as not to make matters worse).

The sad thing is that Humira (and Enbrel, which I had to cease taking because it made me sick for 3 days post-shot) both quell the joint pain from rheumatoid arthritis; these drugs can work wonders but cause so many side effects a good number of people cannot tolerate them.

Having to lose quite a bit of my mobility -- even to the point of being in a wheelchair most of Thursday and Friday, I realize how much we take our ability to walk, stand and transport oneself for granted. I thought that I'd feel a sense of personal defeat that I had to be wheeled around the hospital and clinic, but the excruciating pain that was so disabling that "sucking it up" was not even an option took that completely off the table.

* 9/1/2012 Rheumatoid Arthritis Diary: the ER visit from hell + an update
* 8/30/2012 Rheumatoid Arthritis Diary: horrible side effect while on Humira

Saturday, September 1, 2012

9/1/2012 Rheumatoid Arthritis Diary: the ER visit from hell + an update

So I spent 11 painful, fruitless hours at the Duke ER on 8/29-30, arriving at 5PM and leaving at 3AM. I'm just now sentient enough to write about it.
It began when I had to stay home on Thursday because on the day prior, I had an episode of pain that was sudden and shocking in its intensity.
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 had recently started a new drug for my RA, Humira, which has as possible side effects back pain and nervous system problems (including numbness, tingling, and weakness in your arms or legs similar to what was described above. They occur in around 6% of patients; I seem to be very sensitive to many medications and invariably fall into the categories with more rare reactions so I am always more alert for such things when I change or start a new med. One of the issues of concern with Humira is it's an injectible that is taken every 2 weeks, so if it was a temporary reaction to that, it would take another week and a half to clear my system.
I went home on Wed sore and hobbling and barely able to change my clothes. I took some pain meds and tried to sleep, which was nearly impossible Wed night because no position was comfortable, and most were excruciating, even with meds in my system.
Thursday morning I was able to hobble to the kitchen and write to my job saying I wouldn't be in. I was able to sit in a chair for a while, ate a bowl of soup and then stand up (since sitting started to hurt) write up my symptoms -- and actually blogged them as well). I called my rheumatologist and she called me back within the hour (!), and said I should go to urgent care. Kate had already left for work. I told her that I wasn't in distress, just very uncomfortable and said Kate would take me when she got home.
My morning meds kicked in and with the extra 800 mg of ibuprofen I was able to go to bed and get some sleep, albeit in odd positions, using pillows to intermittently bolster my left leg depending on how the pain was pulsing.
What ended up sending me to the ER
It was an attack of a similar nature to Wednesday's. I woke up at noon, and my pain medication based on time, had worn off. After merely getting up from bed, going to the bathroom and then walking about 15 feet to the kitchen. The pain almost made me fall down because of its suddeness - that lightning bolt feeling again going from my low spine and around down the sides of my rear end and thighs (the left side much worse than the right). The pain then increased dramatically, with the muscles in my left leg tensing uncontrollably.
I hobbled to the sofa and fell down onto it...and screamed. At the top of my lungs. The poor dogs were scared.
I could find no position to quell it as the pain ratcheted up the scale to what is now my new 10 out of 10 level (a kidney stone attack was my prior 10). I couldn't get to a phone, I would have been incoherent anyway. I tried to lower my pace of breathing and focus on trying to find any position that would stop the pain. I ended up hanging off of the sofa, upside down, with my left leg in the air. I stayed like that for about 10 minutes as the pain lowered, likely because I wasn't putting any body weight on the leg and gravity was working in the opposite direction. I kept chanting to myself that "this is not have to get a grip to get out of this."
I had to think -- what do I do? If I manage to get to a phone and call 911 there's no way they can 1) get in without breaking the door down because I can't get to it and 2) put me on a gurney. The thought of being put flat on my back was intolerable. So I rationally thought -- I need to get a pencil and pad so I can write down emergency contact info if I did call 911 and for Kate so she had it to convey if I was in too much pain to speak coherently.
To get that pad and pen meant I had to get up off of the couch and make it back to the kitchen. There was no guarantee that the pain wouldn't surge once back on my feet. Crawling wasn't an option either. That position would be equally excruciating.  So I steeled myself, and hobbled as fast as I could, grabbed a pen and pad and made it back to the sofa in screaming level pain. Went back upside down for 20 minutes and screamed for about 10. I couldn't even contemplate writing anything. When I did, the F*CKING PEN WAS OUT OF INK. Oh. my. god. no.
Plan B. I didn't think I could make another trip to the kitchen given the pain level cost it was to get there. I thought, I need to get to my sledgehammer pain meds. I figured if I could get a couple in me, it might numb the pain down to a level of control so I could get to the ER.
I made another screaming trip to the kitchen, took 2 pills and then got back to the couch and was at this point crying in pain. How long would it take for the med to kick in? Lying upside down again, Casey (my pit bull) came over to comfort me (or see wtf was going on). I petted her and tried to relax, legs in any position that wasn't excruciating. It took about 20 minutes for it to start working because I felt sleepy. Once the pain got down to about a 5 I was able to sit upright.
With the pain level down I couldn't feel my left leg. It was both numb and tingling, now all the way down to my foot. It was like swinging a dead appendage around. I could put weight on it (painfully, but tolerable compared to what it was 20 minutes earlier), and was able to write up notes, drink some fluids and prepare to go to the ER. Put on a dress because there was no way I could lift my legs to put pants on, put on clogs so I could get my feet in and out without bending. Waited for Kate to get home.
The ER
I figured it would be a long haul but not 11 hours. We arrived at Duke ER, and I was seen in triage within 20 minutes. They took my vitals and the first description of what I had experienced (I had to repeat this story 4 times to 3 different doctors/nurses). All of my medical records and medication history is in the Duke system (and online), so you'd think they could pull it up in Duke ER. You would be wrong. They only had access to stats from a past visit 5 years ago. Thank goodness I had printed out my long list of medications before leaving home.
But what if I had arrived without it, and in pain so great I couldn't concentrate to remember anything? I guess patients are screwed.
I was sent back out to the waiting room in a wheelchair. The room monitor said that wait times were extended because there was overcapacity in the hospital, backing up traffic in the ER as patients waiting to be admitted were being held in ER rooms. The wait time was supposed to be around 5 hours.
Kate and I sat in a room full of people in conditions you'd expect -- wrapped in blankets, lying on benches, coughing, sneezing. Kids crying. Some people with clearly minor trauma injuries -- one woman looked as if she had a bad cut on her hand and had it wrapped and in ice, many others there because they had some kind of respiratory condition/flu/cold.
All I could think about was what was going to happen when the pain meds I had taken before leaving wore off while sitting here waiting to see a doctor. I would be a screaming maniac if I had to stand up and bear weight on my legs.
A few hours went by; Kate wheeled me to the bathroom and back. She went to get a snack. I refused to eat because if the pain ratcheted up again, I knew I would throw up. I wasn't hungry anyway.
Time goes by slowly. Every two hours people were called up by the nurse to get their vitals checked (BP, temp, oxygen levels) and sent back to the waiting area. The TV had a football game on. Eventually the last evening of the Republican National Convention came on. I think ABC was on, and broke in when Clint Eastwood gave his speech.
[No sound was on, so you could only read the closed-captioning. Later the next day when I got home I realized that the captioning wasn't incoherent, it was Clint rambling on like your crazy elderly uncle.]
A few minutes later a gentleman rolled his girlfriend/wife next to me, facing me. She was in a lot of pain and distress, but it wasn't apparent what was wrong with her. I found out when she started hacking, wheezing -- she had no mask on, didn't cover her mouth and then proceeded to vomit. After the fact her husband goes and gets a mask and barf bucket.
People across the room were horrified, I was trapped there in the wheelchair. Kate got up and wheeled me away, but of course it was too late not to be exposed to whatever she had. The scary thing is that some of the RA drugs I take suppress my immune system. Even the common cold can land me in the hospital, so I've been told to avoid places like ERs, airplanes, large conferences if at all possible. Nice.
The "expertise" of the ER doctors - moving bodies out
Finally, at midnight, I get in to see a nurse, who preps me, puts an IV in and draws about 6 tubes of blood. The resident comes in and does the usual drill of asking me why I was there, what was believed source of the pain and where the pain was located. He does a cursory examination after I explain the locations of the pain.
He dismisses the possibility that Humira is involved, despite the drug's web site clear listing of side effects that included what I was experiencing. He thinks its some sort of issue with my spine involving my discs. He does this without doing any kind of diagnostic test, like an XRay. I asked him several questions about why my pain occurred suddenly, I had not had back problems before, and why he believed there wasn't a possibility of adverse reaction to Humira. His answers were, to say the least, poorly informed and he referenced some study about Humira that wasn't relevant to the particular problems I was experiencing. The main issue was that since he hadn't seen a reaction of the kind I was presenting that apparently I couldn't be in that 6% of people who do experience those side effects.
He suggests a muscle relaxer - Flexeril. I told him that in my chart I have contraindication for Tramadol, because it causes seratonin syndrome and that my rheumatologist had told me in the past that Flexeril could cause a similar reaction. He goes "oh yes, thank you for telling me that."
Damn. What if I didn't tell him? He clearly didn't read the Tramadol contraindication in my records.
He then said he would speak to the consulting doctor in the ER.
Well, I laid there in pain for a while, then doctor #2 comes in. She's a bit more on the ball; she doesn't dismiss possible involvement of Humira, but suggests a different reason for my pain than dr. #1 - sciatica. OK. So does this present so suddenly? Does it go away and resolve on its own?
She really doesn't offer any satisfactory answers, but does a better job than doctor #1 of CYA. What made no sense again was that she doesn't suggest getting an x-ray or MRI to help eliminate other possible spinal matters. Because I was persistent in seeking answers about what the source and origin of this sudden acute pain could be, she was clearly frustrated. She said did I want an x-ray. I said yes, I'd rather eliminate disc involvement if that can detect somethign obvious. She said OK.
Since Flexeril was off the table, she then said the nurse would give me Valium via IV.
I've never taken Valium, but my casual understanding was that it's a drug for anxiety, not pain, but what do I know. The nurse administers it and I feel the room moving, I'm dizzy. Since I have not been on my feet for 6.5 hours, the pain is not as acute because no weight bearing has been on them. I get wheeled to x-ray. I only have to slide from the gurney onto the table. They do a couple of views and I'm back on the gurney and wheeled back to the room.
I fall asleep from the Valium. Kate gets a blanket and sleeps in the chair next to me. About 90 minutes later, the doctor comes in and says she wants to see how I walk on the legs in prep to send me home. I walk with a nurse following me up and down the hall and to the bathroom. I am shaky and disoriented from the drug, but able to bear weight with some low level pain (~3). We go back to the room.
The doctor says the x-rays show no spine damage and that  I'll be given medication scripts told to make an appointment with my rheumatologist next week (after Labor Day, so that's 5 days later) and discharged. I was given a sheet with prescriptions for Valium (take 3x a day for pain), and 8 pills of oxycodone to take every 6 hours for pain. Now my math isn't very good at that hour and in that state, but there's no way 8 pills every six hours will last 5 days for acute pain that I was experiencing.
I realized at that moment what this whole rigaramole was -- the ER is probably full of prescription drug seekers and these doctors are so jaded that they have become immune to actually performing good medicine or even good cover your ass medicine. They think many patients coming in with pain want narcotics -- and they would probably be right -- but this display of dismissiveness and lack of desire for diagnostic tests that may be helpful go out the window when there are so many bodies to process in this busy ER.
The poor ER care was worse than I thought - and seeing my rheumatologist for follow up
So I get home and about an hour later, whatever "painkilling" properties exist for Valium had worn off. I was limping and barely able to make it up the stairs from the garage. I quickly get online to look it up. Valium (diazepam):
Diazepam is used to relieve anxiety, muscle spasms, and seizures and to control agitation caused by alcohol withdrawal
Nothing about acute pain treatment, it's a sedative. And, by the way, it didn't help with the muscle spasms either at 5mg. I emailed my rheumatologist at 3:30 AM and told her about the ER experience. Around 8 AM she called me (!) and said she wanted to see me and slotted me in for her last clinic appointment around 11:30 AM. Kate drove me in, and I was placed in a wheelchair since I was too weak for the long clinic walk.
The rheumatologist was able to access the official ER records from the visit, and told me:
  • They took the blood vials then ran no tests on it of any kind
  • The x-rays taken were not even done on the correct part of my back
  • Dismissing the possibility of Humira didn't make sense
  • Valium was mis-prescribed for the need
  • The 8 pills of oxycodone, which would actually address the acute pain, was a ludicrous amount given it was supposed to last for 5 days.
The rheumatologist performed some basic neurological and strength tests during the short visit that were revelatory in ways the ER doctors' assessment fell far short. My left leg, which was still numb and dead-feeling, failed not only a strength test (I couldn't pull hard enough against her hand to stop her from moving it) but she couldn't get a reflex from it when she tapped my knee.
Something neurological is definitely going on, now the mystery is what is it -- Humira or something going on in the spine? The only way to eliminate spinal involvement is an MRI.
Kate then wheeled me went to have blood panels drawn, then down to x-ray for a correct one of my spine. I'm going for the MRI on Tuesday at the Cancer Center. If it's OK, then it's most likely a rare reaction to Humira and I'll have to halt taking it just to be safe, let it clear my system and see if the symptoms abate. If there is spinal involvement, then I'll be referred to another clinic.
Now to recap...

I'm to stay off my feet as much as possible, ice the bursa, stretch as best I can, and take pain meds and not drive for several days until the pain and inflammation is under control and the MRI is analyzed.

  1. 11 hours in the ER = $250 co-pay = zero effective testing and treatment
  2. 90 minutes in Duke Clinic with my rheumatologist = $45 co-pay = effective testing and treatment and follow up.
I am grateful to have health insurance; but this incident should show you the waste and poor care we see because ERs are not the place for basic health care, yet they are full of people who are getting it through the ER instead of primary care physicians, clogging these waiting rooms for acute care that probably can be avoided. The doctors are overworked and stressed and in at least this case, seemingly focused on moving bodies in and out, trying to dodge drug seekers, and ultimately not providing the best assessment or care they can. And that also means a lot of people less fortunate -- without a caring specialist or doctor for follow up -- will end up right back in that ER waiting hours on end without ever receiving the care they need to heal.