I have shingles (Varicella zoster)

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Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted 8/29/2014 12:15 PM (GMT -6)   
Well, due to the Benlysta, I have developed shingles. As a kid I had chicken pox, like many of us did. When the chick pox goes away it remains dormant in different areas of the spine and when one becomes immunosuppressed enough the virus comes to life, traveling along the nerves, usually on one side of the body, but can also effect the eyes. Mine traveled on nerves on the upper side of my back and my entire left arm. As it erupts on the nerve endings, red blisters appear which are Extremely painful (it is nerves after all). Doc gave me a potent antiviral and percocet. It's contagious to those who haven't had chick pox, the vaccine, or are pregnant so I can't go in public. Just as well, I'm very tired. I have a strong feeling that my arm covered with red blisters will be scarred. At least it's not my eyes! Nuff said. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 8/29/2014 1:23 PM (GMT -6)   
Yikes! Shingles is NOT FUN.

I know 2 people who didn't get it treated right away and have ended up with permanent nerve damage (read pain). I also have a friend whose elderly father took about 8 months of daily debraiding treatments to get his under control. Really nasty stuff. I sure hope yours heals without any further complications.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 8/29/2014 2:11 PM (GMT -6)   
Donna, I am so sorry. I had it last summer and I feel your pain. Please rest and feel better. Easier said than done, I know.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies, asthma, GERD
Daily Meds: Plaquenil, Zyrtec, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim, Q-Var, Restasis, Albuterol
Daily Supplements: Calcium, B-100 Complex, Vitamin D, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Tylenal, Vicodin, Prednisone.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 8/29/2014 2:18 PM (GMT -6)   
PS. There is a shingles vaccine now, I've meant to ask my rheumy about it next time I visit.

It's recommended for people over a certain age -- 65? -- but with all the strange fevers, etc we Lupies have (that often set off my fever blisters, herpes simplex 1, very similar to the shingles virus) -- I'd like to get the vaccine now, if they'll let me do it. If it's a live vaccine, we Lupies may not be allowed!!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/29/2014 3:55 PM (GMT -6)   
I get the shingles vaccine ever since I got it at age 44. It's not a live vaccine so it's safe for us.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 8/29/2014 3:58 PM (GMT -6)   
You have to keep getting it, it isn't a one-time deal? That's a drag.

And the website I'm looking at says it's live.

I wonder if maybe there are options for both live & not-live?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/29/2014 10:20 PM (GMT -6)   
It's alive?!
The nurse who gave it to me told me it wasn't.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 8/30/2014 5:50 AM (GMT -6)   
Hi Donna, wishing you a short course of it and speedy recovery. My grandmother had shingles and I've seen the pain it can cause, what an awful thing :(

Thinking of you and wishing it was just hiccups. ;)
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 8/30/2014 1:36 PM (GMT -6)   
www.cdc.gov has almost everything you need/want to know about shingles and the vaccine. I read that persons over 60 should get one shingles vaccine. Also it's recommended that those who are immunosuppressed including those who take steroids should not get vaccinated. Those who are healthy, but have had shingles can get vaccinated.

Acquiesce, LOL regarding hiccups. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Cassie1289
New Member


Date Joined Aug 2014
Total Posts : 14
   Posted 8/30/2014 3:22 PM (GMT -6)   
I have post herpetic neuralgia secondary to shingles. I have found the Durogesic patch and neurontin have help me quite a bit. It's painful anyway you look at it. I found help I these meds.
I hope others can too.
Cassie

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 9/2/2014 1:20 PM (GMT -6)   
Wow Cassie. I'm so sorry you have PHN. Luckily I've been taking Neurontin for years and my doc said it's a dosage that should prevent PHN. Thanks for your post. It will certainly help others. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/2/2014 10:27 PM (GMT -6)   
Donna:

(((Hugs))) sweetie I'm so sorry that you now have shingles. My Mom had shingles, hers went onto her face and into her left eye. She was in such terrible pain and it permanently damaged her eye. Her left eye was always dilated after getting the shingles.

I hope that your pain is being well controlled and that you do not end up with a bunch of scarring. How are you feeling otherwise? I know that you've been struggling. I see the surgeon on Thursday and I'll see what he has to say. Will update on my thread as to how I really am.

Just wanted to let you know that I'm thinking about you and Vickie and I are praying for you. I sure hope that I don't get shingles, I've never had the chicken pox, nor have I had the vaccine for it. Since I only have 4 T4 cells they say NO WAY to any type of vaccines

You hang in there Donna and I"m here if you you need me and I'm praying for you daily.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 9/2/2014 11:42 PM (GMT -6)   
Ouch! So sorry you're suffering from shingles Donna. It's definitely NOT fun. I hope it resolves soon.

Interesting reading different info about the vaccine. I plan to get one this year.
SLE, fibro, renauds, restless leg?

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 9/3/2014 11:41 AM (GMT -6)   
Thanks for the support Patty and it's great hearing from you. Barbara that was a terrible thing your Mom went through. I've thought of you often these past several months. I've been so sick with Lupus, Benlysta and mentally incapable with depression it's been close to impossible to come online for anything. I'm very surprised to be on HW now, even with shingles. My new, expensive psych med is worth the money. I'll try to read your update, but know that I truly appreciate your prayers. Love, Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 185
   Posted 9/6/2014 10:49 AM (GMT -6)   
Hi Donna... sorry to hear about you having the shingles... I have heard many people say it is so painful... when our youngest daughter was about 18 mo.. her babysitter got the shingles... and yes... all the little ones did get chicken pox... all at once... I am going to the Dr. Monday and I want to ask him if I can get the shot... feel better soon....

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/4/2014 10:41 AM (GMT -6)   
Hi Everyone. After 3 weeks my shingles was resolving, but then more sores broke out on the same arm. My infectious disease doc increased my Neurontin and Percocet. I've been wanting to see a pain specialist for over a year and it seems shingles pushed my docs to make a referral. I saw him last week and he was wonderful. Very caring and concerned about both my lupus pain and shingles. He will now be one of my regular docs and the only doc from whom I will get pain meds.

I so hate all the medical appointments I have, but I also think they're necessary. I'm going to physical therapy once a week and she is gentle, but also knows exactly what exercises help. Now I just have to make myself do them at home. Tomorrow I get my monthly IVIG infusion. The last one took 5 hours (a new record). My monthly Benlysta infusions take about 2 hours. I used to make only one appt per week, but now I sometimes must make 2 or 3. It can really wear me down both physically and mentally.

I have finally noticed an improvement in my health (however slight) after six months of Benlysta. My hubby has noticed this also and we both think I need to continue the Benlysta even though it depletes my immune system, leaving me at risk. Hopefully the IVIG will help that. Well that's enough of an update. Bottom line, I HATE all the appointments, but currently have a good medical team. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/4/2014 2:44 PM (GMT -6)   
Glad you're getting some improvement. Any improvement is a bonus in my book.

I hate seeing doctors too. I feel like a pin cushion with all of this bloodwork.

My wallet has an echo from this illness too.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/6/2014 12:38 AM (GMT -6)   
Hi Donna:

Sweetie I know how you feel about the appointments. They do wear us down and are hard on us, it's bad enough that we're sick. Then we have to drag ourselves out to our Doctor's appointments. I know that as of right now Fridays are my only day that I don't have to see anyone or do anything medically related.

I do Physical therapy on Monday and Wednesday. Pulmonary Rehab Tuesday and Thursday. I see my Therapist on Wednesday Afternoons. I seem to spend all my time either driving to or from the hospital. It's exactly 19 miles one way to the medical center I'm treated at. I had to fill out some paperwork for SSDI last year accounting for all my Dr appointments. Well, once I put them ALL into a spread sheet and my average was that I spent 22 days a month at the medical center. My Doctor saw that number and said, "Barbara, coming here is your full time job". Donna try not to let this aspect get you down okay. Try to look at it as just something you have to put up with for the time being.

I hope that your shingles improve and you get NO MORE new rashes. I saw that you think you may be feeling better and things just might be looking up for you. I can't be more than happy for you You keep up the good work sweetie.

I hope that you're sleep since I'm not LOL. I'm going to go to bed now though, since it's 2:41am. You take care and let us know how you're doing when you feel up to it . Praying for you Donna.
Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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