Shingles

[Jaha]

Has anyone had a bout with shingles since they have been treated for Wegs? It started out itching where my scar was from my lung surgery with no break out.I was in the ER twice last week with chest pain and SOB.The 1st visit they did heart workup, labs and CTscan of Lungs and said it was probably a flare. I called my rheumy the next day and she didn't seem to think it was a flare. Two days later I couldn't take the pain any longer so back to the ER, while I was waiting to be seen, I started to break out with a red rash on my back and under my breast. I also had incredible pain and am still having alot of pain with this. My whole left side of my back has erupted. They put me on anti-viral meds and pain meds. I have to be off of my Cellcept while I'm on the anti-virals. I think having the infusions of rtx in March and the cellcept must have been a little much for my body to take.

Jana

[Psyborg]

Sorry to hear this. I haven't had to deal with this, but I feel for you.

[Pete]

That's an ugly combination. Hope the shingles clear up quickly and you don't have a wegs flare.

As a reminder to all readers over age 60 - you should have a shingles immunization when you reach age 60.

Pete
dx Jan 2011

[Al]

That's an ugly combination. Hope the shingles clear up quickly and you don't have a wegs flare.

As a reminder to all readers over age 60 - you should have a shingles immunization when you reach age 60.

Pete
dx Jan 2011Pete--I had the vaccination,, but still got shingles.

Jana--This is a nasty "side effect" of immunosupression. Anyone who had chicken pox as a kid still has Varicella zoster virus lurking within them. Usually dormant because the immune system is on guard, when the IS gets bashed, the bad guys come out to play. Major stresses can exacerbate the situation; mine came less than a month after my last CTX infusion (of that set), during a heavy work period, and just as both kids got married within six weeks of each other. Shingles is, I can tell you from personal experience, horrifically painful, and totally enervating. (If it is any comfort, there are even worse opportunistic viruses that can come to the fore.) The only thing that gave me comfort, though temporary, was a hot bath with a bunch of aloe vera dumped in. Even worse, shingles can set a Weggie for another flare, and not just because you need to go off immunosupressive drugs to deal with the virus. (This happened to me.) Speaking of dealing with it, it is worth noting that anti-virals only help if started no later than 24-48 hours after the outbreak. But, unless you have already had a bout of shingles, you might not realize what the rash is until it is too late. Truly, an ugly piece of work.

Al

[Pete]

I keep forgetting that all bets are off with wegs and other issues.

Pete

[Dryhill]

That's an ugly combination. Hope the shingles clear up quickly and you don't have a wegs flare.

As a reminder to all readers over age 60 - you should have a shingles immunization when you reach age 60.

Pete
dx Jan 2011

Pete, some people on this site have had problems with having extra drugs pumped into them, so I would be a bit careful about blindly getting immunized.

Jim

[drz]

That's an ugly combination. Hope the shingles clear up quickly and you don't have a wegs flare.

As a reminder to all readers over age 60 - you should have a shingles immunization when you reach age 60.

Pete
dx Jan 2011

Be sure you are not allergic to any of the ingredients. I was all set to get one but found I had an allergy that contraindicated getting the injection. This was before my diagnosis of Wegs.

[Sangye]

I hope it clears up quickly, Jana. And I hope the Wegs dog doesn't think this means he can wake up and run his muddy paws all over your lungs. Hang in there. :hug2:

[Sangye]

The shingles vaccine is a live virus vaccine, and therefore **NOT** appropriate for immune-suppressed people. Even the CDC (http://www.cdc.gov/vaccines/vpd-vac/shingles/vacc-need-know.htm) says so. Even if you're only on pred you should not be getting it.

[Pete]

Hello All,

Point well taken. I got immunized before I got wegs. I'm learning more about this damned disease every day, and I don't like much of what I learn.

Pete
dx Jan 2011

[Jaha]

Thanks to all for your well wishes. I'm hoping this doesn't last long, because it is very painfull and making me crazy. I was able to find a homeopathic gel at the local health food store that seems to relieve for a while. Also an oatmeal aveno bath helps somewhat. I guess we all have to endure whatever comes along and keep a good attitude,but very hard at times.
Jana

[Al]

Thanks to all for your well wishes. I'm hoping this doesn't last long, because it is very painfull and making me crazy. I was able to find a homeopathic gel at the local health food store that seems to relieve for a while. Also an oatmeal aveno bath helps somewhat. I guess we all have to endure whatever comes along and keep a good attitude,but very hard at times.
JanaIt does get better, Jana. For me, the worst was over in about four weeks, though even now--nearly two years later--I occasionally get a flash, and I have permanent damage to surface nerves across my belly.

My vaccination also was before my diagnosis. Perhaps it helped some; I don't know. The shingles could have been even worse, I suppose. Most nerve meds are not kidney friendly, so I just coped the best I could.

Hang in there!

Al

[Sangye]

I hope it eases up quickly, Jana.

[crackers]

i had a serious attack of shingles 3 months before my health took a downturn and was later diagnosed with wg.seems more than a coincidence.i often wondered if there was a connection.
john.

[Al]

i had a serious attack of shingles 3 months before my health took a downturn and was later diagnosed with wg.seems more than a coincidence.i often wondered if there was a connection.
john.Likely, John. A couple of papers have been written in the last year regarding the correlation between WG flares and CMV. (CMV is CytoMegaloVirus. V. Zoster, which is the shingles virus, is a form of CMV.)

Al

[Rose]

I am feeling OK, best I have been feeling for a while so when I develop three large blisters on an inflamed area the size of my palm on the left side of my back I decide I would only go to the doctor should the rash get worse or I begin to feel unwell. The blisters itched a bit (which brought my attention to them) and the center was filled with a yellow fluid. My first thought was some insect had been having a feast on me so I applied some antibiotic cream. The 'insect bites' happened 12 days ago. I did not develop other blisters and after about a week the blisters burst and today I have three black scabs where the blisters were. The inflammation is all but gone. There was never any pain!

I have since "googled" the skin rash and found that my rash is typical of Shingles and from my research I have found that although rare, a mild case of shingles can occur without the pain and few people have actually been surprised to discover that what they also thought was some sort of bite was actually shingles. Have I been one of the very few lucky ones?

[Al]

Rose, I would say you are "lucky". Some shingles sufferers get it in the facial regions and can lose their sigh, or worse. In that sense, I was lucky too, since mine was just across the abdomen. It also started as a rash, on my left side, then moved around to the back. Beyond the pain, I could hardly move for maybe 3 weeks.

Al

[vdub]

I got a shingles shot about 3 months after I ended my mtx. The doc felt my immune system would handle it just fine. He was right -- no problems. Glad I got it. I'm not sure it will prevent shingles or be a weaker case if I do get them, but what the heck.....

[Al]

I got a shingles shot about 3 months after I ended my mtx. The doc felt my immune system would handle it just fine. He was right -- no problems. Glad I got it. I'm not sure it will prevent shingles or be a weaker case if I do get them, but what the heck.....Keep those fingers crossed, vdub....

Al

[Lightwarrior]

Jana,
I so feel for you. I just got over (what am I saying, I am still have postherpetic pain and have two lesions that have not healed yet). I had what my doctors told me was the worst case of shingles they ever saw. I get kidney stones and have had two children and I can tell you that this pain is worse than both of those combined. Here is what helped and what didn't.

Neurotin helped more than anything along with guided imagery or any kind of diversion. Stay in quiet, cool, calm environments, my granddaughters running through the house screaming with delight would send me into immense pain.

Pain killers did not help at all except when I had to go the wound care clinic to have my lesions debrieded.

Good luck and I will send you lots of light and energy.

[Al]

I'm with you. Lightwarrior. The shingles pain was worse than any I have ever had, including the time my thumb was torn off its joint. (Comparatively, WG was a breeze, except for the emotional pain!)

One note: Neurontin and other nerve drugs are not very kidney friendly, so they are counterindicated for those of us with dicey kidneys.

Al

[Sangye]

Jana,
I so feel for you. I just got over (what am I saying, I am still have postherpetic pain and have two lesions that have not healed yet). I had what my doctors told me was the worst case of shingles they ever saw. I get kidney stones and have had two children and I can tell you that this pain is worse than both of those combined. Here is what helped and what didn't.

Neurotin helped more than anything along with guided imagery or any kind of diversion. Stay in quiet, cool, calm environments, my granddaughters running through the house screaming with delight would send me into immense pain.

Pain killers did not help at all except when I had to go the wound care clinic to have my lesions debrieded.

Good luck and I will send you lots of light and energy.
Yikes, Light. I'm glad you're on the mend. It sounds just awful!! :sad:

[Jaha]

Well I going on my 3rd week of this ugly nerve pain and there is no amount of pain killers that can touch it. The rash is slowly disapearing but as it does the nerves, seem to trigger up more. I thought I could handle about anything or any kind of pain, but this is just almost to much. Lightwarrior, your right about staying calm and trying to not get to excited. I have been using alot of ice packs and topical gels. I called my pcp yesterday and ask her to call me to see if there are anymore pain relief options, I have not tried Neurotin yet. I'm not very familuar with that drug. Just wanted to give you all an update. Thanks so much for your caring thoughts and wishes.
Jana

[pberggren1]

Jana it is good you are using ice packs and gels instead of stuff like ibuprofen.

I hope you get some answers soon.

[Sangye]

Jana, you might check with a holistic doctor to see if they can help. In chiropractic the cause of a shingles outbreak is often a misaligned rib. The nerves between the ribs (intercostal nerves) branch directly off the spinal nerves. There are holistic remedies for the pain which may also help shorten the duration as well as decrease the chance of continued pain after the infection resolves.

[me2]

I don't know about Neurontin for this specific use but I can say it helped me with my central nervous system damage. I read up on it several years ago as I was trying to find help for my self. My doc didn't have much to recommend for my suffering so I asked about Neurontin that I had been reading about.

He said "Yeah, you can try it if you want". Well, it was better than doing nothing huh? It works well for me to manage the discomfort of the damage I have. I feel almost normal and I have no side effects (that I know of).
I remember reading way back when that Neurontin got over prescribed when it first came out because it seemed to work for so many things and then it got stigmatized as being a fix all that didn't REALLY fix everything, so then docs were reluctant to prescribe.

Sort of like the story Valium went through. This is not a benzodiazepine drug like Valium.
The generic name is gabapentin. I've read up on it many times and still can't quite figure it out. It works for me anyway. ha
I hope you get relief in some form soon.

[Sangye]

Even though it does help some people, Neurontin can have pretty scary and troubling side effects, like profound memory loss, seizures, loss of coordination, to name just a few. Some can persist even if you stop the drug. If you take it you should be well-informed about the potential side effects and report them immediately.

[me2]

Even though it does help some people, Neurontin can have pretty scary and troubling side effects, like profound memory loss, seizures, loss of coordination, to name just a few. Some can persist even if you stop the drug. If you take it you should be well-informed about the potential side effects and report them immediately.

Good advice as usual. When I began taking Neurontin it was probably not explained to me in such great detail given the extreme discomfort I was in. I do not have words to describe my personal hell.
Kinda like we don't focus too much on what Cytoxan does when we are so bad off we need to take it. You inspired me to read up on it. I have reduced the amount I have been on the past few years by half in the last months , now I will work on getting it to zero. Interesting that I read it is not metabolized by the body and this is one reason it is hard on the kidneys. I thought it was more innocous than it is. I guess this is due in part to the great relief it gave me from crippleing neurological discomfort. I hope I am healed from that now enough that I can get off the neurontin.
I have been in such a survival mode I gave up for a long time worrying about what drugs I was on. Its a good sign that I am reducing and thinking about reducing.
The boat has taken me across the river and I wouldn't mind leaving it behind.

[Al]

Even though it does help some people, Neurontin can have pretty scary and troubling side effects, like profound memory loss, seizures, loss of coordination, to name just a few. Some can persist even if you stop the drug. If you take it you should be well-informed about the potential side effects and report them immediately.Yes. Plus, as I have said before (and it is still true), neurontin, like most nerve drugs, not kidney friendly.

But I will say, Jana, that it does get better. Not as fast as the dermatologists say--after all, our immune systems are purposely whacked down. But it will get better.

Al

[Sangye]

I have been in such a survival mode I gave up for a long time worrying about what drugs I was on. Its a good sign that I am reducing and thinking about reducing.
The boat has taken me across the river and I wouldn't mind leaving it behind.
Me too, me2. :wink1:

[randyt1]

I had shingles in 2009, very painfull my DR. told me chicken pox virus causes this, I hope I NEVER GET IT AGAIN..

[Al]

....Its a good sign that I am reducing and thinking about reducing.
The boat has taken me across the river and I wouldn't mind leaving it behind.Ah, Nostalgia, Kirk. My mother used to sing to us kids: "There;s one more river to cross...." I'm sure it was an Appalachian tune, as I also heard my aunt sing it too. That river, of course, was Jordan, where we lease all our cares behind. I'm sure most Weggies would be all for the leaving the cares behind part, if only we could do it on this side of the river. I guess leaving the pred behind is a decent start! Anyway, the memories flood back. Happy Mother's Day, Mom--rest in peace!

Al

[Al]

I had shingles in 2009, very painfull my DR. told me chicken pox virus causes this, I hope I NEVER GET IT AGAIN..I;m with you Randy. V. Zoster is one nasty virus.

Al

[Lightwarrior]

Even though it does help some people, Neurontin can have pretty scary and troubling side effects, like profound memory loss, seizures, loss of coordination, to name just a few. Some can persist even if you stop the drug. If you take it you should be well-informed about the potential side effects and report them immediately.

What should I report immediately?? JUST KIDDING

[Lightwarrior]

Me too, me2. :wink1:

me three m2

[Jaha]

Thanks for all your thoughts and suggestions. I just wanted to update you all, on my ordeal. I ended up in the local hospital ER on 5/15 after several days of fever that would not come below 100.9 and was very weak,my pulse ox was 72. They admitted me overnight with the promise of transferring to CC the next day. That was a real battle, so I was discharged and rode 4 hrs in a car, and got admitted to CC hospital with pulse ox of 82 and very lethargic. Long story short, I had pneumonia, and also after having the 2 infusions of rtx in march, they did a CT of the lungs and I have new areas of the Weg's flaring up. They did put me on Neurontin for the shingles pain and also new antibotics for 10 days. I now have to follow-up with my Rheumy and see what the next plan is.
Jana

[Pete]

Hope the new treatments speed you toward recovery. You've had quite a spell with this.

Pete

[Al]

You've been through it for sure, Jana. What are they doing about the flare?

Al

[Jaha]

I have to go back to CC to see the rheumy after I'm finished with these antibotics and I guess we will plan from there. I'm currently on 20mg of preds per day,bactrium MWF, but have to stop the Cellcept while on antibotics. So I will find out after I get over the shingles and the infection.
Jana

[Lightwarrior]

I have to go back to CC to see the rheumy after I'm finished with these antibotics and I guess we will plan from there. I'm currently on 20mg of preds per day,bactrium MWF, but have to stop the Cellcept while on antibotics. So I will find out after I get over the shingles and the infection.
Jana

How are you feeling? Is your pain better? there is a treatment called QUETZNA. This should be done at your providers office, it is a capsacian patch that they apply and leave on for an hour. After they remove it you should get up to 3 months pain relief if you have the postherpetic neuralgia (I do). Here is the link:
Qutenza® patch for relief from post-shingles pain (http://www.qutenza.com/)

[Jaha]

In general I am feeling better everyday. I will definitly check that treatment out with my pcp. I was using a capsacian cream, that has helped with the pain,so maybe QuetZna would be even better. Thanks for the info. I think it is going to take me awhile to bounce back to what ever is normal for me.
Jana

[Al]

How are you feeling? Is your pain better? there is a treatment called QUETZNA. This should be done at your providers office, it is a capsacian patch that they apply and leave on for an hour. After they remove it you should get up to 3 months pain relief if you have the postherpetic neuralgia (I do). Here is the link:
Qutenza® patch for relief from post-shingles pain (http://www.qutenza.com/)

They say that capsacian patches are iffy (though not specifically ruled out) when high blood pressure or vascular anomalies are involved. WG sufferers have, by definition, vascular anomalies, and high blood pressure comes standard with most cases of kidney involvement. So be sure your doctor is aware of all this.

Al

[Dryhill]

Thanks for all your thoughts and suggestions. I just wanted to update you all, on my ordeal. I ended up in the local hospital ER on 5/15 after several days of fever that would not come below 100.9 and was very weak,my pulse ox was 72. They admitted me overnight with the promise of transferring to CC the next day. That was a real battle, so I was discharged and rode 4 hrs in a car, and got admitted to CC hospital with pulse ox of 82 and very lethargic. Long story short, I had pneumonia, and also after having the 2 infusions of rtx in march, they did a CT of the lungs and I have new areas of the Weg's flaring up. They did put me on Neurontin for the shingles pain and also new antibotics for 10 days. I now have to follow-up with my Rheumy and see what the next plan is.
Jana

Before you had rtx did you have a course of ctx and did it do any good? Presumably not hence the rtx.

Jim

[Jaha]

Just a follow-up, I have one patch of shingles left over on my back, pain is managable. Jim to anwser you question, I have been on Mtx,immuran,Ctx and now Cellcept before the infusions of rtx. I just recently had to be hospitalized at CC for pneumonia and when they did the CTscan of the lungs, I have some new areas of Wegs. So I go back to the dr on June 12th to see what else she has up her sleeth. I'm a little disappointed that treats of rtx hasn't worked.
Jana

[Al]

Just a follow-up, I have one patch of shingles left over on my back, pain is managable. Jim to anwser you question, I have been on Mtx,immuran,Ctx and now Cellcept before the infusions of rtx. I just recently had to be hospitalized at CC for pneumonia and when they did the CTscan of the lungs, I have some new areas of Wegs. So I go back to the dr on June 12th to see what else she has up her sleeth. I'm a little disappointed that treats of rtx hasn't worked.
JanaI'm glad the shingles is abating for you, Jana. Now, they may want to kick in the RTX treatments in earnest. Let us know how the treatment, whatever it is, works out.

Al

[Sangye]

Hot diggety for saying goodbye to shingles, Jana! :thumbsup: