Still feeling motion-sickness like syndromes since starting Xolair.  But maybe it’s because of the dramatic IgE changes my body is adjusting to?  Just a thought.  However, I do not FEEL that my allergy levels have dropped by more than 50%.  Still reacting to foods that I try, just as I usually do.

Attached are the blood tests on 1/13/12 for some IgE and other tests.

Would I be overdosing? Actually with my 22,000+ IgE level, this dosage of Xolair is a drop in the ocean. Think of it like adding spices to soup. You have to add enough to change the flavor. In people like me with severe allergies, the flavor changes is changes in my allergic reactions. However, with 22,000+ IgE, using this dose of Xolair is like dropping a spec of salt in a tub of soup – wont taste a thing.

So why try? Well, it will make a tiny difference, even if unnoticeable, it should lessen the load on my body fighting off constant allergic reactions. Hopefully that’ll give my body more of a chance to fight back. Ive had enough miracles happen to me to know the improbable does happen. It’s why I’m still here. It’s the story of my life. Even if its a slim chance, If you don’t try, there’s no chance.

That said, it’ll take probably 3 months to notice improvements, if any. But the 2 times I’ve taken Xolair I’ve felt bad effects. The only bad effect it should have is allergic reactions. I have many kinds of allergic reactions. One is a motion sickness like feeling with weakness and hot sweats. I get this kind of reaction more from smells, like perfume, but other things trigger it too. That’s what I’m feeling now so it’s been a sluggish and unproductive few days. Hard to be out of bed doing much.

Will see if these symptoms last and if I can hang in with Xolair for 3 months. Will be great if I can and this helps. It’s a surprisingly safe medication with barely any side effects, which would make for a very short Medication TV ad.

Was a bit anxious at first knowing the potential for anaphylactic shock. Even though that’s only about 1/1000 people, I’m usually that 1. Stayed in the nurses station for 2hrs for observation for any adverse effects. Immediately after the shots were administered I felt my temperature rise, skin rashes seemed more inflamed, and chest tightening which made breathing harder. Did a few flow meter tests for asthma and they continuously monitored my blood oxygen level, but after the 2 hrs I felt ok and have returned home to rest. However, adverse effects including rashes, hives, asthma, and shock may still occur within 7 days, so I’m praying that nothing happens!

Thanks for all the help and always getting back right away.  Look forward to seeing you in 2 weeks.

Dr. Sarpa had conducted blood tests for the following panels and all my readings were ok to go ahead to try CellCept:

• Alkaline Phosphatase
• Alt
• Bilirubin
• Sodium
• Potassium
• Chloride
• CO2
• Creatinine
• Glomerular Filtration Rate

For those curious, what is CellCept? The National Institute of Health (NIH) describes it as:

“Mycophenolate (CellCept) is used with other medications to help prevent transplant organ rejection (attack of the transplanted organ by the immune system of the person receiving the organ) in people who have received kidney, heart, and liver transplants. Mycophenolate (Myfortic) is used with other medications to help prevent the body from rejecting kidney transplants. Mycophenolate is in a class of medications called immunosuppressive agents. It works by weakening the body’s immune system so it will not attack and reject the transplanted organ.”

But if any good can come of my surviving life rather than simply living it, it’s that my experiences may help others journeying down the same path.  So, as you’ve seen here, I’ve been trying to document more on this blog the experiences I’m having now.  This war is far from over, so giving others a roadmap starting here is better than no map!  Also, I may go through conditions I’ve gone through in the past and be reminded of things I can share, like today:

Breathing has needed much effort the last week or so.  Sunday night was my last dose of 25mg Cyclosporin, but 25mg didn’t feel like it did much compared to the 125mg/100mg I was on just 4 weeks ago.  Others can clearly see the thick rashes on my face, and I can feel it itch and cracks of broken skin underneath my clothes.

Yet what most observers don’t comprehend about conditions like mine is the internal reactions are just as bad, or sometimes worse, than what you see on my skin.  It’s just those are the most obvious.  Without enough Cyclosporin holding things back, my gastrointestinal tract as well as my air passageways (which are connected) are reacting to things I eat and anything I smell.  Even with my diet limited to beef, potatoes, and Elecare, the insides of my stomach feels swollen and food just sits in there.  I hardly feel like eating more than 1 meal a day.  When I do try to eat a 2nd meal, I just don’t feel like I have anywhere to put the food.

So as I feel my stomach fighting off the beef and potatoes, as well as whatever’s in the air, there’s a lot of mucus-y phlegm clogging up my throat and sinuses.  Just keeps filling the already-swollen passageways in my throat, nose, and mouth like Yellowstone.  I find myself back in the exercise rhythm of pushing to get breath out to exhale, trying like taking deep breaths just to get a some bit of air.  I’ve done this for most of my life, so it’s comes naturally to me.  Yet with the last few years of freedom, now I do notice how different this is from “normal” breathing that affords me extra attention to look around, be involved with other’s conversations, etc.  I guess the best way I can explain my current labored breathing is like how hard you have to work at a checkup when the doctor tells you to take big big breaths in and do complete exhales.  Then, keep that up 24/7, which gets you into a rhythmic “zone” as some runners, cyclists, or rowers may get into.

So, I do feel like I’m missing a lot more of what goes on in the environment around me as I have these blinders on to focus on my breathing, controlling my throat and ab muscles for swallowing the gunky mucus, and getting from once point to another.  It also makes it VERY hard to talk.  The story I always tell is when I was barely 4 yrs old, or probably younger, I would have severe asthma attacks just from talking a little loud, laughing, or running.  So, people who meet me in person now see me as quiet, calm, and not very talkative (yet online I have a lot to say!)  The Jeffrey you meet in person is just the result of a lifetime of conditioning of NEEDING to be quiet, calm, and of few words.  Any other more energetic behavior, if I could even muster it, resulted in unwanted suffering, so it was best not to.

How I feel right now is 99.9% better than how I felt just 5 yrs ago.  There were a lot more other conditions and symptoms, among other things, that required my attention just to get from moment to moment, like itching in more places than I had hands to scratch, but that’s another skill in itself!

Just simply sharing my experiences here.  Not looking for sympathy.  But I do hope it helps you to see what you observe or may know about someone is probably just a tiny part of why and how they are.  Also, how they are may not be who they are inside (or how they see and know themselves).

Last night I decreased the amount of Cyclosporin yet again to 25mg from 50mg all last week.  But even towards the end of last week, you can see the rashes peeking through more and more until they’ve gotten a foothold and started spreading.   This is all while I’m back on a almost-food-abstinent diet, getting by on just drinking elecare and some beef and potatoes here and there.  I’m am dying for some real food!  But that’s the irony here isn’t it – if I do eat anything else (which are all stuff I’m even more allergic to) my skin would be much worse or maybe even a relapse.

It seems I’m spending through, or using up, much of the layers of skin I’ve build up the last few years with the help of Cyclosporin and the bathing therapies.  While I’m still doing the bathing therapy, that along with the two Histamine combo just doesn’t seem to be enough.

Just over a week ago, while I was winding down the week of 75mg of Cyclosporin, I was actually feeling pretty confident I could get by without it, that this transition to Cellcept, or even nothing at all, was possible.  My doctors had suggested maybe even going a week or two on just the Histamine combo and see how I do.  We also discussed the idea of using the Xolair shot, which has worked well for others like my business partner Shane to reduce his IgE levels.  However, Xolair’s effectiveness, we always thought, wouldn’t be enough to make even a dent in my 20,000 IgE.  The most Xolair may be able to reduce that by is a couple hundred. Maybe 1%.

Maybe Xolair’s still an option, but given how I’m feeling today, I believe I definitely need to get on a healthy dose of CellCept, or some other immunosuppressant if Cellcept doesn’t work.

Been keeping my spirits up by taking on several projects and working a lot.  But this evening as I’m trying to wind down, and wanting to have dinner, I’m having to come back to reality again and just a bit bummed.

The reduction of Cyclosporin from alternating days of 100mg and 125mg to 100mg/day has gone much better than expected.  Though there are two minor patches of rashes on my torso (left ribcage area), the rash areas have been well controlled with the continuation of the bathing regiment (robathol oil + salt in the tub, seal with vanicream and triamcinolone in affected areas on skin).  However, I haven’t been on just 75 mg of cyclosporin…ever.  So I’ve been keeping a very strict diet of elecare and beef (either as plain Carls Jr Famous Star hamburgers or home made steak) with some potatoes.  For fruit, I’m eating blueberries, which is the only fruit that I’m technically not allergic to.

Cetirizine (aka Zyrtec or AllerTec) has felt much better than Singulair.  I am feeling the drowsiness effects of Cetirizine, but unlike with Singular my motor control is fine and I have energy when I am awake.  It is interesting to experience the difference between sleepiness vs. tiredness/low energy(ness).  This means, unlike when I tried Singulair, I can be productive and active when I am awake.  Also, not experiencing any hives or other side effects from Cetirizine or Famotidine that I can tell.