My Xolair Experience

I can't believe I haven't updated on my xolair experience.  I finished my course of six shots in Nov.  On average most people start to see the results of xolair after the third shot.  I didn't notice any difference in my hives until after the 5th shot.  Anyway, here is my experience.

The Process 

I got 2 shots, one in each arm (some patients only require 1 shot in one arm) and had to sit in the allergist office for an hour after the injection so the nurses can monitor me.  I bring and have to have my EpiPen handy in case I have an adverse reaction to the xolair. Halfway through my hour wait the physician’s assistant comes in to check on me and discuss my symptoms, vitals, etc, kinda like a regular follow up appointment.  At the end of the hour the nurse comes back to ensure I’m still not experiencing any adverse reaction before releasing me.  They encourage you to bring something to do while waiting so I brought knitting to work on and that made the wait pass quickly.  

The shots go in the back of the arm muscle and the medication is so viscous that it takes a bit to get it plunge out of the syringe (only a few seconds).  My first two shots where uncomfortable and I had dark purple bruising that lasted two weeks after the injection (I must note that I bruise very easily).  The third shot I had a nurse who was smart and left the medicine out at room temp to warm up and I barely felt those injections and have zero bruising.  So if you are getting these injections have them set the medicine out at room temp for at least 15 min.  

My shots were 4 weeks apart and for my fourth, fifth and sixth injections I only need to stay in the allergist’s office for 30 mins. 

My Results

The first shot I didn’t notice a difference in my symptoms.  After the second injection I started to have severe stomach distention after eating.  It’s hard to say this is related to the xolair as I suffer from this distention due to GI issue flair ups off and on (and have for years)  But the further away from the second injection the better my hives became.  I still got daily hives but the patches of hives were smaller and not as wide spread.  The day of my third injection was the first day I woke up without hives in months.  But the day after my injection the hives came back in the evening but limited to a much smaller area. 

I also noticed after the second shot I started to retain more water and my body seemed “puffy”.  Especially my fingers, arms, legs.  Symptoms stayed the same until the fifth shot.  I started to finally have more hive-free days.  

Now I can get a xolair shot as needed.  Some people wait 3, 6, or 9 months. Others go once back once a year.  I haven't had any xolair since my sixth injection in Nov and I don't know if I will go back for one as I suspect my body didn't tolerate the xolair well.  The further away from my xolair shots the more my symptoms improved.  I really never noticed immediate results after the injections.  

Today, I still get hives but I am learning how to mitigate them better and I'm starting to get longer spans of hive-free days.  And my hive patches are much smaller and easier to manage.   

Natural Remedies

I also discovered some other things that help minimize the hives outbreaks. It’s nice to have things that can help relieve the hives when they pop up.

Shower filter.  I don’t think I mentioned this before but years ago we bought a charcoal water filter that fits onto the shower head and you replace every year. (Rotate it every six months).  

Charcoal soap that I picked up on a whim at my local heath food store.  I let the lather sit on my hives and it really helps to calm them, especially on my shoulders, arms, chest and neck.  

Also, I started using white rice flour on my facial hives and it helps with the itchiness, stinging, and redness.  I just add a few drops of water to make a past and gently massage it on my face and neck and let it sit for a few minutes before rinsing.  Sometimes I blend oats into a fine powder and mix the oat flour with the rice flour which is great for calming the hives.  I try to use the rice flour every day because it really helps calm my skin. I use Bob’s Red Mill rice flour (the same that you cook with) and I like how finely ground it is.  I was surprised at how effective these two things have been to help calm an active hives outbreak.  

Unfiltered raw honey.  In the morning I apply it to my damp face and allow it to sit while I brush my teeth.  Then rinse it off.  Any brand will do as long as the honey is raw and unfiltered.  Trader Joes has a good one as well as Local Hive.   

There are also supplements I have been experimenting with that help control histamine in the body.  Vitamin C, Nettle, Turmeric (with black pepper for better absorption) are ones I have handled well.  I was taking quercetin with bromelain  but didn't seem to tolerate it well so I'm pausing that but may try again in the future. (I think it's the bromelain that didn't agree with me).  I also am interested in trying black seed oil as it is supposed to help reduce inflammation.

I'm currently exploring anti/low histamine diets.  I just started this past week and I will update if I find anything useful.