Knowing Your (Covering) Doctors, and Knowing Yourself

I sent an email to my rheumatologist, Dr. Mazz, the other day, wondering if I should try going back to a little prednisone to try to get the new, severe swelling in my finger reduced as we wait for the Orencia to (hopefully) kick in.  Apparently Dr. Mazz is on vacation for another week. I got a message from the covering doc this morning, suggesting that I take 10mg prednisone, and that I "should see a response within 5-7 days." There is no mention at all of tapering.  I haven't been on 10mg of prednisone in many, many months. In fact, it's been a very long time since I've been over 5mg. Most recently I tapered extremely slowly over a month+ to 2.5mg every other day. I have serious difficulties getting off prednisone -- it tends to cause further flares, especially of iritis (inflammation in my eyes). I am generally anti-prednisone, except when desperate (or when my eyes are involved because I don't feel like going blind).  All of this should be in my medical records, right there just a click or two away from the message he sent through the Patient Gateway online system. I'm not sure this doctor has read much of my record if that's what he's prescribing...  Either way, it makes me wonder/worry about patients who are not deeply involved in their care -- and that is a surprisingly lot of patients. Hell, that was me just a few years ago. A few years ago, I probably would have blindly listened to those instructions. Today, I'm more in control of my own care. I know my own body much better. I know that I possibly/probably don't need that much prednisone for this flare ... and even if I do, I'd probably decide not to, knowing the power of the drug, and the effects of tapering off, which can be just as bad or worse than the original problem.  I also know that I prefer the care of my own rheumatologist to someone standing in who doesn't know me.  Not sure what I will do. Feels like there is more and new pain, so I'm more inclined than usual to use the prednisone. But for right now, I will try to hold off until Dr. Mazz gets back from vacation, and if I reach the point where I feel I can't wait, I will start out with no more than 5mg of prednisone, and taper off slowly.  

I think I'm swimming about in one of your older posts- just trying to find everything on tumblr about psoriasis- but at one point you mentioned it being an autoimune dis-ease? I'm fairly sure that's incorrect; P is a hyperimmune dis-ease.

Sorry for very belated response. I didn't see this until now. Everything I have heard from doctors and read about online refers to Psoriasis (which I have almost none of) and Psoriatic Arthritis (which I have severely) as autoimmune diseases. I had not heard of the phrase "hyperimmune". I searched for it on google and there is not a lot in the results for hyperimmune disease.  Do you have any links you can share? "Autoimmune disease" is a pretty all-encompassing phrase for diseases where the immune system malfunctions in one way or another. In a way, it makes sense to think of P as being "hyper"  because it overproduces certain cells. But, like I said, I've never heard of that term used professionally. 

Only a small percentage of these are about Psoriatic Arthritis but regardless, I found many of these heartbreaking and inspiring. 

Allow me a moment of self-pity... I miss the ability to make the hike up to see a view like this. (Stolen from my Facebook feed, which can sometimes just be a feed of things I cannot do.)

The above links to an essay from a woman dealing with severe chronic back pain. Even though her back pain is different from the experience of a chronic autoimmune disease like PA, I can't get over how directly this piece speaks to me. My sister sent it to me because she saw the writer in person, and thought her work might speak to me. She was so very right. When I started reading it, I was doing so from a distance. For the past couple of weeks or so, I've been willing myself to essentially not pay attention to my PA, as much as is humanly possible. I'm so tired -- so GODDAMN TIRED! -- of this disease and how completely haywire it's gone over the past year, that I simply need to pretend it doesn't exist for awhile. Of course, that's virtually impossible, especially yesterday and this morning which I spent fighting with pharmacies, insurance companies, and doctors to get my Humira refill in time for my next dose (I eventually "won" the fight - yay). But other than the Humira fight, I've been trying to step back, trying to stop myself from falling into the deep dark pit that is PA.  So, when I first started reading The Back Story, I was doing so unemotionally. Until I read this sentence: "Mel let me be useful in a time when I felt completely and utterly useless." And I choked -- literally choked -- with a sudden, uncontrollable cry. Yes. Useless. I've been using the term "worthless" lately. Same thing. Same deeply difficult and challenging thing. It is HARD not to feel useless when you've lost your full-time job because your pain and intense fatigue makes working for eight hours straight in an office impossible. It's just sitting at a desk, typing -- Who would ever have thought I wouldn't be able to do that at age 37? Not me. And you'd think that would be the worst, but in a way, it's the inability to do the more mundane things that is worse. Cleaning, laundry, shopping, cooking meals -- all things that most people would be happy to hand off to someone else, but these are things I long to do and am thrilled when I feel capable of doing here and there. Things like going to a baseball game or a concert require loads of preparation and come with the anxiety that my PA will swoop in to somehow ruin or dampen the event not so much for myself but more so for the people with me.   When all of these things -- the big, the small, and everything in between -- are a challenge at best and impossible at worst, it's easy to feel like nothing more than a burden.  

This really hits home for me.  I started this blog as not only an attempt to track my health for my own purposes, but as a way to attempt to help others understand what PA is really like. I intended to eventually share it with my family and friends so that they might understand what life is really like for me.  But I haven't yet shared it with anyone outside my PA circle. It feels strangely risky to do so. There is so much misinformation out there about RA and PA. And Kelly is right -- it is not okay. It is hurtful to those of us suffering to have this disease minimized. We need more support, not more people thinking it's NBD.

Continuing with Humira, for Now

After the week (see June 21 post) where I had significant nerve pain every day, that nerve pain has since significantly reduced. Since then, I've only had nerve pain once every few days. It is intense pain every time, but it's only a couple times a week.

I'm still baffled by this nerve pain. Before coming back on the Humira, I was 99% convinced that the nerve pain was NOT related to Humira. Now ... I'm still actually NOT convinced that it's due to Humira, since I was also reducing my nerve pain cocktail meds at the same time the nerve pain increased.  I try not to analyze it too much. And maybe that's not smart. But at this point I have more than enough to handle with my PA as it is. 

My Nerves

Fifth straight day with the return of the nerve pain. Always on the underside of my left foot. Same timing as last time I began experiencing them, about two weeks after starting weekly Humira doses. Sunday - 3x, all with pain an 11 on a scale of 1 to 10, lasting about five to seven seconds. Twice while lying down in bed, once while walking around a store. Monday - 2x, once while sitting at my desk, once while driving. Pain: 11.  Tuesday - 1x, while walking. Pain: 11. Wednesday - 1x, while lying down. Pain: 9. Thursday - 2x, once while lying down, once while sitting. Pain: 9. This is disheartening beyond words. I need a fucking break.  

At my friend's annual Flag Day party, we walked from her house to the beach to watch the fireworks. I was actually able to make the walk and stand to watch the fireworks, without the aid of the cane. Yes, it was a slow walk, and I didn't go as far down the beach as others did, and sure, there was some pain, but I did it. Even as much as a week ago, I wouldn't have been capable of doing it without the cane.  Trying not to get ahead of myself, but it seems like the Humira could already be making a difference. I haven't been able to stomach the Sulindac much, sometimes not even taking one a day, never mind the two prescribed, so the only thing I think that could be making the difference is the Humira.  

New Challenges When Traveling

Last week was spent in San Mateo, California, for my third week of work at the new job. It was a trip that was moved up at the last minute, amplifying my feeling that I wasn't ready for this trip.

Yes, it was a helpful trip from a job perspective, meeting in person a lot of people I'll be working with from afar. But I could have done without the added challenge of traveling alone while in the worst PA flare of my life.  I'm always at least a little anxious when traveling because I have a fear of flying. But I really dreaded this trip, and actually found myself much more anxious about the physical logistics of the trip than the concept of flying through the air in a tin can. Definitely a first. It's a very humbling and hard experience to realize that you are not entirely capable of doing certain things by yourself, and that you have to rely on strangers to help you. 

Second Verse, Same as the First

Given up on methotrexate, we're going back to Humira, 40mg a week. Part of me thinks I'm insane. But the part of me that's desperate and tired wins out. 

Assuming the nerve issues were not related to Humira (as I've come to 98% believe over the past months), then I know that I tolerate Humira well from past experience. I know to be on vigilant lookout for the nerve issues, and obviously will stop if they start again. 

It's sitting there in my fridge so I don't have to fight insurance for it for a little while.

So here goes...

Added sulindac as an anti-inflammatory I haven't tried before. So far it makes me slightly nauseous, but after the intense nausea from MTX, this doesn't seem that bad.   

Nerve Issues: Instances of Pain

Over the previous week I had two separate instances of the shooting nerve pain, though these times in my thighs. These pains only started making an appearance in my thighs about two months ago.

All of these recent pains are still very mild in comparison to when this all started last fall. They are still very few and very far between. But they are also still there which is very frustrating. 

I've recently been reducing elements of my nerve pain "cocktail" to see if I can identify which ones are no longer needed, if any.  So, this may be an indication that B-12 is needed. This coming week I'm reducing but not eliminating the fish oil and folic acid. I've been on 3x the normal daily dose of each since last October. I'll reduce to 2x the daily dose and leave it at that. I feel I need fish oil and folic acid to combat other PA issues. This coming week I'm also reducing the neurontion (gapapentin) to 200mg per night, from 400mg per night, to see what effect that has on the nerve pain.  

Shared with me by @LivingwithPSA ... I'm still digesting this. I find things like this both interesting and overwhelming and confusing. 

This piece of the article was surprising to me, especially the last part:

"Methotrexate is widely prescribed for the treatment of psoriatic arthritis, yet its role remains controversial and unsupported by persuasive evidence."

and 

"The role of methotrexate remains to be determined, but it’s not looking good at this point," he observed. It surprises me that this is the case given that so many PA patients take methotrexate. Is it purely an insurance thing, that insurance companies usually force patients to try the generic MTX before moving on to the more expensive treatments? In any event, I suppose it makes me feel a little better about my decision to stop taking MTX.  

Nerve Issues: Instance of Pain

Last night I had the shooting nerve pain in my foot. 

It was the first nerve pain I've had in a couple of weeks, and it was not the most common type of pain I've had in the past.

This time the pain was in my right foot, while lying down in bed. This is not a first, but it is certainly not the most common body position and body location that I've had the nerve pain in the past.

Nerve Issues: More Reduction

Stopped taking B-12 this week. So now, out of the nerve pain cocktail I'm down to folic acid and fish oil. However, these are two that I'll need to continue taking to assist in fighting my PA, though most likely I can reduce the amount from 3x the normal daily dose to 2x or just the normal daily dose.  I had no nerve pain in the past week. However, I've been at the point where I could go a week without the nerve pain so that doesn't necessarily mean I don't need the alpha lipoic acid though it's probably a good sign.  

Dose 8 of Methotrexate

Taken a little later than usual, 8pm on Friday night. Took leucovorin at around 6am on Saturday morning.

The short of it is: same old, same old...

Extreme fatigue most of Saturday, this week continuing into Sunday, with the need to take a long nap on Sunday afternoon, too. 

Nausea came back on Sunday (which it seems to like to do). So far, half of the time I have nausea, half the time I don't. I don't believe the leucovorin is actually making a difference -- if anything, the effect is tiny and negligible. 

I'm extremely frustrated with this drug. More on that later.

Nerve Issues: Deductive Reasoning (Sort of?)

Tonight, at my PCP's recommendation, I removed alpha lipoic acid from the nightly regimen of medications/supplements that I've been taking since mid-October to reduce nerve pains that may or may not have been related to an increase in dosage of Humira (probably not, but that's another story).  The nerve pains that were stabbing, intense, and frequent last fall have been greatly reduced, I believe in large part (if not entirely) due to this "cocktail". I am still having the pains on occasion, though, and the neurologist said not to stop the cocktail until the pains have been entirely gone for a month.  Slowly removing elements of the cocktail will, hopefully, identify which pills are no longer needed.

I'm always up for trying to reduce my daily intake of pills!