Re: Lyrica & shingle

February 4, 2007

Ladies, I do not know anything about Lyrica or the vaccine for shingles, but I

have had them 3 times and this last time was pure hell......the first time I had

them was in 1959 and I had them around my bra line; (have no idea what

caused them); then in 1990, I was under a LOT of stress and I got them again

in the same area as before! Then last June, I came down with them again and

this time they were all over my behind, down my legs, and around toward the

front area -- they were one big blister and they left scars this time! And the pain

was almost intolerable. At the time, I was in a sarc flare plus I was coming down

with histoplasmosis (which I did not know). I would not wish the shingles on my

worst enemy..........

Hugs,

Darlene

NS Co-Owner/Moderator

Marla, maybe you have what's called " post-herpetic neuralgia. " Some people who have shingles continue to have pain after the lesions have cleared up. Lyrica is the only drug that is approved for diabetic nerve pain & post-shingles pain. You might want to ask your doctor what he/she thinks. It's not a pain pill like Vicodin, etc. Of course, like all drugs, there are potential side effects. Like I said, the only problem I had was daytime drowsiness when I took it twice a day. It was originally ordered as 150mg twice a day, and I cut back to once a day. Then in Nov. when my kidney specialist gave me a bunch of samples, they were 75mg, so I tried the lower dose. It worked pretty well while I was still on the Cymbalta also, but after I weaned off the Cymbalta (changing antidepressants) I had to go back up to 150mg at night. I don't know what kind of dosing is used for the post-shingles pain, but it might be worth a try if your doc thinks that's what you have.

Did you know that a large percentage of adults who had chicken pox as a child will develop shingles as adults? I'm thinking it's something like 80%; I believe the risk increases as you get older. There is now a vaccine to prevent or lessen the effect of shingles; it's recommended for anyone over 60, I think. Probably once you've had shingles you wouldn't benefit from the vaccine. I'd like to get it now, but I'm only 58, so Medicare probably wouldn't cover it. One episode of shingles I could tough out, but the long-lasting pain is another story.

Dr. Baughman told me to count on getting shingles at some point. I asked him if it's because of the immune suppressants, and he said partly that, but people with sarc almost always develop shingles. Maybe if I got a statement from him, the vaccine would be covered. I have no idea of the cost. Anybody had the vaccine or heard anything about it?

Marla, know that I'll keep you in my thoughts & prayers, and hope that this pain lets up soon.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To:

<Neurosarcoidosis >Subject: RE: LyricaDate: Sun, 4 Feb 2007 11:36:20 -0700

Hi Rose,

Thanks for the information, my biggest problem is my head, I get this pain that feels like I will be breaking out in a zoster at any time, just burning, intense pain, L side of face, check and temple, and then I do have lesions in the hair all over but they only burn on the L side, strangest thing, and my arm, hip and thigh and toes on the L side, I think I've had a little set back, I've done a lot of sleeping this weekend, the pain is just wearing me down, going outside with the temps in the single digit kill me. I can't really take anything for it, as I don't do well with pain meds. Thanks again for the info it's so nice having you back, hope you are feeling better. I hope everyone has a blessed day today.

Marla Bramer

" Faith sees the invisible, believes the incredible and receives the impossible "

From:

Neurosarcoidosis [mailto:Neurosarcoidosis

] On Behalf Of Rose Sent: Saturday, February 03, 2007 9:20 PMTo:

Neurosarcoidosis Subject: Lyrica

I've been on Lyrica for almost 2 years. The only problem I've had is drowsiness when I took it twice a day, so I cut it back to just bedtime. It has made a difference in the neuropathic pain in my feet. Marla, I'm with Barb--I don't know why the ins. co. would make such a deal out of it. Now when I was on Cymbalta, I needed prior auth., but that only took a couple of days.

It's quite cold here in central Indiana too. Of course, I'm loving it, except my feet. If I'm going to be out doing errands, etc., in this cold weather, I use my little handwarmers from Walmart. They are usually in the hunting dept, but they have them at the checkout here. There are 2 packs of 2 for $1.25. Footwarmers are available, but I've found that the handwarmers are cheaper & stay warm longer. I put them in my shoe, under the arch of my foot. When I get home, I put on an extra pair of socks (thick, insulated men's sox) with the warmer between them, over my toes. It's uncomfortable to walk on them; that's why I put them on top. Most of the time at home, to save money, I use homemade rice socks, small ones that I can heat up & tuck inside my extra socks. Keeping my feet elevated still makes a big difference. Just straight out on a stool doesn't help as much as being up a foot or two higher. I try to keep my tootsies warm & elevated and that reduces the amount of medication I need.

that's my story & I'm sticking to it!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To:

Neurosarcoidosis Subject: Re: appreciationDate: Sat, 3 Feb 2007 12:49:21 +0700 (ICT)

Marla,

If the name of the drug is Lyrica, I take and have for about a year now. It has had some nasty side effects but you know how we are we just keep going through those side effects. On the very last page of adverse reactions (that would of course be page quebillion and one), you know the side effect that .000001% of the people got. I got it, I had a bad cellulitis in my leg. That was treated three times. Now I have a bright red non raised rash over the whole lower leg all the time. I have some swelling and have had some weight gain. I still get the muscle tremors just like I did with neurontin. (you know the tremors that give your husband a black eye in the middle of the night.) And whoever knows if it really helps the pain, maybe it does.

Anyway that has been my experience with Lyrica. It is a normal medication so unless your insurance has to approve all your meds I don't know why they would this one. Then again perhaps I have butted in and am reporting on the wrong drug.

God bless you,

Barb J.

appreciation

I want to thank everyone who responded to my letter, as well as those who are holding me in their thoughts & prayers. I made a little poster for my kitchen wall called " Good Things DO Happen! " I've been writing down stuff like docs giving me free samples, being able to sled with my grandkids, etc. I'm also adding the NS family, just to see it several times a day & remind me.

Like I said, I've lived with depression for at least 25 years, but this is the first time I've thought abot suicide so often and so analytically. I know how terrible the effect is on loved ones, whicvh is why I wanted to make sure there was so suspicion of it at all. Really the best thing I could come up with was running my car off a cliff, because I wouldn't kill someone else, was pretty likely to accomplish my goal, and it would be believable aftewr my collision with the telephone awhile back, just " spaced out. " But there aren't any cliffs around here--maybe something else to put on my poster--so I was forced to keep on keeping on. Now my cousin Lulu is here from San Diego . You oldtimers probably remember me talking about her; she comes to visit every summer and is truly an angel for my mom & me. Her husband is in Chicago for some Navy training, she flew out to see him, then rented a car & drove down here (central Indiana ) for a short visit. Something else for the poster. I think I could fill that page up pretty fast if I looked around enough.

I know that I'll still have ups & downs, but I believe I'm back on my path. Someone warned about higher risk of suicide when you are feeling better, and that's often true. People who are deeply depressed often don't have the energy to act, and when they start to feel a little better, they may then do something. I have some people now to be accountable to--my doctor, who I'm seeing again tomorrow; Lulu; and you wonderful people!

The next couple of days will be really hectic, with everyone trying to get over to see Lulu, so if I'm absent don't start worrying about me. She'll be driving back to Chicago Friday afternoon, then I'll hit the ol' keyboard. I'm attempting to attach a photo of my angelic cousin Lulu.

Ramblin' Rose

Moderator

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February 4, 2007

Hi, I hate to butt in again, but I couldn't help myself. I have had those shingles around my bra line off and on for 5 years and tried everything for them. Finally found (online) a site that said when I felt them coming on to coat the inflamed areas with a strong solution of licorice root tea. It worked! Since then I found my source of causes; working on the word processor, especially my left hand/arm/shoulder, triggers the nerve pain that leads down the road to HELL. I also had to quit most of my FUN crafts such as crocheting as it triggers those same nerves to begin their "SHINGLE SIGNAL" I have learned not to overdue any exercise that may trigger the warnings!!!!! I just wish I had known about licorice extract before getting all scarred up. The scar tissue like to become flakey and itchy. Some days I can't wear a bra because the the edges catch on my scars....but I do sleep in bed

now instead of sitting up in bed not sleeping a wink at night. You're right no one in their right mine would wish those SHINGLES on their worst enemy. Sincerely, Clare Darlene Arney wrote: Ladies, I do not know anything about Lyrica or the vaccine for shingles, but I have had

them 3 times and this last time was pure hell......the first time I had them was in 1959 and I had them around my bra line; (have no idea what caused them); then in 1990, I was under a LOT of stress and I got them again in the same area as before! Then last June, I came down with them again and this time they were all over my behind, down my legs, and around toward the front area -- they were one big blister and they left scars this time! And the pain was almost intolerable. At the time, I was in a sarc flare plus I was coming down with histoplasmosis (which I did not know). I would not wish the shingles on my worst enemy.......... Hugs, Darlene NS Co-Owner/Moderator On 2/4/07, Rose <mamadogrose (AT) hotmail (DOT) com> wrote: Marla, maybe you have what's called "post-herpetic neuralgia." Some people who have shingles continue to have pain after the lesions have cleared up. Lyrica is the only drug that is approved for diabetic nerve pain & post-shingles pain. You might want to ask your doctor what he/she thinks. It's not a pain pill like Vicodin, etc. Of course, like all drugs, there are potential side effects. Like I said, the only problem I had was daytime drowsiness when I took it twice a day. It was originally ordered as 150mg twice a day, and I cut back to once a day. Then in Nov. when my kidney specialist gave me a bunch of samples, they were 75mg, so I tried the lower dose. It worked

pretty well while I was still on the Cymbalta also, but after I weaned off the Cymbalta (changing antidepressants) I had to go back up to 150mg at night. I don't know what kind of dosing is used for the post-shingles pain, but it might be worth a try if your doc thinks that's what you have. Did you know that a large percentage of adults who had chicken pox as a child will develop shingles as adults? I'm thinking it's something like 80%; I believe the risk increases as you get older. There is now a vaccine to prevent or lessen the effect of shingles; it's recommended for anyone over 60, I think. Probably once you've had shingles you wouldn't benefit from the vaccine. I'd like to get it now, but I'm only 58, so Medicare probably wouldn't cover it. One episode of shingles I could tough out, but the long-lasting pain is another story. Dr. Baughman told me to count on getting

shingles at some point. I asked him if it's because of the immune suppressants, and he said partly that, but people with sarc almost always develop shingles. Maybe if I got a statement from him, the vaccine would be covered. I have no idea of the cost. Anybody had the vaccine or heard anything about it? Marla, know that I'll keep you in my thoughts & prayers, and hope that this pain lets up soon. Ramblin' Rose Moderator From: "Marla Bramer" <mebramer (AT) gmail (DOT) com>Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: LyricaDate: Sun, 4 Feb 2007 11:36:20 -0700 Hi Rose, Thanks for the information, my biggest problem is my head, I get this pain that feels like I will be breaking out in a zoster at any time, just burning, intense pain, L side of face, check and temple, and then I do have lesions in the hair all over but they

only burn on the L side, strangest thing, and my arm, hip and thigh and toes on the L side, I think I've had a little set back, I've done a lot of sleeping this weekend, the pain is just wearing me down, going outside with the temps in the single digit kill me. I can't really take anything for it, as I don't do well with pain meds. Thanks again for the info it's so nice having you back, hope you are feeling better. I hope everyone has a blessed day today. Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Saturday, February 03, 2007 9:20 PMTo: Neurosarcoidosis Subject: Lyrica I've been on Lyrica for almost 2 years. The only problem I've had is drowsiness when I took it twice a day, so I cut it back to just bedtime. It has made a difference in the neuropathic pain in my feet. Marla, I'm with Barb--I don't know why the ins. co. would make such a deal out of it. Now when I was on Cymbalta, I needed prior auth., but that only took a couple of

days. It's quite cold here in central Indiana too. Of course, I'm loving it, except my feet. If I'm going to be out doing errands, etc., in this cold weather, I use my little handwarmers from Walmart. They are usually in the hunting dept, but they have them at the checkout here. There are 2 packs of 2 for $1.25. Footwarmers are available, but I've found that the handwarmers are cheaper & stay warm longer. I put them in my shoe, under the arch of my foot. When I get home, I put on an extra pair of socks (thick, insulated men's sox) with the warmer between them, over my toes. It's uncomfortable to walk on them; that's why I put them on top. Most of the time at home, to save money, I use homemade rice socks, small ones that I can heat up & tuck inside my extra socks. Keeping my feet elevated still makes a

big difference. Just straight out on a stool doesn't help as much as being up a foot or two higher. I try to keep my tootsies warm & elevated and that reduces the amount of medication I need. that's my story & I'm sticking to it! Ramblin' Rose Moderator From: Barb <wauwau75 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: appreciationDate: Sat, 3 Feb 2007 12:49:21 +0700 (ICT) Marla,

If the name of the drug is Lyrica, I take and have for about a year now. It has had some nasty side effects but you know how we are we just keep going through those side effects. On the very last page of adverse reactions (that would of course be page quebillion and one), you know the side effect that .000001% of the people got. I got it, I had a bad cellulitis in my leg. That was treated three times. Now I have a bright red non raised rash over the whole lower leg all the time. I have some swelling and have had some weight gain. I still get the muscle tremors just like I did with neurontin. (you know the tremors that give your husband a black eye in the middle of the night.) And whoever knows if it really helps the pain, maybe it does. Anyway that has been my experience with Lyrica. It is a normal medication so unless your insurance has to approve all your meds I don't know why they would this one. Then again perhaps I have butted in and am reporting on the wrong drug. God bless you, Barb J. appreciation I want to thank everyone who responded to my letter, as well as those who are holding me in their thoughts & prayers. I made a little poster for my kitchen wall called "Good Things DO Happen!" I've

been writing down stuff like docs giving me free samples, being able to sled with my grandkids, etc. I'm also adding the NS family, just to see it several times a day & remind me. Like I said, I've lived with depression for at least 25 years, but this is the first time I've thought abot suicide so often and so analytically. I know how terrible the effect is on loved ones, whicvh is why I wanted to make sure there was so suspicion of it at all. Really the best thing I could come up with was running my car off a cliff, because I wouldn't kill someone else, was pretty likely to accomplish my goal, and it would be believable aftewr my collision with the telephone awhile back, just "spaced out." But there aren't any cliffs around here--maybe something else to put on my poster--so I was forced to keep on keeping on. Now my cousin Lulu is here from San

Diego . You oldtimers probably remember me talking about her; she comes to visit every summer and is truly an angel for my mom & me. Her husband is in Chicago for some Navy training, she flew out to see him, then rented a car & drove down here (central Indiana ) for a short visit. Something else for the poster. I think I could fill that page up pretty fast if I looked around enough. I know that I'll still have ups & downs, but I believe I'm back on my path. Someone warned about higher risk of suicide when you are feeling better, and that's often true. People who are deeply depressed often don't have the energy to act, and when they start to feel a little better, they may then do something. I have some people now to be accountable to--my doctor, who I'm seeing again tomorrow; Lulu; and you wonderful people! The next couple of days will be really hectic, with everyone trying to get over to see Lulu, so if I'm absent don't start worrying about me. She'll be driving back to Chicago Friday afternoon, then I'll hit the ol' keyboard. I'm attempting to attach a photo of my angelic cousin Lulu. Ramblin' Rose Moderator Valentine's Day -- Shop for gifts that spell L-O-V-E at MSN Shopping Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit. Talk now to your Hotmail contacts with Windows Live Messenger.

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February 4, 2007

Clare, have you tried vit E oil for the scars? You can cut open the capsules. I wonder if aloe might give some relief, preferably from the actual leaves. I used to have an aloe plant & usually had a leaf in the fridge for burns, etc. It worked wonderfully, but alas, Brown Thumb Rose managed to kill the plant, which isn't easy to do.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Lyrica & shingleDate: Sun, 4 Feb 2007 14:44:27 -0800 (PST)

Hi,

I hate to butt in again, but I couldn't help myself. I have had those shingles around my bra line off and on for 5 years and tried everything for them. Finally found (online) a site that said when I felt them coming on to coat the inflamed areas with a strong solution of licorice root tea. It worked! Since then I found my source of causes; working on the word processor, especially my left hand/arm/shoulder, triggers the nerve pain that leads down the road to HELL. I also had to quit most of my FUN crafts such as crocheting as it triggers those same nerves to begin their "SHINGLE SIGNAL" I have learned not to overdue any exercise that may trigger the warnings!!!!! I just wish I had known about licorice extract before getting all scarred up. The scar tissue like to become flakey and itchy. Some days I can't wear a bra because the the edges catch on my scars....but I do sleep in bed now instead of sitting up in bed not sleeping a wink at night.

You're right no one in their right mine would wish those SHINGLES on their worst enemy.

Sincerely,

Clare

Darlene Arney <darlene.arney (AT) gmail (DOT) com> wrote: