So, what happened with our PHN group?
Posted , 12 users are following.
I haven't been here for a while, but I'm really surprised to see that the most recent activity was weeks ago, and before that , months. I'd love to think it's because everyone is just peachy-keen, hunky-dory and fit as a bunch of fiddles. I'm slowly making progress with my PHN from shingles back in October 2016. I had no rash, so no anti-virals. Mine is in my back/check/bra line. I'm VERY slowly tapering off gab. In December 2016 I was at 2700 mg, now finally down to 600 mg. I hate the dang drug and will be glad when I'm off it. I don't think it's giving me any relief now, and with each successive taper, the withdrawal is the pits. But I end up better and the end. How's everyone else doing?
0 likes, 44 replies
Kalgranny babs99203
Posted
HI there. I received a message from ashok1082 asking what has happened to this site and little participation. I found it becoming harder to use and low participation. I am now using FB and am a member of 2 sites for people with PHN. 4 YEARS now with PHN for me.
Coping as best I can. Take 300 mg of Lyrica daily and an older drug buprenorphine prescribed
by my pain doc.
babs99203 Kalgranny
Posted
Kal, which FB groups or other sites do you use? I'd love to be in another one. As I wrote, I've been lucky that my PHN is improving, probably decreased about 95% from the early days. We all remember those first few weeks, I'm not talking about that. Unless I'm dealing with withdrawal from my gab decreases, my pain is usually down to uncomfortable and frustrating, not extreme. So that would be 1-2.5 vs 5-8 in the first 18 months.
Many of the drugs they give such as gab, Lyrica or the "trylines" (amy etc.) don't really help and I believe it also made my pain worse because of the WD. Lyrica was never approved for PHN, gab was approved buy only decreased pain in less than 40% of the people.
ashok1082 babs99203
Posted
Gab seems to have more side effects
Geezee babs99203
Posted
I've been trying to post for awhile, but every time I do it says the post has been sent for moderation. It then never gets posted.
What I have been trying to let people know about is that there may be a significant genetic component to PHN and the delay in recovery. Has anyone in the group had a genetic test done?
babs99203 Geezee
Posted
No, I haven't. My father had shingles, my husband's had it 5 times (always got the anti-virals in time, lucky dog) and mine was only once, but with PHN. My daughter and we agree that she needs to be vigilant about it. Unfortunately, mine had no rash, only a few hours of intense, cramping pain in my shoulder blade, days of being fine, then 10 days later the lasting, intense pain so no anti-virals.
Yes, this website is funky. I've gotten to the point that when I'm ready to post, I copy the post before I hit send. Then if I get that Mod thing, I can paste it in somewhere else and figure out if I need to eliminate certain trigger words, websites (which I never put in, but even partial listings seem to set off Mr. Moddy), then re-post. I've lost way to many multi-paragraph, perfectly innocent posts the last two years.