Utah Medical Trip Update – 9.2.11

Before I forget, a recap of things the doctors and I discussed this trip and the change in treatment plan.  Met with Dr. Leiferman (dermatologist) on Wednesday (8/31/11) and Dr. Gleich (allergist) on Friday (9/2/11).

Since the last visit in May, when we decided to change the treatment plan a bit, I’ve experienced the most setbacks since I’ve been treated by Dr. Gleich & Leiferman here at the University of Utah.  For one, I was so bad when I first started coming to Utah that there was a lot of room for improvement if we found a treatment regiment that worked, and we did find one (thank heavens!).  By May of this year, my skin condition was a billion times better than before and I had settled on a diet that was stable.  So we felt it was a good time to add new things to the treatment plan, with limited risk of rocking the boat.

Well, as I’ve posted before on this blog, I had adverse reactions to Singulair (an allergy receptor blocker).  First was the drowsiness and lack of motor control, which slowly went away after 3 weeks.  Also, there were the initial daily hives about 1cm or less, about 15 or so daily for about 3 weeks as well.  Then I noticed the patches of rash on my skin were peeling, making the skin thinner and not as solid as the skin I’ve built up as i’ve continued to improve.  Finally, I got burned from the UV narrowband lighttreatment for the first 2 weeks of August (1 treatment per week), skipped a week to let my skin grow back, and got burned again even at a lower dose.  The combined skin damages from Singulair and the UV light treatment caused thick and worrisome rashes, mainly on my torso and face.  It was worrisome because my improvement over the past 2 years had been so great that I haven’t had rashes like this in a long time, although it is still marvelously better than before.

Treatment Plan Change

Immunosuppressants

As I’ve mentioned in all the video health updates, the medication that’s worked wonders is the immunosuppressant Cyclosporin, often used by transplant patients to reduce their rejection of the transplant.  In a similar way, my body rejects food, smells, and just about everything else in the world through allergic reactions.  However, I’ve been on this medication for almost 3 years and it is a very dangerous drug.  “Toxic” as the doctors described it.  While my liver functions, kidney functions, and blood pressure have been constantly monitored and haven’t shown signs of danger, we felt I needed to explore other options to keep my allergic skin flareups at bay other than using this class of medication.

First, I’m going to try a pair of antihistamine medication which Dr. Gleich calls his “Costco solution” which he’s had some miracle results with.  As the name implies, they’re both from Costco, starting with Aller-Tec Cetirizine HCL (H1 histamine blocker) then adding Famotidine tablets (H2 histamine blocker).  These are super cheap at about 4 cents per 10 mg tablet.  I’ll try 1 tablet to start, and increasing to 40 mg in the morning and 40 mg at night for both.  A similar combination also from Costco would be taking AllerClear (H1 histamine blocker) then adding Famotidine (aka Kirkland Signature Acid Controller Maximum Strength).

At the same time, I’ll be tapering off my use of Cyclosporin each week, reducing the doses in steps of 25 mg. I’m currently taking 100 mg and 125 mg on alternate days.  I’ll start taking 100 mg all next week, then 75 mg the week after, 50 mg the week after that, then 25 mg and 0.  The worry is the current 100 mg/ 125 mg alternations have been the lowest I can go before flaring up. It is interesting to see on days that I take 125 mg I can eat some chicken without getting rashes, but the rashes would appear if I did the same on the 100 mg days.  The hope is the Costco Solution combination would take a lot of the edge off of that and be much safer.  However, we do plan on replacing Cyclosporin with another immunosuppressant called CellCept (MycoPhenolate) once I’m completely off Cyclosporin.  Didn’t seem like a good idea to use both Cyclosporin and CellCept given the potential risks of both.

Skin Care

Thankfully, the skin has grown back after the recent UV light treatment burns, the burn areas are still red and dry.  For areas such as this, Dr. Leiferman prescribed an expensive cream called Salex (Salicylic Acid Topical) that should help the skin’s shedding and leave the healthy skin.

UV Light Treatment

For the past year, the light treatment has done a lot to strengthen the layers and quality of my skin.  Burning is always something you look for when getting UV treatment so it wasn’t unexpected.  But with the recent damage done on my skin, Dr. Leiferman prescribes we go back to the 2x treatments a week and at a lower dose.  As I mentioned above, I had gone to a 1x a week treatment but apparently the skin is more likely to get burned when treatments are spread too far apart.  We didn’t know how far “apart” is considered apart for me, but now we know.

Food Testing

The plan in May was to also test rice by eating a tiny bit each day and increase the amount slowly until I could see it causing rashes.  But with the hives and peeling from Singulair and then the UV light burning, the rice testing was put off because it would’ve been impossible to tell if I got a flareup from rice itself.  This type of food testing is where I slowly increase the amount of a specific food I eat to desensitize my body to it and hopefully tolerate more and more.  However, with the medication changes, we won’t try this again for the time being.

Thoughts

This was an inevitable bridge I had to cross as we try to find a stable treatment with the immunosuppressants, antihistamines, or other medication for the long term.  Part of the hope for buying time with these drugs is to do the food testing so I can have a balanced diet, getting enough nutrition without flaring up and my skin degenerating into puss like it did before.  I am not looking forward to the side effects from the new medication and the likely skin flareups and discomforts that would come as I stop taking Cyclosporin.  Then again, I’ve had much worse.  Lets hope the lucky streak I’ve had with the doctors here continues and the new treatments work better than before :)


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