Tag: immunosuppressed

I have an infected ankle (but it is getting better)

I had a bug bite, or something, that seemed like it was getting worse. Two days ago, I had some pain walking in the morning, and I tried to lance it that evening, but only got some watery blood… no puss.

I lanced myself, but only got blood

And yesterday morning I woke up just after 8am from a dream in which I broke my ankle. And my ankle was throbbing in pain. I felt absolutely terrible. I got up to go to the bathroom and take some tylenol/advil and i could barely walk. really. i couldn’t put any weight on the bad ankle. I was a mess. When 9am hit, O called my dermatologist for me (I have an appointment on monday anyway…) and they told me my dr wasn’t in, but to just come in and one of the doctors would see me. We ended up taking a car in for an inspection.

When I got there, the doctor looked at O and me and joked “You two sure look like you’ve had a rough night.” Later, when she realized I was on IFN, and had been for a year, she apologized profusely. I told her its good to get a reality check sometimes…

She pushed on the welt/bite, and decided that there was no pustule (which I think I had already proven the night before.) Put some topical antibiotic on it. And gave me a prescription for antibiotics. I spent all of yesterday and most of today in bed with my foot elevated. I’m just now starting to feel a little bit better. I can walk around a bit without intense pain.

getting better

I think it got so bad overnight because I injected that night. That injection caused my immune system to temporarily dip even further below its already immunosuppressed state.

Lying in bed for the last two days is all too familiar. Last spring I spent 6 weeks lying in bed while recovering from my surgeries. It was a little offputting to realize I was back in the same place. Thought I knew it was only temporary.

Likewise, me telling the dermatologist that I had been on IFN for a year made me realize that, in fact, I started my interferon June 16, so in ten days, I actually will have been on the drug for a year.

Reiter’s Syndrome

I went to the dermatologist today.  Everything checked out fine.  All my moles are (still) normal.  All the new lesions are also normal, and have a name: Reiter’s Syndrome. And when it shows up the lesions are called psoriasis.  This includes the big lesions on my tongue. A quick google search reveals an academic paper linking Reiter’s Syndrome to IFN (that costs money, and arrives by mail?), and a Reagan era NYTimes article discussing AIDS and Reiter’s syndrome.  It is unclear to me how much of this science is still accurate (it was 1987, and they didn’t really know that much about HIV/AIDS) but they argue that HIV suppresses one part of the immune system and allows the other part (the Interferons) to flourish:

”AIDS patients have high levels of interferon and it is known that when we give interferon to patients with cancer they develop psoriasis,” Dr. Winchester said. ”It is possible that high levels of interferon may induce both psoriasis and Reiter’s syndrome.”

The presence of Interferon, whether as a result of HIV/AIDS or a result of Interferon treatment, results in a psoriasis and Reiter’s syndrome.

I don’t have HIV/AIDS, but I do have one of the most common side effects of the disease, because the two share the same mechanism – interferon.

Tongue Nasty (NSFW?)

tongue nasty (NSFW?)

This is dead skin on my tongue. The pink part in the middle is where i scraped off some of it, exposing the flesh below. It is pretty revolting. The most bizarre part is that most of the patches have a ‘breathing hole’ — a hole in the middle that extends through to the new skin below. I hope my molting finishes soon.

I scraped at it a bit, and pulled off a bunch of clearly dead skin. But the next day it was back (and hurt more.)

A list of Side Effects

A list of Side Effects that I have to tell my various doctors about.  Compiled with O’s help.

  1. muscle aches (strained bicep)
  2. joint pain
  3. Finger nails are not growing in thick enough
  4. lip and tongue cuts
  5. infected lesions in ear canals
  6. nose crusties
  7. bloody noses
  8. nose infection/pain
  9. memory problems (persistent)
  10. slurring of speech
  11. loss of balance/falling
  12. ongoing lesions (legs, arms)
  13. hair loss
  14. libido
  15. irritability + spaciness VS indifference + apathy
  16. loss of appetite
  17. broken tooth

More Drugs Please

I went up to the dr yesterday, and got my FMLA papers signed.

The other goal was to get some drugs to help with the dysesthesia attacks, as well as show him all of my lesions and bleeding sores, and other gross things.  I mentioned my dermatologist gave me something for my lesions which had helped a little bit, and another which didn’t.  He immediately asked “were they steriods” and i said I didn’t know, and he kind of got interogative with me, asking again “well, you should know if they were steriods.”  And I immediately went into a full blown dysesthesia attack.  its that confrontation, that conflict, that interogation, that possibility that I (the expert) might have made the slightest mistake.  In a healthier state, I could have had it roll off my back.  But not now.  The slightest confrontation over something as simple as a scheduling confusion sends me into dysesthesia land.  Which is why it is close to impossible for me to teach on the IFN.  I tried a little bit at the studio, and I just end up clutching my side shivering in a fetal position.

So in a sense it was perfect timing.  He actually got to see it happen.  And see that it was real.  (Maybe my subconscious produced it for him…)  He immediately went into support mode, telling me I was doing well, and that if I wanted I could take a week or two break.  But I dont want to take a break.  It just will delay the overall end point.  I only want to take a break if I’m too sick to take the drugs.  RIght now my WBC is at 2.5, and holding steady there.  It dipped to 1.8 after Banff, but has been steady at 2.5 otherwise.  3.5 is the low range of “normal” so I am still immunosurpressed, but I’m hanging in there.

If the goal was to get drugs, that was a success.  He gave me a prescription for Atarax which is an antihistamine.  Now that I look closer, it is just a higher potency of the over the counter drug I was already taking (Zyrtec). And it is ‘sedating’ so i’ll be more stoned and sleepy.  I’m supposed to give that two weeks, and if that doesn’t take care of the dysesthesia, I start taking Neurontin which is actually an epilepsy drug, which is now widely used to deal with neurological pain.  Frankly, the closest thing I can describe my attacks as, are seizures: I am not totally out of control of my body, but I loose a lot of control to the pain, I go fetal, and afterwards I am disoriented and kind of stoned.

The other thing that happened (in the midst of my attack, me trying to breathe and do meditation on the paper on the exam table, while my doctor keeps saying “you’re doing great”) is that I got my FMLA papers signed.  My “doctor’s note” so to speak.

We calculated out my treatment schedule, and if I take *no* breaks in treatment I will be done the last week of July 2009.  But considering I’ve had to take 4 weeks of breaks in the first 17 weeks of self injection, it is unlikely I will make it through the remaining 31 weeks of self-injection without having to take a break.  So realistically, we’re talking an end of August beginning of September final injection.  As the drug takes some time to work its way out of my system, my Dr has designated a 1 month recovery period, so he has me coming back to work after September.  E.G. October 1st.  I will more or less miss the first 5 weeks of the semester.  I’m working out the details of what that means.  sitting w/ my dr and counting out when I would be done forced all of this.  frankly i was very much in denial of the end date.  it seems so far away, i felt better not thinking about it.  but because it runs up against the fall semester, it is important to address

Macro photos of lesions

Here are some gorgeous macro photos of the lesions that KM took w/ his Canon D5 and a macro lens.  I needed to send them to my naturopath so he could evaluate what to do about them.  His solution: Thuja orally, and vinegar on the lesions.  I haven’t been able to locate the Thuja yet, but the vinegar seems to help.  My eyes are worse, though.  Skin falling off, and open raw skin at the folds.

lesions01

lesions02

lesions03

lesions04

lesions05

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A new day, a new side effect

So every few days my side effects change. For a while it was aches and pains, then we seemed to get that under control. Then it was the pins and needles, which are still my number one most awful side effect (bad episodes each of the last three days). But I have it more under control. For a while I couldn’t eat because of the lesions on my tongue, and for two days I even had trouble talking it was so bad. Then it was the lesions on my hands, which are easing off (i put vinegar on them). And the “sore bottom” which I soak as often as i can.

The latest are my eyes. The skin around my eyes is simply falling off. Flaking off in painful chunks. I have cuts/lesions at the creases and folds below my eyes. And crazy white flaky skin. It hurts, and putting moisturizer on it seems to make it hurt more (temporarily) and not really solve the problem. But if any of this is a pattern to be repeated, the eyes will be better by next week, and it will be something new.