And then I turned blue. Dapsone induced Methemoglobinemia

Hello friends

A month ago I had my first trip in an ambulance and my first time in ICU. I'm pleased to announce that the sound of the siren is actually not loud when you're laying in the back strapped down and sporting an oxygen mask.
Here's how that happened.

I was on my last course of antibiotics for treating my Chronic Fatigue Syndrome. I started this cycle in December last year and had brought the last 3 month's worth of meds with me to Mauritius from South Africa.
In the last combination I had to take Tetracycline and Dapsone together. Dapsone is used for Lupus and skin infections as well as Malaria. I was taking it for the Malaria aspect.
I started the course on Friday the 7th of September and felt pretty gross and tired, as is usual on one of these week long antibiotic courses. By Sunday I noticed I was maybe looking a bit blue and I was quite out of breath and got tired quickly. I took some photos and decided to just keep an eye on it.

Y2K is jealous of those blue lips. lol
I researched my meds and saw that Dapsone could make you turn blue, but I didn't think it was a problem yet. On Tuesday I spoke to my sister and was so out of breath that she actually cut the call short saying I need to tell my doctor and get it sorted.
I spoke to my doctor and she said, well, it's very rare but just go have it checked out. You could have a reaction to Dapsone called Methemoglobinemia.

"Methemoglobinemia is a blood disorder in which too little oxygen is delivered to your cells. Oxygen is carried through your bloodstream by hemoglobin, a protein that’s attached to your red blood cells. Normally, hemoglobin then releases that oxygen to cells throughout your body. However, there’s a specific type of hemoglobin known as methemoglobin that carries oxygen through your blood but doesn’t release it to the cells. If your body produces too much methemoglobin, it can begin to replace your normal hemoglobin. This can lead to not enough oxygen getting to your cells.

Symptoms of methemoglobinemia may vary depending on which type you have. The main symptoms are:

-Cyanosis, which describes a bluish color of the skin, especially the lips and fingers
-Chocolate-brown colored blood
It’s because of cyanosis that some people call methemoglobinemia “baby blue syndrome.”

As methemoglobin levels increase, symptoms continue to get more serious. These can include:

headache
shortness of breath
nausea
rapid heart rate
fatigue and lethargy
confusion or stupor
loss of consciousness"
Sourcemethemoglobinemia

I called my husband and said we needed to go to the doctor and get it checked out. They're probably going to put me on Oxygen and give me a drip and then we can go home, but we can't leave it because it's pretty serious if you don't get it treated.

So off we went to the hospital around the corner.
Figuring that the emergency room would be able to point us in the right direction, I went up to the counter and said "I'm having an allergic reaction to antibiotics and my Dr said to come have to checked out. Can you help with that? Also, I'm a bit blue"
The Dr pointed me to a bed and they got me hooked up to a blood pressure monitor and some oxygen. Pulse oximetry read 85% and it didn't respond to the oxygen. Pulse 127.

The Dr got hold of a specialist and it was decided that I should be transferred via ambulance to their sister hospital in Moka, about 45 km away, right across the highway from where Flash was still in quarantine.
Lynton signed some papers, paid the bill and went on ahead.
" Should I follow you?"
Dr " No, you go ahead and meet us there. We will be going fast and you can't follow"
This was true. It usually takes about 35 mins to get to Moka from Grand Baie.
We made it there in 20. It was pretty cool to see the trucks and buses moving out of our way as we drove through Port Louis city traffic . There was a bit of a gap in the window treatment where I could see outside. And I like I mentioned, the siren is quite soft inside the cabin. I had a nurse next to me who kept checking that I was okay, and the oxygen was going at full speed.

Time for a side road: So, in the preceding 2 maybe 3 weeks I had noticed that I would get chest pain and super tired whenever we visited good old Bagatelle mall in Moka which is on a mountain. There is a 300 meter altitude change from the ocean where we live to where the hospital was I was about to go to. I did mention this to them and hey, I'm already in an ambulance but just so they would know.
I could feel that climb as we were going up the hill. It hurt. It had been painful to go visit the cats but they're my babies, so what can you do? Luckily their kennels were a bit lower down on the other side of the mountain again, but man, I dreaded that drive.

True to form when we drove up and past the mall everything was hurting pretty badly and I told the nurse I was going to faint, just so she knew. In my defense I was doing all I could to relax, breathe through it but it was not helping at all.
Shame, she said " We're 2 minutes away from the hospital.. it's right here. just hold on"
I did black out a bit and then we were at the hospital.

Lynton arrived maybe 5 mins later. ( he had a head start, remember?) I was a little bit out of it by then.
From there I was taken to ICU for observation. What an experience. The staff were brilliant and thankfully everyone in ICU was doing ok so it was relatively calm throughout my stay. A machine took my blood pressure every 15 minutes for the first 24 hours. Fun fact about a blood pressure cuff, loose is not better. It needs to be snug or it will inflate it's dear little self until it gets a reading which means a whole lot of pain for you. It had me in tears until I figured out the problem.

Usually a blood test would be done to measure the levels of methemoglobin in your blood. Arterial blood is drawn from your wrist and sent off for testing. This is a quick procedure. When you're on an island however, and you need an unusual blood test it gets sent either to France or India. My blood went to France and the results came back after I was released.
I wonder though... Does that count as visiting a country? :)

The specialist had had another patient from SA just 2 months before who had also taken Dapsone and turned blue but apparently she had it worse than I did, so thankfully he knew what to expect and how to handle it.

He kept me under observation for the first day, waiting to see if it would correct on it's own or need intervention. I was taken for a heart sonar ( all good there) and they did a round of blood tests to see how things were.
With my oxygen hovering around 91% on oxygen and 87% off, finally at about 3 pm the Wednesday he decided to do the Methylene Blue treatment. Methylene blue is a gorgeous blue dye used in medicine. It works by converting the ferric iron in hemoglobin to ferrous iron.

"Methylene blue is employed as a medication for the treatment of methemoglobinemia. This can arise from ingestion of certain pharmaceuticals, toxins, or broad beans. Normally, through the NADH or NADPH dependent methemoglobin reductase enzymes, methemoglobin is reduced back to hemoglobin. When large amounts of methemoglobin occur secondary to toxins, methemoglobin reductases are overwhelmed. Methylene blue, when injected intravenously as an antidote, is itself first reduced to leucomethylene blue, which then reduces the heme group from methemoglobin to hemoglobin. Methylene blue can reduce the half life of methemoglobin from hours to minutes. At high doses, however, methylene blue actually induces methemoglobinemia, reversing this pathway."
Source

We started the blue drip at 3 along with a cortisone shot. 45 mins later my oxygen was at 100% and my fingers were no longer blue. I had to stay another night in ICU though because Methylene blue has it's own side effects and I would need more monitoring.
Even though it had worked and my oxygen now stayed around 95%, I was detoxing from the dye and I started feeling very agitated and all that eventually lead up to a panic attack at 2 am. The on-call doctor was lovely and stayed with me to after giving me a sedative as well as morphine for the painful chest spasms. ( I discovered that I am one of those people for whom Morphine does not work. It just hurts. Like boiling oil being poured over your neck. Never again.)
She asked me if I had any kids. I said no, just the cats, She had 13 cats and had studied in Cape Town. The sedative finally kicked in and I was able to relax.

Thursday I was moved to a normal ward and started some supplements to build up my blood again. Thursday night I had another sleeping will and a paracetamol drip still for chest pain from the methylene blue. I find it fascinating that a paracetamol drip is 1000mg, exactly the same amount as taking 2 paracetamol pills, but the effect is worlds apart when you're getting it intravenously instead of orally.

On Saturday I was released. Lynton had been to visit Flash in the morning and had been told he was being sent home and to come fetch him on Monday. Yay!

It took a very long time to get stronger again. I slept most of that first week back home. Lots of supplements. Strange vials of Magnesium. Those took a bit to get used to. The concept of breaking glass to drink a syrup is a bit strange to me.

A week after being released from hospital.

A month later I'm still recovering but getting stronger every day. We went out for a short snorkel yesterday.

I wrote this as my status on Fb recently

Pondering the concept of “I have time, I can do it later”. The thing is, nothing is permanent and we are stewards of the objects and homes that come into our care.
If you have a dream you’re putting off for ‘someday when I’m grown up’, figure out a way to do it now. You have now. The milestones and markers and significant moments in your life that you’re waiting for are not someone else’s responsibility to provide to you. You need to make it special. Make it matter. Celebrate the small things and the big things. Make the life that you want to have.

A month ago I was in ICU with a seriously scary reaction to medication that stopped my body from releasing oxygen into my blood.
If 3 days in ICU isn’t a wake-up call then I don’t know what is and I certainly don’t want to have another more serious wake-up call because I was too focused on my phone to wake up to this one.

Live your life now. Yesterday is gone and tomorrow isn’t guaranteed. Be thankful. Be gracious. Be kind.

Thanks for reading
Lizelle
All photo's mine.