Tuesday, 16 August 2011

day 15

This was the first morning I slept in since acquiring the rash, and although my hands and feet were still a bit itchy, the itch was a shadow of its former self.  The last areas of the reverse of my forearms had virtually been covered, so the rash was ready to fade from me completely.  It looks worse than it felt, and I was able to shower normally for the first time since the rash began, using hot water.

My hands continued to itch a bit throughout the day while I typed this blog, but only in the manner of pinprick itches.  The reverse of my forearms steadily faded to almost nothing by the end of the afternoon, so I feel confident in stating that this Atripla rash is over.  

It took 8 days to arrive, and 8 days to resolve.  I'll continue to take my antihistamine and steroid medication until August 18 (i.e., day 17), but I fully expect that I'll be able to discontinue all medication other than Atripla after that day.

I'm feeling much happier, healthier, and in control of my health already.


[March 2013 postscript: For those who are interested, my viral load dropped to undetectable levels within a few weeks of these photos and has stayed there.  I work full-time in another city, and get Atripla mailed to a pharmacy near where I work.  My CD4 count has steadily risen and then held at a mean of 900.  All my other blood parameters and ratios are normal and steady.  The only health complication I've had since this rash was shingles down my right arm along several dermatomes, which cleared up after a week, and a few spots of erythema multiforme near both elbows, which appeared a few weeks before that and faded away quickly.  I continue to enjoy occasional vivid dreams around once every week or two, and they're never unpleasant.]

day 14

I woke in an itchy agony as usual this morning - hands and feet again - but knew there was very little left of my body for the rash to affect.  It only had to fill in a few areas on my hips and the reverse of my forearms and calves, while the rest continued to slowly fade away.  My ears were still hot and red, but not itchy, and less hot than before.    

What caught me by surprise was when I opened my mouth: no more coating on my tongue!  I've had a white coating on my tongue since I was a child, and although this has occasionally concerned various GPs over the years, it has proved harmless.  It turned yellow and got thicker a few months after I was infected with HIV, which was more of a concern to me, because I also experienced occasional inflammations in a taste bud or the opening of a salivary gland as well.  So it was quite strange to see a pink, uncoated tongue, for the first time ever [Note: This didn't last, and went back to being yellow after a few weeks. It stayed that way for around a year, although the coating decreased.  I'd taken various treatments for it from May 2011, such as Fungulin lozenges, but they only lessened the coating while I took them, and it returned to "normal" a few days after the end of the course.  By around May 2012, when I got a new job, it has remained it's usual pre-infection pale white and has remained that way.].

I also noticed that the dull toothache I'd had for the past few weeks had disappeared to nothing over the past few days as well.  This gave me even more confidence that my immune system was finally starting to look at other areas of my body than only the cells that were infected with the virus.

My hands would occasionally itch, but nothing that required plunging them into cold water.  The reverse of my forearms were the last areas that looked vaguely active as far as the rash was concerned.  Throughout the course of the rash, the only part of my body that the rash had not covered was my genitals.

There was a certain amount of swelling and itchiness in hands, feet, and shins once I was in bed, but the intensity wasn't the same as the other nights.  I almost thought of putting my blanket over my quilt, which is what I normally do to keep warm in winter.  I also noticed that after dunking my feet and calves in cold bathwater before I went to bed, they stayed cold for a good 20 minutes afterward.  And most importantly, I didn't feel impelled to re-anesthetize them in cold water an hour after I went to bed - again, a first after many nights of this.  

Once in bed, I stayed in bed, and got to sleep around 1.30 am.

Monday, 15 August 2011

day 13

I woke, furiously scratching at my hands and feet again, and prepared for another day indoors with books.  My face was red and warm, although not itchy, it was less oily than before, and showed no spots - it looked as though I'd got sunburnt on the snowfields, as the area around my eyes was unaffected.  My ears were still hot and red.  For the rest of the day, the rash set about filling in any gaps it had left in the previous days.  This meant it started marching actively down my forearms, calves and shins, and working outwards from older, paler spots that had seeded themselves there in previous days.  I cancelled all social engagements for that day, and prepared for (hopefully) my last difficult day.

In truth, the days were always much easier to handle than the nights.  Dozing on the couch or sleeping brought out the beast in the rash, so as long as I stayed awake, kept my apartment unheated, didn't wear shoes or a watch, and kept fairly cool and calm, I didn't have such a bad day.  I was playing a waiting game.  I knew that so far, wherever the rash had been, it didn't reappear, and it had been almost everywhere now, fading steadily in the oldest parts.  I knew it wouldn't quit until it filled all the gaps, but as my hands were now almost uniform with rash and looking a lot less angry, and as the gaps on my feet were steadily being filled, it was just a matter of time before the rash burnt itself out.

In the morning, my forearms and hands, calves, and feet looked like this:

I went back to regularly plunging them up to knee and elbow in the ice-cold water of my bath, leaving them there for at least five minutes, and patting them carefully dry.  

This is what my right forearm and shins looked like later in the day:

I had another night similar to the previous night, but not quite as intense.  The worst of it, as always, was the swelling of my hands and feet within 30 minutes of being in bed, followed by the feeling of being pricked by pins, then itchiness, then heat, then impossible-to-resist itchiness.  I ended up frenetically scratching and rescratching all areas that had active rash on them (hands, feet, between fingers and toes, ankles, skins, tendons), noticing that once I started one scratch, it seemed to signal either via nerves or chemicals for another area to itch to the point it then had to be scratched, and so on.  This time, what was worrying, was that the itch extended up into my right thigh and started on my buttocks.  Was a new front being opened up in the rash's war with my skin - a first salient in a dreaded Reconquista?

This time, I sat down fully in the ice-cold bath up to my stomach and sat there until it felt safe to return to the bed.  At 2 am, this was the state of play:

I fell asleep at around 2.30 am. 

day 12

There's nothing quite like interacting in a lucid dream with an old and significant crush.  That we were visited by swarms of mosquitoes towards the end of this dream didn't detract from such a wonderful and unexpected feeling.  That I woke up madly scratching my hands and feet only slightly detracted from it.

The first thing today was my doctor's appointment.  After I recounted my recent experience and the rash's various manifestations and tendencies since it began, my doctor suggested we take treatment to the next level with a short course of steroids, a stronger topical cortisone cream, and revisit the case in 5 days time.  Just to be sure, she rang a consultant at the Infectious Diseases unit of the Alfred Hospital, which is one of the premier centers in the world for HIV research and treatment, and described the course and manifestations of the rash.  She was advised to take me off the medication.  

Nevertheless, and I'm glad we made this decision, we both felt that it was worth giving it a final shot with the stronger medication.  Because I'd already been through so much, I didn't want to risk going through a different sort of hell with another new medication, have more tablets to juggle in the future, and go right back to square one with something new and possibly less clinically effective.  Sometimes sheerbloodymindedness can be a good thing - it has served me well at work, and has helped me not lose sight of my goal through the course of this rash.  Besides, apart from the rash, it could have been my imagination, but I did feel much better on Atripla than at any time since I was diagnosed.

I was reduced to 25 mg of Phenergan at night, and was prescribed 25 mg/day (50 mg on the first day) of the steriod Solone (prednisolone), and Diprosone topical cream (betamethasone).

I then walked around Acland St, St Kilda, because I needed to get out of my apartment and into the fresh air to lift my spirits.  It was a beautiful winter morning, and I enjoyed a late breakfast there before taking back some items from my favourite cake shop (Monarch) to my apartment.  My feet punished me for this expedition, and looked like this afterwards (this is after I put the Diprosone cream on them):

For the rest of the day, my hands and shoeless feet went on the attack, as if to spite the stronger medication that now hit them.  Every few hours, I settled them down in my bath of ice-cold water, but the rash continued to seed and advance across them.  I had not experienced itchy palms during the day before - this now started to happen, and it additionally felt like pins stuck in them as well.  The rash also began to seed and advance down my calves and forearms, and to a lesser extent in my pelvic region.  I knew tonight was not going to be much fun.

Before I went to bed, my feet looked like this:

ou can see where the band of my sock was, despite virtually no pressure on that area on previous days (I wore very soft, absorbent, cotton socks) - this is how sensitive the skin is at this stage, and how ready the mast cells are to discharge histamine and a host of other chemicals at the slightest provocation.  I can also state that the stronger topical cream had no effect that I noticed, despite a very careful and thorough application before bedtime and earlier that day.

What I endured that night can only be described as a firestorm of itchiness, heat, and swollenness on my hands and feet.  I had to get out of bed and plunge them into the bath on an hourly basis, up to elbow and knee, for a full ten minutes.  Despite that, and despite my best efforts to try to get to sleep before they started up again, I'd find myself uncontrollably and continually scratching, with nails a tenth of a millimeter long, each hand or foot in turn, between digits, on the palms and soles, up and down the ankles, and it never seemed to end.  At its height at 3.30 am, I began to wonder if the consultant at the Alfred Hospital might not have been right after all....and then I managed to get to sleep at 4 am and stay asleep... 

day 11

I woke with my hands and feet in an agony of itching, a yellower tongue, flaky skin over my reddened face, worse fungal flakiness around the corners of my mouth, very red ears and a very red nose.  My facial skin was still extremely oily too, I guess trying to excrete whatever it could.  My hands and arms looked like this:

I showered carefully again, using liquid shower gel and my hand, and prepared for another quiet day at home alone, wearing no shoes or watch, and allowing no heating. It could have been my imagination while I was showering, but my hair felt and looked heathier than it had been in a long time, and hair quality is one of those odd indicators of health.  I also felt, despite only a few hours sleep, lighter and more fluid than in a very long time too - not labouring under some unseen weight, and not feeling "sludgey".

I kept the bath full of cold water.  Every few hours, I sat on the rim and anesthetized my forearms, hands, lower calves, and feet in it.  I dried them carefully, put socks back on, and continued reading a book until the heat and itching started again.  Strangely, the rash seemed to have halted just below the knees, and didn't seem to be seeding much below the elbows at this stage either, which was positive.

Nevertheless, I knew enough after last night's torment that I was going to have another battle of similar proportions tonight, and that I also needed my HIV specialist to see what was going on and perhaps give me stronger medication.

I made an appointment with my doctor for the morning of the following day.  The receptionist advised me to soak my hands and feet in cold chamomile tea in the meantime.  The tea was delivered by a friend, but the soaking didn't have any effect that night.  The soaking in the bath ended up being better because it was colder.

Despite all precautions, the rash spread on my hands and feet, and its torment was worse that night.  Before I went to bed, my hands and feet looked like this:

Freezing, and limbs anesthetized with cold, I'd get into bed and hope for the best.  Sure enough, after 30 minutes, both hands and fingers, feet and toes would swell up, get hot, get itchy, and then get insanely itchy.  After several trips to the bath to calm them down again, after I'd give in to a bout of furious scratching, they eventually looked like this:

I managed to fall asleep at 3 am after both extremities called a temporary truce for a few extra minutes, or I was too physically and mentally exhausted to stay awake any longer.

day 10

I showered very carefully today, in the coolest water I could stand, and did everything very carefully throughout the day so that I didn't put pressure on the skin.  I also tried to stay as cold as I could put up with.

Something that gave me optimism first thing in the morning was that the diffuse rash had begun to fade from my neck and was no longer warm.  Despite finding new regions in my hands and feet during the night (including the soles and palms), it seemed to leave other regions alone, such as my forearms, calves, pelvic region, a patch above the sternum, and my head.

However, since new territory was found in the hands and feet, and since I had also run out of nutritious food, I went out to grab food at the markets and to buy some cortisone cream at the local pharmacy.  This ended up being useless, and probably activated more mast cells through rubbing it carefully on the skin than anything else.

By the end of the day, despite what I knew was coming with my hands and feet that night, I felt slightly optimistic that the places it had originated in had begun to fade.  My thighs, on the other hand, were virtually purple with what looked like old extravasated blood - and they were less hot than the previous night.  A pattern emerged: wherever there were greyish or purplish patches, there was little or no further rash.  So I had hope.  The battle now moved further towards the extremities.

This was the first night I didn't sleep on a bath towel, because I didn't need the wet flannels on my body.  I still needed them continually for my hands and feet, though, and these extremities gave me as much torment through the night as the rash in other parts of the body had, specifically because the fingers and toes would swell up and there's little room for the swelling to expand.  I ended up running cold water in the bath and anesthetising them in it for five minutes, at 1 am and 2 am (remember my apartment was already purposefully unheated, and it is the middle of winter) - they would heat up to burning point again after 30 minutes, but partial relief was at least some relief.

I finally got to sleep around 3 am, more due to physical exhaustion than any abatement of my symptoms.  From now on, my major battle at night would be with my hands and feet. 

day 9

I dressed in loose-fitting cotton clothes, and didn't leave the apartment all day.  My glands were enlarged, my facial skin more oily, and my apartment was cold, but I didn't want to heat it and further destabilize the mast cells waiting to discharge histamine just below my skin.

Nevertheless, by the end of the day, I found that I had so many spots on my trunk that they had all coalesced and formed one mostly uniform red mass.  I went to bed looking like this:

I looked carefully at the rash and saw vague greyish patches on my stomach, back, and in the centers of some of the older spots.  The spots had enlarged as they aged, and many were ringed with brighter red.  You can see this a little more clearly on my arm:

That night was another night of hot hell.  I often didn't know where to put my damp flannels, since multiple parts were burning up at the same time.  After a few hours, my thigh looked like this:

And then the spots crept into my hands and feet, and they too started swelling and burning, and causing me some of the greatest torment so far.  At one point, I had my feet hanging over the end of the bed with wet flannels on them; at another, I had them both on my hands.  At least the heat at the back of my neck had subsided slightly.  As for the previous night, I didn't get much sleep due to the heat management and wet flannel rearrangement every 20 minutes or so.

As soon as 7 am rolled around, I was out of that bed.

day 8 (after starting Atripla)

Although I felt a warm patch over my left pectoral muscle on day 7, the rash really began on the eighth day after I had taken medication (i.e., on August 9).

I was woken from deep sleep at 5.30 am by several hot, red, and intensely itchy spots on both biceps, forearms, and chest, all about the size of acne spots.  They felt like scabies, but as I hadn't touched anyone appreciably in 3 months, and they were distributed over muscular parts, I knew they weren't.  I had been scratching up and down my arms in my lucid dream, and woke up still madly scratching, hoping I could convert the itch to pain and then go back to sleep again.  Instead, the spots got itchier and began to multiply under the cover of darkness as each hour passed.  After showering at 8 am, I went straight onto the internet to revise what I understood about Atripla side effects, and found that the "Atripla rash" was fully expected at around now, day 8.  Why hadn't I been prepared for it?  

Possibly because it had always been passed off as "harmless" in Atripla's literature and by others, and also because I had not experienced a drug-induced urticaria since I found myself allergic to Pinetarsol as a 12 year old.  My childhood allergies (bee stings, bull-ant stings, Johnson grass one spring) were all so long ago, I thought my immune system had relaxed into virtual retirement.  And perhaps it had, but I found my mast cells had reloaded their guns with histamine in the meantime after the entry of the HIV virus in late November 2010, the one foreign entity my immune system singularly failed to detect or alert me to (I experienced no seroconversion illness, despite an overwhelming viral load).  Now that they detected a new foreign agent infiltrating all the same cells as the virus, they weren't going to make the same mistake twice.  (Note: There's a fine line between a drug "allergy" and "side effect", since they both follow similar pathways, so I haven't bothered to differentiate.  Strictly speaking, though, this blog is about a drug side effect - a severe one - rather than an allergy in the classic sense).

I immediately made a booking to see a doctor on the same day (unfortunately my regular HIV specialist was unavailable that day), because I knew I'd need to "medicate through it" if I was to stay on the drug.  As long as I didn't have a temperature, wasn't wheezy, and my skin didn't blister, I knew I'd be safe, but there was no telling how long I'd have to manage this for.  Literature said it took "an average of 10 days to resolve".  

By the time I saw the doctor at midday, thousands of hot, red, and slightly itchy spots covered my chest, stomach, back, neck, and upper arms, though the skin between them was still fairly pale.  They weren't maddeningly itchy - just hot for the most part.  In the absence of the life-threatening indicators described above, we agreed to treat through it for as long as possible.  It looked like a systemic hives-like reaction to the drug.  I was prescribed an antihistamine, Phenergan (promethazine) for the night, another non-drowsy one for the day, Loratadine, and a topical antihistamine cream, although I didn't buy this immediately because there was too much of my body to cover - where to start? 

The rest of the day saw my thighs getting seeded with a plague of hot red spots and my skin temperature increasing (although my internal temperature was normal).  On the advice of the doctor, I took some photos before I went to bed (note: for all photos on this blog, to see them full-size for more detail: right click and select Open in New Tab):

I tried to get an early night at 10.30 pm, but this was the first of my nights of hell.  Within an hour, I was laying on a bath towel in the bed, with two wet flannels on my trunk and some large smooth crystals that would absorb all the heat that was being generated at skin level.  As this was the middle of winter (I live in Melbourne), I had to keep a quilt covering over me while my neck, trunk, and now thighs were burning up.  I lapsed in and out of consciousness all night as I rearranged the damp flannels and quartzes over the parts that were hottest.  As soon as 7 am struck, I was out of bed and into a cool shower.

Sunday, 14 August 2011

days 1 to 7 after starting Atripla (before the rash started)

This blog documents my rash several days into it, so the first few posts will be retrospective while I catch up.  I took the first dose on August 1 at midnight, and went to bed after an hour.  Some buzzing before sleep, but no dream. 

Day 1: fatigue as expected, as my system started to adjust.

Days 2 and 3: very fatigued, and glad I wasn't working (note: I would highly recommend anyone starting medication to take a month off work in case there are any problems while your system adjusts.  You can then work through them at your own pace without having to deal with fatigue, make excuses for multiple visits to your doctor, cover up a rash, etc.  Remember, this is very strong medication which will pervade your entire system - you owe your body the rest and attention it will need.).  The "cinematic" dreams came as expected, but they were not unpleasant.

Day 4 saw fatigue and dreams fade, and by day 7 I told a friend that I thought I had escaped all the side effects.  How wrong I was!

why I started this blog

I decided to start this blog for a few reasons.  First, I wanted to document the course of this rash, which has taken me by surprise with its intensity, and caused me some of the greatest torment in my life so far.  When I searched the internet for stories of those with similar experiences, I only found one account similar to mine here, but there was no conclusion, and no photos.  Most people who have described their Atripla rash on the internet have experienced nowhere near what I have, so this is something for anyone who will in the future: you're not alone, I've gone through your hell too and battled it to a conclusion. 

Second, I wanted a photo repository to show my doctor who may choose to add some of the images to my case notes.  It may also educate other physicians that their patients may be willing to go through extremes in order to stay on their drug of choice, and that they should not be too quick to dissuade them from it if it looks bad in the first few days.

Why go through this just to stay on Atripla?  It was hard enough to make up my mind to start on life-long medication in the first place, because I knew that if I stopped, I could never go back to being unmedicated.  I was diagnosed in Jan 2011 with a viral load of 550,000 copies/mL and a CD4 count of 514 x 106
/L (normal range: 500-1500).  Five months later, although my CD4 count had risen to 614, my viral load was 330,000, which for me was unacceptably high.  My glands were still enlarged since March, I was suffering a host of minor immune-related complaints (e.g., scrapes took a month to heal and left a liverspot scar; yellow coating on tongue; acne progressively worse; occasional gingivitis and taste bud inflammations; feeling of general "sludginess"; and psychologically feeling I wasn't fully in control), and I was very aware of the dangers of chronic inflammation and hidden CNS damage.  Medication was not just an option - for me, it was a necessity.  After researching the options, Atripla seemed to show the best results compared to other drugs on the market, was proven to be good for patients with high viral loads, seemed to have minimal side effects, and was still the only single pill on the market.  Starting Atripla was a huge decision for me to make because it was voluntary - this is why I want to continue with that choice if at all possible.

The other reason I started the blog is so that those who think the "harmless skin rash" side effect mentioned in Atripla literature is a walk in the park can think again.  It probably won't be experienced to this intensity with others new to the drug - but then again, it might.