Going off Keppra

First I should give some background. I'll get to the Keppra in a moment.

I've had a rash on my back for about 5 years. It has sometimes responded to various creams, but it never went away completely. My doctors always dismissed it as a mild case of eczema. Two weeks ago I went to get a biopsy done, and the result came back as a precursor to lymphoma (cancer). Basically the T-cells around the rash are muted and misbehaving. Fortunately the effect is confined to my skin, as opposed to being in all of my body's T-cells generally. It's also not yet a real malignancy (but that's where it's going if not treated). It's also extremely slow moving, which is supposedly typical of this rare sort of skin-only lymphoma.

I'm getting it treated, and the dermatologist says there's little to no risk that it will ever spread. He stressed that the odds of it shortening my life span are extremely low.

Naturally, I researched my condition quite a bit. I found some articles which suggest that Keppra (levetiracetam) might cause this specific type of cutaneous (skin-based) lymphoma:

http://www.ncbi.nlm.nih.gov/pubmed/8617453

http://www.ncbi.nlm.nih.gov/pubmed/25667905

The first article points a finger at calcium-channel blockers in general, but Keppra is a calcium-channel blocker. The second article specifically mentions Keppra (levetiracetam).

These two articles hardly make a bulletproof case, but when I showed them to my dermatologist he suggested that I should indeed stop the Keppra. It also just so happens that the rash appeared at around the same time as when I started on the Keppra. Unfortunately it's been long enough now that I can't confidently remember which came first.

Now, my trouble is that I've been having a hard time getting hold of my neurologist. The soonest appointment I could get is still weeks away. I find this extremely frustrating. Cancer feels like an emergency, and the advice I need him to give me would take no more than 10 minutes of his time.

My epilepsy case is extremely simple:

About 6-7 years ago I started having simple partial seizures on a monthly basis. They were purely psychological in nature. 5 years ago I had my first generalized grand mal seizure. I woke up in the ER. They gave me a head scan of some sort, which came back clean. The doctor there put me on Keppra, at 1000mg/day. An EEG a few weeks later came back clean. The Keppra worked really well, and the simple partial seizures stopped completely.

A few months later I was stupid and missed a pill or two (or perhaps three). I had my second grand mal, almost certainly due to a withdrawal effect. That was 5 years ago, and it was the last time I ever had seizure activity of any sort. I've never had another simple partial, nor another grand mal.

I once spoke to my neurologist about going off of the Keppra altogether. He said that I could, as per this sort of argument:

http://www.webmd.com/epilepsy/guide/stopping-your-epilepsy-treatment

However, he said that my chances of going seizure free without meds increased the longer I stayed on, so I chose to stay on the Keppra.

Approximately three years ago I found myself stuck in a foreign country for longer than expected, and my Keppra supply got pretty low. To save pills I started taking 500mg per day, as opposed to 1000mg. My neurologist had already recommended me for a wean, and nothing had changed. He had once described the wean procedure, so I figured it was OK to just go for it. I really was stranded, so it was a choice between cutting down or running out and then going off cold turkey. Cutting down was indeed OK, and for the past three years I've been on 500mg/day, still with zero seizure activity.

My checkups have only ever consisted of me reporting no activity, followed by the neurologist giving me a renewed prescription.

Given the lymphoma, I feel a strong to need to start a full wean as soon as possible. I know it usually takes a few weeks to do that safely. Does anyone have any advice about how to go about it?

I plan to call the nurse at my neurologist's office and tell her to alert him that I'm starting a wean. Most likely he'll just glance at my chart and not object. Then when I visit him in a few weeks I'll already be in the process. I just need some advice about how to start it the wean, because apparently he doesn't have the time of day to talk to me for all of 5 minutes.

I plan to find a new neurologist (but a new "new patient" appointment is even more of a wait, so for now I'm stuck with what I have).

I've heard that people tend to wean down from 3500mg/day by slowly cutting off 250mg increments, and then skipping every other day once down to 500mg/day. But I'm already at 500mg/day, so skipping feels risky. Could I maybe take 250mg/day? Is that even an amount that your body would register? I know 500mg/day is already as low as it normally gets.

If your advice is "don't be so impatient," then feel free to say so.