Finding The Right Mix For Neuropathy And HIV

Today's post from positivelite.com (see link below) is one man's account of his search for the most appropriate drugs for both his HIV and neuropathy and calcium deficiency. It's no easy task finding anything that works and it's unfortunately different for every individual but spotting something that has worked for someone else may well be the basis for starting a new discussion with your doctor. Furthermore, just knowing what other people are going through builds up your own understanding of the disease.

Adding Some New Meds to the Mix
21 May 2012

Wayne Bristow updates us on treatments he’s now started taking for peripheral neuropathy and for calcium deficiency.

I’m having success with two new meds, One has helped me improve two areas - walking and sleeping, but is it just a temporary fix? The other medications? Well, read on………

At my last doctor’s visit I was telling him again that I was having troubles when going on my hikes. After walking long distances or standing in one spot for long periods of time, it felt like I was standing in bare feet on a bed of stones. I would always have to shift from one foot to the other to take the pressure off and get a little relief. He said it could be peripheral neuropathy which is a common condition for people living with HIV. (PositiveLite.com editor Bob Leahy wrote about his experience with neuropathy here and now Dave R.,an expert in this field, has written about the topic for The Body.com and PositiveLite.com here.) So my doctor prescribed a new medication.

The medication he prescribed is Elavil, a drug used many years ago to treat depression. He said the dosage I was getting would be a small fraction of the amount they used for depression. I have no idea what that dosage was; what I'm taking is a 10 mg pill. When I started it, I was to take one tablet at bedtime for two weeks and then take two tablets at bedtime after that. There are some side effects that I have experienced like dry mouth and constipation but that can be better than the other option - well most of the time. There is one good side effect though - I'm getting some very much needed sleep, I can roll over and nod back off for another hour or two. As for the neuropathy, I can now stand without so much discomfort. Walking, well, like I said, I have other issues with my ankles, but I can walk longer distances now and it no longer feels like I’m walking on stones.

So the medication is working except for the aches and pain in the joints of my ankles, thanks to normal aging. I also have different issues with my left foot, I smashed it on both sides back in the early 80s which resulted in having a plate with five screws on the outside of the ankle and a big long one on the inside. They were removed about a year later, so there are times when it bothers me in other ways.

The extra sleep?, I can’t say enough about how it is helping me. I use to be up all hours of the night, going to bed around 3 a.m. because I just wasn't tired. Sometimes I felt tired but would go to bed and just lie there and not be able to sleep. Now, I can go to bed much earlier, I try to watch TV for a while but nod off quickly. I have to drag my butt out of bed around eleven the next day and I feel much more rested. I am not a groggy person who hates to get up, I’m usually in a good mood except when I wake up in a strange bed. By strange I mean in a hotel whenat a training workshop or conference, or when I’m visiting somewhere.

The only drawback to the Elavil is, and I’ve only heard this from others who have taken this type of medication, it may only work for a while. One day it might not work anymore.

The other new medication I have is for my calcium problem. I was taking Actonel, a once a month pill along with Vitamin D3 and Calcium that were to help build up calcium. I have next to no bone density in my spine, as of my last bone scan. The other bigger bones in my body are good. The doctor felt the Actonel could be a contributing factor for my acid reflux/heartburn problems so he changed it to Teve-Risedronate 35 mg, a pill I take once a week. This too has helped, I'm having less incidents of acid reflux. I have stopped eating or drinking certain things before bedtime as well.

I really didn’t like adding more medications to the mix but the relief I’m having, even if it may be temporary, has made me do a happy dance.

http://positivelite.com/health/tags/peripheral-neuropathy?app_id=1