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Ed Dewke's Rebound Diary
Part 2 — March-April, 2004
 

(revisit part 1)

Tuesday, March 9, 2004 - Arthritis remission short-lived  

Friday, March 12, 2004 - T-cells still compromised, Soriatane on my horizon

Wednesday, March 17, 2004 - First dose of Soriatane 

Thursday, March 25, 2004 - First Soriatane side effects

Sunday, March 28, 2004 - My grisly foot 

Monday, April 12, 2004 - Soriatane needs help

Friday, April 23, 2004 - Long ways from "cured"

Friday, April 30, 2004 - The jury is still out

*****

Tuesday, March 9, 2004

Arthritis remission short-lived  

The miraculous improvement in the psoriatic arthritis in my right knee didn’t last long.  The Monday after my outing with the granddaughters was thrilling, Tuesday was good, too, but by Wednesday the PA had forgotten about whatever happened to appease it.  By Thursday I was hobbling around as though the reprieve had never occurred. 

The one good thing about the experience was switching from Tylenol/Ultram to ibuprofen.  Now, two weeks later, the ibuprofen still quells the pain better than the Tylenol/Ultram had.

I had mentioned some time ago that the switch from clobetasol propionate to betamethasone dipropionate had improved my lesions.  In a way, that remains the same.  They are less inflamed — pink instead of red — but they are still flaking.  I also think the growth of the lesions (from dots to islands to continents) has been temporarily interrupted.  I’m about 20 grams into the betamethasone, so it’s entirely possible I’m still enjoying the “shock” of this “new” topical on my skin.

The only lesions that have worsened over the last couple of weeks are those on my hands and fingers.  They, too, are less red, but they have grown, they flake, and they crack.  The skin has become so thick on my fingers that it feels like I’m wearing gloves.  If I curl and squeeze my fingers into fists I can actually watch the skin crack in places (I don’t do this often). 

Friday, March 12, 2004

T-cells still compromised, Soriatane on my horizon

My CD+4 count continues to rise but at a snail’s pace.  I’m now 181, less than 20 points better than a month ago.  At this rate it will be a year before I return to the bottom of the normal range (450), so those vitamins my GP told me to take better be building momentum.... 

I must do something about this rebound and it’s obvious from my blood tests I won’t be trying another biologic any  time soon. 

I’ve probably got another week’s worth of betamethasone dipropionate, then I return to the clobetasol propionate.  So far the betamethasone has been keeping the lesions pink and the flaking reduced but not altogether stopped.  The appearance of new lesions seems to be slowing on my legs and arms.  This is not true for my hands, though.  The lesions are spreading now over the backsides of my palms and on my inner wrists.  The fingers on my right hand have  wrap-around lesions up to the second knuckle from the nail (first knuckle for the thumb).  On my left hand there are solid lesions up to the first knuckle from the nail, then spotty lesions further up on three of the four digits.

I’m growing more lesions on my back and buttocks, too, but these are hard to discover and hard to track.  Some are impossible to goop up.  Thankfully, most of these never itch — the exception being lesions on my butt, which will sometimes itch fiercely.

As far as the psoriatic arthritis goes, it remains prominent only in the right knee.  (It’s very visible as swelling on the pinky finger of my left hand, but that doesn’t hurt unless I squeeze it.)  The only time my right knee is not uncomfortable is when I’m sleeping.  All the rest of the time it radiates one or both of two kinds of discomfort:  the first is the typical arthritic ache which is just a notch above the discomfort of a stiff joint.  It makes you want to bend the knee because this ache feels like it could be “worked out.”  The second kind is a prickly pain deep in the knee.  It’s difficult to describe.  Perhaps the best analogy is a bunch tiny needles pricking you, then stopping, then pricking again, sometimes very quickly, sometimes slower.  Either the ache or the prickly pain is constant when I’m awake.  Sometimes the ache can be relieved by elevation, wrapping, heating or — the most drastic — hypodermic aspiration (sucking the fluid off the joint with a big syringe) — but all of these provide temporary relief, at best.  The very worst arthritic pain comes when the joint is stressed.  If it’s a traumatic stress the pain is instant and dramatic.  Some accident that would hurt a normal knee is only exacerbated if the knee is arthritic.  If its an accumulated stress (over-exercising) the stress pain will come later, sometimes building gradually and fading gradually.

It’s time to try Soriatane. Nothing I’ve read suggests Soriatane will help the psoriatic arthritis. But it’s the last systemic medicine I haven’t tried for the skin P, and I’m sure it will be another 6-10 months before my derm will consider allowing me to take more methotrexate or cyclosporine.

Before I call my derm I’m going to review all the correspondence at FlakeHQ about Soriatane (a.k.a. acitretin ... there’s a long evening of reading) and do some more web surfing.

 

Wednesday, March 17, 2004

First dose of Soriatane.

 

Thursday, March 25, 2004

First Soriatane side effects

Well, if I can believe what I’m seeing, my rebound has stopped and my lesions are improving.

The Soriatane?

I’ve moved back to the clobetasol propionate for once-a-day gooping, but the changes in lesions are different than I’ve ever seen come about from topicals, so it must be the Soriatane.  One other piece of evidence suggests this:  A common early side effect of Soriatane is peeling palms on hands and feet.  Check this out...

This picture was taken this morning.  My hands and feet have been this way for about a week now.  (My grandchildren are pretending I have a contagious flesh-eating virus.  This has curbed the hugs to which I’ve grown accustomed.)

I find this rapid change flabbergasting.  Backing up a little, I noticed the lesions thinning (growing flatter) and the redness lightening (turning pink) as early as Friday of last week — after only 3 doses of Soriatane.  Nothing I’ve taken — including methotrexate and cyclosporine — has worked this fast.  But I have to keep reminding myself, Don’t drown in paroxysms of joy, Ed!  If this were it, if where I’m at right now is the best I’m going to get on Soriatane, it will be unsatisfactory.

When I picked up the prescription last week I asked my pharmacist what I’d be paying for it if I didn’t have insurance (my co-pay was $25, which is the highest).  She said, “$400 for a month’s worth.  Thirty capsules.”  I was startled but not shocked.  Consider the Enbrel I tried last year:  $1,200 a month for the regular dose, $2,400 a month for the double dose.  And Enbrel didn’t work for me.  At all.

Years ago, before I tried any of the systemics, this time of year would have meant a flare-up for me.  The change of season from Winter to Spring and then, again, the change from Fall to Winter, had always brought on a P flare.  This is one of the reasons why I’ve always had a hard time accepting the argument that P has nothing to do with allergies.  I grew up allergic to all sorts of things, but hay fever was at the top of the list.  Budding plants and falling leaves did a number on my sinuses.  When, at 39, I started to flake, it was Springtime in the high desert of Colorado.  All the fruit orchards of Grand Junction, Colorado, were in full bloom and so was my hay fever. 

Throughout the 90s my allergies and my P waxed and waned on the same climate-tuned schedule.  Right now my sinuses are a mess, yet my P rebound seems to be subsiding.  To what else but the Soriatane can this be attributed?

I keep my fingers crossed and a piece of knocking wood within reach.

 

Sunday, March 28, 2004

My grisly foot

It would be convenient to blame this foot on Soriatane, but I think the drug is only partly to blame.  This foot has P lesions on it.  In fact, at this stage it’s damned near all one big lesion.  The yellowish thickened skin is the fast-growing stuff, suggestive of plaque P.  It either thickens and turns into calluses, or it loosens and begins to feel like a leather sock.  The thickened stuff is on the balls of my toes.  The loosened stuff is in the arch.  Some of this I’ve peeled manually, but whether I do this or not, every evening when I remove my sock it is full of scale.

Clara informed me the other day that at night, if I happen to touch her leg with the bottom of this foot, it invariable wakes her and “sends her through the roof.”  I’ve checked the ceiling in the bedroom and she’s exaggerating about that second part.

I think there continues to be a thinning of plaque lesions generally and continued lightening of the color of the lesions.  However, I do notice that my largely in-door existence tends to fool me about the color of the lesions.  When I do get out under the sun, the lesions on my hands appear much more pronounced — more red. 

And I must qualify my enthusiastic claim of all-‘round improvement.  I noticed yesterday that the scalp P and ear P appear to be worse. 

Monday, April 12, 2004

Soriatane needs help

While coddling a baby and watching older grandchildren hunt Easter eggs hidden rather poorly in my back yard yesterday, I noticed for the first time that my lips were peeling.  Soriatane side effect number two.  But I’m getting ahead of myself.

I’ve almost finished my fourth week on Soriatane and the really exciting news is that signs of healthy new fingernails are peeking from beneath my cuticles.  There is a chance that by my West Coast trip at the end of July I may have nearly normal fingernails!

No skin lesions have disappeared, but they have all become different under the Soriatane.  Two weeks ago the color had already changed from crimson to salmon, and they had become thinner, but they still tended to scale about the same as before.  Now, however, while the color is still salmon, the scaling has changed completely.  You can’t really call it scale anymore.  Now it is peeling.  Just like my lips, my palms, the bottoms of my feet:  Thin slivers of skin that peel off by rubbing.  (The “slivers” are decidedly thicker on the soles of my feet, and they don’t come off so easily.) 

A little over a week ago I stopped using high-potency topical corticosteroids and started applying hydrocortisone valerate to the lesions once daily.  This is a mild topical, prescribed for use on face and groin where the skin is thinnest (also sold as Westcort Cream).  I use it on other lesions when I believe they are subsiding.  This time it didn’t work.  Evidently Soriatane does appreciate all the help it can get.  With me, the help came as high-potency topicals (betamethasone dipropionate and clobetasol propionate).  When I stopped using those, Soriatane was no longer up to the task.  My lesions enjoyed about a week’s worth of fresh rebound. 

But I wasn’t about to give them more celebration than that, so I refilled my prescripts for the higher potency topicals and have, for several days now, been gooping away with clobetasol.  Already the lesions are withdrawing again.  Back to salmon colored — and now the “peeling.”

This shouldn’t surprise me — that Soriatane requires help to work well, at least initially.  I’ve read that many people use light therapy for the assist.  Light therapy seems to be something my skin won’t endure, so I will stick with the goop.

Something associated with this new “peeling” that’s replaced my typical flaking is a pervasive, all-over itch. I have this back scratcher — I’ve had it for years — and in the last few days I believe I’ve nearly worn it out.  There doesn’t seem to be an inch on the surface of me that doesn’t itch.  I can’t write about it anymore because it’s only making it worse....

I just located a note to myself in the mess I call my desk.  I quote:  “For rebound diary.  Don’t forget chills and fatigue.”  Yes, I remember now.  That was a couple of weeks ago.  I’m glad I made myself a note.

These are side effects of a serious flare for me.  I get cold and experience chills.  I become fatigued half way through my day.  Someone mentioned on PsorChat that these are symptoms of a compromised immune system.  P is an immune system disorder, but there are many other immune system disorders, and I guess chills and fatigue may be symptomatic of all of them.  (Considering the state of my own immune system, I wonder how I manage to get out of bed at all.)

To the extent of my understanding of the science, I am a fervent evolutionist.  My mind is constantly sensitive to situations that seem to make sense to me from an evolutionary point of view.  That chills and fatigue are symptoms of a compromised immune system fits this association in my thinking.  Both of these “feelings” slow us down.  When we are slowed down (or slumbering, which is the goal of fatigue) we are less likely to get ourselves into situations that will challenge our immune system. Less likely to be wounded. Less likely to encounter infection.  As I well know, it takes time for an immune system to right itself.  Chills and fatigue must be nature’s way of making us give ourselves the time to get well.  We are at that stage in our own evolution as life forms that we can consider this, but our consideration is irrelevant.  Whether or not we had the capacity to think about it, the chills and fatigue would help ensure our survival.  I find that thought comforting.

 

Friday, April 23, 2004

Long ways from "cured"

Am now in week 6 on the Soriatane.  The only thing that’s “irrefutably evident” is that my rebound flare has been stopped.  I’m by no means in remission, but everything has settled down.  This is what it feels like to have widespread psoriasis on a day-to-day basis. 

Flaking remains a significant problem on my scalp and in my ears.  As I type this I’m letting Neutrogena T-Gel shampoo dry on my scalp, in half an hour or so I’ll jump in the shower and wash it out.  Then, before I comb it and let it dry naturally, I’ll apply Olux Foam (clobetasol propionate) and hopefully it will get better.  Though the scalp scaling has been bad, it’s not been bad enough to compel me to use overnight occlusion.  (For one thing, the “scalp cocktail” in my medicine cabinet, which is compounded to be occluded over night, is probably four years old.  I’m afraid to even open the jar.)

For the ears I apply the fluocinonide solution when I can remember to.  Often I don’t remember my ears (because they’re not itching) until I’m somewhere else.  I noticed yesterday the scale buildup on the outer ear is getting bad.

Almost all the body lesions have stopped scaling.  Those that itch and get scratched still scale.  I was told long ago, and have built up plenty of evidence of my own to support it, that no medicine will get rid of a lesion that’s regularly scratched (i.e., abused).  This is why I’ve always hollered that handling the itch is the first step towards any effective regimen.

Most of the healing lesions turned salmon colored a few weeks ago.  That’s as good as they’ve gotten.  Some days they look red again.  It’s as though the Soriatane, coupled with the topicals that I still use every day, have reached an impasse against the Beast.  Neither side can make headway.  It’s a parry in one direction followed immediately by a parry in the other. 

All of which brings back many memories.  None of this is new.  Well, one part of it is new — the $400-per-month bottle of Soriatane pills. 

As far as I am concerned, I’m at the halfway point in my Soriatane trial.  If I were in complete remission right now I’d be surprised.  Even my old standbys, cyclosporine and methotrexate, wouldn’t have me cleared in a mere 6 weeks.  So I must be patient. 

Next week I’ll close out the Rebound Diary in order to get it posted at FlakeHQ in May.  That means the Soriatane story won’t be over.  I’ll know by the July-August update if Soriatane and I are going to get along for the long run.

 

Friday, April 30, 2004

The jury is still out

This is to be my last entry in my rebound diary for 2004.  I’m in the middle of week 7 on Soriatane and experiencing little difference over week 6 (last entry). Time to summarize:

It was never my or my derm’s intention to start me on Soriatane when, last December, I began the cyclosporine weaning process.  I’d been enjoying a remission on cyclosporine for several months after my dismally failed attempts to get any improvement on Enbrel for the first six months of 2003.  No, the intention was to start an Amevive course in January. To do so I wanted to be relatively clear of lesions but taking no other systemic — which is why we started tapering off the cyclo before the end of the year.

But over the December holidays my rebound started, so I knew I would not be clear for my Amevive start-up.  Then we learned there could be no Amevive start-up when preliminary blood tests in January revealed extremely depressed CD+4 activity in my lymphocyte cells (T-cell variety).  This is the type of white blood cell whose activity is affected by Amevive to slow or stop P lesions. My levels were dangerously low (at the point, in fact, at which HIV victims become full-blown AIDS victims). My health care providers shifted their concerns from starting me on Amevive (now out of the question) to recovering my immune system.  Furthermore, the logical question of whether Amevive would have any effect on my skin P seemed to be answered in advance by this circumstance.  If Amevive was supposed to quell P lesions by suppressing CD+4 activity, and I was experiencing a P rebound without having near-normal quantities of CD+4 in my system, why should we expect Amevive to have any affect on my P?  If my entire immune system — including the full family of T-cells — was compromised, this might have been why Enbrel hadn’t worked for me in early 2003.  One suspected contributing factor to my abnormally low levels was a therapeutic radiation regimen I went through in 2003 at the same time I was on Enbrel.  We’ll probably never know — because the appropriate blood tests weren’t performed at the time — but the radiation may have knocked out enough white blood cells to explain the persisting low T-cell activity counts.  Regardless of the lack of reliable evidence over 2003, I harbor a strong suspicion that my P is not primarily driven by T-cell activity.  Enbrel probably didn’t work because the stuff it was trying to suppress was already severely suppressed in my system.  Yet I flaked.  We knew in advance specifically what Amevive was going to suppress and that I had so little of it Amevive would probably have been dangerous or, at the least, superfluous.  Yet I flaked. 

So, me and the biologics had to part ways at the beginning of 2004.  And there I was, rebounding mightily, every waking hour forgetting a little more of what life with normal skin is like.

The only thing left to try was Soriatane.  In March I started taking it.  In the very first week I knew something was going on.  Lesions were thinning and becoming less inflamed.  In fact, it seemed to be working faster than any other drug. 

Soriatane’s side effects are what most users like to talk about (read correspondence in FlakeHQ).  For some they are horrendous.  The most common are:

  • peeling palms and soles of feet  
  • severely chapped lips
  • hair loss

Less common things include liver anomalies and severe joint pain.

For women of child bearing age, the absolute worst thing about Soriatane is that it causes birth defects.  As a result, the drug is simply a no-no for women intending to have babies within a few years of taking the drug.

Despite this list of side effects, Soriatane is considered one of the safest systemic drugs for P because it has the least effect on liver or kidney function.  All the common side effects are supposed to be temporary (mostly overcome in the first 12 weeks of administration) and thereafter, if Soriatane is working to the patient’s satisfaction, unlimited continuance is supposed to be tolerated better than long-term use of either methotrexate or cyclosporine.  (Both these others become toxic over time.  Methotrexate [MTX] causes liver damage; cyclosporine causes kidney and/or liver damage.)  As with all systemic drugs for P (so far) periodic and specific blood tests are recommended to ensure the drug is not adversely affecting anything.

At 7 weeks I’m far from satisfied with the results brought about by Soriatane so far.  I’m pleased by the progress, but if things don’t continue to improve I won’t be happy.  But I am optimistic.  I said at the onset I would give Soriatane 12 weeks before I determine if I continue taking it or not.  That deadline is 5 weeks away.  A lot happened in my first 5 weeks on Soriatane.  It wouldn’t take that much more to make me happy by the end of week 12.  So I keep my fingers crossed.

This diary started out as a way to keep track of my worsening P.  Almost every moderate to severe flaker experiences rebounds, often brought on by stopping or switching medications, but also brought on by other things including trauma and climate. I define “rebound” as a rapid worsening of P.  P normally waxes and wanes and every time it’s in the “waxing” stage I wouldn’t call it a rebound.  I limit my use of the term to those occasions when every morning you can tell your P is worse; where, in a week’s time, lesion activity becomes shockingly worse. 

What happens to your skin is only part of it.  And, if you have P-arthritis, even joint pain rebound is only part of it.  The worst of it is psychological and social.  I don’t think any human being could go through it without depression and stigma.  In other contexts I’ve referred to rebounds as “the Job effect.”  (In reference to the Biblical character whom God and Satan decided to make the subject of a gruesome bet.)

In this diary I’ve recorded some of the aspects of a rebound that I had forgotten.  I didn’t record them all. While the diary was in progress I took some time, one evening, to re-read the entire “Don’t Say This” collection at FlakeHQ.  Reading that list from the bottom up convinced me that many of the anecdotes recorded there came from people who were rebounding when those things were said.  Most of us are never more sensitive and stigmatized about our P than when we are rebounding.

The last time I had a rebound I had four grandchildren, all under the age of 6.  Now I’ve got 7 grandchildren, four over the age of 6.  I’ve learned I can gauge the influence of my P condition on those around me by paying attention to the reactions it engenders from these older grandkids.  Kids over the age of 6 tend to notice the same things adults do, but they are considerably more prone to blurt out their reactions to whatever it is they see.  Propriety is not a child’s strong suit.  These older kids have all noticed my P in a big way since the onset of the rebound.  Most of what they blurt is intended to tease me and I take it all in that way:  “Papa, you still have that flesh-eating virus on your hands.”  “Well then,” I’ll retort, “You probably wouldn’t want me to ... squeeze your knee!” which is exactly what I lunge to do at that second — and they squeal with delight, not fear.  But they noticed not because they were looking for something to tease me about, but because they could not help but notice.  Others are like that, too.  And we know they are noticing whether or not anything is said.

Eventually, before my rebound could play through its natural course, I caved in and said “yes” to Soriatane.  I’ll never know, now, how long my rebound would have lasted, just how bad it would have become.  That’s all right.  My inclination towards inquiry, my thirst for knowledge, does not require living completely through a rebound au naturel to be satisfied.  I’ve lived with P long enough to say, without excuse, “let’s try to fix it — as soon as possible.”  In that, I’m sure, I’m not alone.  -Ed

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