Trying out Singulair

Waiting for Carlie, Still Slightly Flushed
In the ER at St Joe's 

I have been having a hard time writing this blog entry in part, because I was still deciding how I could best utilize this blog for awareness raising. Not everyone wants to hear the nitty gritty day to day of living with chronic illness. And how Mast Cell Activation Disorder (MCAD) affects me is not the same as how it affects everyone else. But I have decided to go ahead and blog here on the main page, and the various other pages of this blog will be for general information, interviews with other people dealing with mast cell disorders, and the like. Please
check  out some other great and very informative blogs on Mastocytosis, MCAD and Idopathic Anaphylaxis in the links section to the right.

If you would like to see something on this blog which is not yet here, has not been discussed, etc. please feel free to ask. As I get the time and energy I will be adding blog entries, links, information, etc.  Done with the housekeeping/site upkeep, on to the meat of the entry: How starting Singulair went for me:

I.V. in right arm for IV Benedryl and Solumedrol
No IV Fluids needed this time

Released from St Joe's 4 hours later
Feeling exhausted but no longer reacting

Obviously from the photos, you can see that starting Singulair did not go well for me, although an ER visit and a couple weeks later I am fine.  But let me go back to the beginning.

When Dr Lewis told me that I have Mast Cell Activation Disorder, he also said he would like to start me on Singulair. He told me, and I've verified that this is true, most people tolerate Singulair very well. Of course people with Mastocytosis and Mast Cell Activation Disorder are not like *most* people, and it varies. But many mast cell patients are on Singulair and it helps them, so I was hopeful and excited.  In fact he tol dme, I probably would feel no results for 2 to 3 weeks. He said I should just take one before bedtime, and in about 2 or 3 weeks we would find out if it was helpful for me and could consider adjusting dosage as needed. It might take a couple months for me to start regaining many foods, but that I should see a slight reduction in symptoms and frequency in 2 to 3 weeks, and then we could move forward from there. Sounds great right?

Before taking a new medication I usually check what fillers are in it, but not what the side effects are. This way I can avoid fillers which trigger me, and if I react to it, I know it was my actual reaction, not my brain making up stories which doctors love to assume. Because I have no preconception of what the medication may make me feel, if I do start reacting, I tell my doctor and look to see if it is a known side effect at that point.

I made two miscalculations based on what I was told by my doctor. One, I did not account for the fact that my MCAD has me reacting to practically anything these days, and even before diagnosis we knew I tend to be  allergic to many medications, or react strongly to them.  Two, I did not check the fillers in the Singulair. Which is odd, I usually do check what fillers are in things, because I can react to medicine that is made with fillers from soy, dairy, wheat, or if they strangely had nuts including coconut, etc. It turns out name brand Singulair is made with a lactose base. I do not know if I would have reacted to that, but I did react to the generic. Side note: It could very well have been from some fillers although my doctor believes I reacted to the main ingredient of the Singulair itself. I believe that particular company uses corn which as a rule I do not think I react to, but in certain forms I can, such as if pesticides were used or if it's GMO corn, which fillers probably are) So corn is also currently on my list of things to avoid, tho I do hope to gain it back later and occasionally enjoy some gorgeous locally grown, heritage corn when I run into it at the Farmer's market or Maya's Farm Co-Op.

We picked up the Singulair prescription that same day, and before I went to bed I popped one into my mouth with my other regular bed time medication, Simvistatin.  I was totally relaxed and nonchalant about the whole thing, and did not even follow our usual  protocol for trying new medications or foods which up to that point, was to have Carlie on standby with Epi, just in case.  I do not know why I did things so much differently than usual, except that I had heard such great things about it, and was excited to finally get to try a new medication and hopefully reduce my amount of Epi and ER visits.

Sadly, things didn't go as planned. Soon I began feeling very odd. I became extremely weak, cold, my throat felt thick and I couldn't stop coughing but i could still breath although I had a slight wheeze, and my hands and head felt very weird almost disconnected. I could feel them if I touched them so it wasn't actual numbness, but it definitely felt like I was disembodied a bit. The world turned an  off color as if suddenly I was looking through an old browning camera which happens to me when my blood pressure drops, and my skin felt like acid was running beneath it, a classic sign I have now started to recognize as meaning my mast cells are degranulating, sending chemicals like prostaglandins and such running around my body looking for jobs that they do not need to be doing.  It lead to some other embarrassing and disgusting side effects related to gastric distress as well.

I was on facebook with a friend at the time telling her what was going on because I did not want to wake Carlie and was not sure what to do, and because I was so confused from the medication I posted some very odd things. I wish I could say that I had used an Epi at that point, and woken Carlie, but I did not. Carlie woke long enough to tell me to "take that pill you take" Meaning she heard me breathing funny and thought I  should take some Benedryl. Or at least that is what I took her to mean, so I did so. Benedryl reduced my symptoms somewhat, and eventually I was able to go to sleep.This whole experience scared me and that I was feeling quite anxious when I woke 3 hours later with a return of the same symptoms.

The next day I called my Dr and filled him in. His nurse told me that he was out for the day but she would give him a message and to not take any more Singulair. It's not like I was going to. She also said that I could take more Benadryl since it had been 3 hours and my symptoms were returning but if that did not work, to Epi and go to the ER.  I called them back later because taking Benedryl every 3 hours was no longer working. I was starting to cough and feel a swelling in my throat. My hope when I called them was that I would be told that yes I should take a hydroxyzine an see if that made it better. Instead they told me to Epi and ER, so I got out my Auvi-q talking Epi Pen and did. Carlie was at work at the time, but about to be done for the day, so after calling 911, I called her and she said she would meet us at the hospital. I'll write about trips to the ER in a separate post, this one is already too long. Obviously we will not be trying the name brand Singulair ever again. It may be possible at some point in the future to try a compounded version to see if I was reacting to the fillers, but for now Dr Lewis does not want me taking Singulair. Next we are going to try Gastrocom. More on that in a future blog.

Please feel free to share your own experiences, thoughts, questions, etc. in the comments section. I will be posting a bog about why I wear a mask, trying Gastrocom, Interviews with other MCAD an Mastocytosis patients, and others soon. If you have a suggestion for a blog entry you would like to see, please let me know.