Tuesday, February 07, 2006

Shingles - ARGH!!

Okay, so what the heck?!?!? I took my Friday night shot in my left hip and quickly noticed a little red spot afterwards. Well, that little red spot has grown and then over the weekend I noticed a couple more red spots in my front... same level as the one over by my hip.
I kept telling my husband that I was sure I didn't take my shot so far over where I can't see the spot unless I look in the mirror. And the spot was itching and now to the point of burning.
So I went to the doc today who said, "You've got shingles!" Lovely!
So then I get back to work and my husband who was home again with our sick son did the online sleuthing that I sometimes frown upon. He called me and said, "Call your neurologist, seems like there is a problem with Shingles and MS."
So I called my neuro's office and the nurse immediately got me a script for neurontin.
Anyone ever take this stuff before?
I took the first pill just now despite the fact that the drug facts seems to be a little freaky reading. ARGH!!!!
Anyone ever have shingles with their MS before? What was the outcome? What was the duration? What meds did you take with it and what MS meds were you on when you took the meds for shingles?
I'm just curious. Okay, not just curious, a little more anxious for info.

On another note, my doc asked how the antidepressant was working and I have to say, I'm doing pretty well on it. Hey, I have a burning, itchy rash on the top of my arse and I'm not crying. That's gotta be a plus!!

Well, please anyone respond if you've had shingles and you have MS. Please. Thanks so much for reading!!

40 comments:

mdmhvonpa said...

HOLY CRIMNY! Shingles even. You know, I've seen people hospitalized for that. Be very careful. Fortunately, I got pox as a child so I'm not suseptible. The Mrs, however ... well, we'll see.

Pamela said...

Actually, the docs told me that Shingles is what you get if you had chicken pox as a kid. That we're suseptible as adults to get it.
Yikes - huh? It sucks!!

Suzy said...

I hope your feeling better soon!! Neurontin and I didn't get along...weight gain came along with it. I'm liking the Lyrica the Neuro just put me on. I think it's actually helping in the pain department.
I think I need a new anti-depressant though....I'll hafta look in to that. Oh well....like I said, hope your feeling better soon!

Wendoll said...

I had a great experience on Neurontin. Took the edge off the pain (not shingles)just my regular MS pain. I also had a disc fusion where the spinal cord has scar tissue that causes pain. I just had a baby last month and am waiting to be able to start my mediction again - after nursing. I was on Betaseron injections as well.

Miss Foot said...

Hi...I am 48 yrs old and was diagnosed with MS in 1992. I have been fortunate in that I have been able to lead a very active life. I have horses and am constantly outdoors. Last week I noticed increasing fatigue and flu-like symptoms(minus the fever). Now I have red patches on my left side that are extremely painful. I believe I am the victim of shingles. I will know after I see my doctor in a few days. I have been pretty stressed out in recent months and am convinced that stress accelerated the shingles. Wow....they are extremely painful and the pain is very deep and debilitating. I hope I can get some relief through meds.

Sandi said...

I have MS and got the shingles last week. My Dr. prescribed Valtrex 1000mg taken three times a day. It is supossed to shorten the lenghth of the Shingles. Also my Dr. prescribed Lidoderm patches for the pain. It seems to have helped a lot. I have been on Tysabri for 1 yr. I am hoping I will be able to take my infusion next week.

Anonymous said...

Names Bob.
Age 42. Do not have MS, but looking for a correlation. When you have smallpox earlier in life, its affects come and go, but much like Herpes, the virus never goes. It will lie dormant in your body for decades. It hides in nerve cells. I can only conclude that it is protected from antibodies because it hides beneath Myelin sheathing. Were antibodies do not go.

Being dormant for decades, it (the Chicken pox virus) is possible for it to at some point release itself and do it's dirty work.

My shingles started at the spinal cord area between the shoulder blade, snaked up over my right shoulder, and dotted their way down the peak of my bicep, rolled over the elbow toward the center of the outer fore arm and and gravitated towards my index finger.

Doc gave me Valtrex ( ideally taking withing three days of out break) and and a steroid called Prednisone.

Nothing wrong with going online and educating yourself 'bout mysteries of the body and how drugs work and interact

cookgirls4 said...

i was wondering if their is a link to m.s. and shingles i am not diagnosed m.s. i had a spell some time ago and the doc said maybe m.s and i blew it off quickly because i felt so much better but i got the shingles not to long ago and caught it fast doc gave the meds and it helped tons he also gave me lyrica anthor thing is i found out recently that m.s. can be ok for years ?

Bea said...

I have MS and just have been dx with shingles. You have to have had chicken pox to get shingles. The Doctor said is also prevelent in people with auto immune diseases such as MS. I get my medicine in the morning. At first it looked like razor burn and then I noticed it was spreading across my chest. Under arm really hurts. It is also heriditary, my mother and brother have both had shingles. My mother had Parkinsons and my brother is a diabetic.
Bea

Anonymous said...

hello there !
I was diagnosed with shingles yesterday , was diagnosed with ms in 2002.
The rash is on my forehead and following my trigeminal nerve. Hurts like hell ! And got a urinary tract infection as well. Lol. Not doing too well really

Found this blog while googling for info and wanted to send a hug for this

Jennifer (from the UK)

Dana said...

I have had MS since 1991, diagnosed at 20 years old. I have been on Avonex for almost 7 years. Thank God I am an active, working, mother of two teenagers. I was diagnosed with Shingles this morning. My doc gave me a 10 day course of Zovirax. I'm just looking to see if there is some kind of link between MS and Shingles and if I need to be on the look out for a MS flare up. It sounds like these two diseases often "compliment" each other. Odd?

silverman said...

I also wonder about the connection between shingles & MS. Is it more common in people with MS?

I've had MS for about 6 years (diagnosed at age 46) and suddenly realized that the painful, block-like rash on my lower back that I had developed is just like the ones I teach 3rd year med students about in my Anatomy course. I haven't yet had an official diagnosis, but I'm certain it's shingles.

I hope yours (and mine!) goes away fast and forever. As if we don't have enough troubles....

Melissa said...

I'm 27 and was diagnosed w/ MS about 2 yrs ago. I've been going through a rough relapse latly than I recently noticed a rash under my chest and throughout my left side. I thought it was just from the heat (I live in FL & the heat kills me) lol! but recently found out it was shingles. I'm going to the dr tomorrow, but everyones response helped my questions alot. Thanks everyone.

Nancy said...

I have MS and I was just diagnosed with shingles on Wednesday. I had shingles when I was 19 but didn't have MS then. It's sooooo painful. It's under my arm. The doctor put me on neurontin and said it would take 48 - 72 hours to get in my system. I thinks it's supposed to help with the pain. We'll see. I don't like to complain and rarely mention my MS this shingles? Ouch, ouch, ouch. I wouldn't wish this on my worst enemy. Hang in there my friend. I did hear that there is a vaccine for shingles and I wouldn't mind taking it. I sure don't want to have this EVER AGAIN!!!!!

Anonymous said...

Dx with ms 35 years ago, and shingles yesterday. Thought I was having a relapse until the blisters started showing up. While the blisters/rash is definitely very painful, it's the deep pain that is overwhelming me. My left side below my waist is very, very painful deep inside. My foot hurts, but there it is the blisters that are on the bottom, arch, ankle,and top of my foot that make walking very difficult. On Valtrex, and have tried codiene and vicodin without much relief. Also using Lidocaine patches which do help. The rest of my blisters follow my spine.

BTW, I had the vaccine for shingles 6-7 years ago. My md said it's effective in about 45% of people, but they still do not know how long it is effective for. Based on my experience I would NOT do it again.

Anonymous said...

Are there any new ideas on this? My daughter has had MS for several years and she is 32. Had VERY severe outbreak of shingles and is in the ICU now with very bad pain. It's a very advanced hospital and they are trying everything they can think of but it is very slow going and little improvement. She can't even get out of bed and has been there a week now. Looking to see if anyone has had success with pain meds? Neurontin doesn't work. Can't even touch her so Lidocaine patches can't be used. On heavy meds including dilaudid, oxycodone, ativan, etc. etc. ANY thoughts from others who got some type of pain relief is welcome. Although she's better now than a week ago, she's miserable and we could use some ideas. Thank you for reading!

Anonymous said...

My father was diagnosed with MS 12 years ago and has been doing pretty well until approx 2 months ago when he got shingles. He has had a very difficult time...rash on left side under chest, and also he is experiencing a severe MS flare-up. Last week he had 3 days of steroids intra-venously (can't remember the name sorry!). And yesterday he was admitted into hospital with expremely swollen lower left leg. It is not thrombosis but possible a reaction to the steroid infusion....has anyone heard of anything like this? Also, am interested to hear if anyone has recovered from such a shingles/MS flare-up?? My dad is really really hoping it is just that-a flare up-and not a significant deterioration. 2 months ago he was playing golf and today he cannot walk or use his hands... :((

Anonymous said...

I can't believe this! I get shingles on and off since around 1994. First attack was the left side of my body (neck etc), but since then it always comes on my left side or recently right side of my lips. It's horrible especially since I am a music teacher who plays trumpet. When I get shingles, I cannot play. I take Valtex and have a constant supply on hand. If I am lucky enough to "catch" it - it is better but this is not the norm. I remember talking to my dr assistant on the phone who said that shingles is caused by stress. I told her then I must be stressed 24 hours a day because I get them all the time.
Ok now fast forward to dec 2012- when I was diagnosed with MS. Speech related/ cognitive. Have been on Copaxone since early February. I was just searching the net to see if there is a correlation to either copaxone or ms itself to gout. As I've had at least three gout attacks since I've been on copaxone.

Has anyone else had gout and or shingles along with ms?
This is just getting out of hand, isn't it?

Anonymous said...

I have had recurring cases of shingles for the past 2 years. It always occurs under extreme stress and around the time I am having a flare. Sometimes it is mild and other times it is extremely painful. With the first occurance I was on Copaxone for the first time for 6 months. I read somewhere in the clinical trials for Copaxone that some subjects had occurances of shingles or some form similar outbreak. I also read the same for the other injection treatment. I called the CDC and they informed me that it is very possible for people with MS to get recurring shingles and my possiblely get missdiagnosed as have Herpes Symplex orContact Dermititis. I believe there is definately a correlation between MS, Shingles, and injections.

Jennie Leach said...

Hello I have MS and I had the chicken pox twice when I was in school. I thought I would be clear from this but I think I am wrong. On Monday I took my shot everything was fine. Weds shot well I notice a few red bumps. I just thought it was something else tell you the truth. I told my mom about it due to she has had shingles. She looked at the red bumps and she said yes it does look like shingles Now it's Friday night and my doctor is not in over the weeken I just hope it shapes up soon.

Patricia Fletcher said...

Ok here's my story.
I've had MS since 1998 and to look at me you'd never guess it...my left side is the side I have trouble with as far as numbness and weakness etc. Been on Copaxone 20mg (inject every day ) for the last 3 yrs. Recently a month ago I switched to the new 3X a week Copaxone 40mg injections. Mon, Wed and Fridays I inject. Well...now I have shingles never the less....SHEESH!!!
Last week I was feeling extremely tired and felt feverish...thought I just over did it with the kids at school I work with...figured I have MS and I'm just stressed. I am the type to fight everything....I push and push and PUSH until I collapse...they say it's from my military background I reckon lol. This past Friday I saw a small rash on my left mid back approx a 2" oval with little bumps around it Friday. Thought to myself a spider must have bit me...boyfriend thought the same thing. By Sunday I had another on my left side. At first it didn't hurt to touch the area although it felt strange. I went to my pain doctor Monday and before I left I asked him what he thought of the red bumps. He immediately got online and showed me SHINGLE pics. Faxed my primary doctor and said that I needed to see him ASAP. I finally got in to see my primary doc yesterday and he listened as I told him what's been going on with my body. I tried getting a shower and the water burned my left side, it feels as though someone punched me all over and beat me up! I cannot lay on my left side and back...right side only...my bra hurts to wear it so I took it off. He called in a viral medication and said take it 3X a day then come back to see him in two weeks.
Last night I barely slept. It hurts when I breathe...lay down, walk, across my diaphram left side, neck and back it feels as though someone beat the crap out of me!!! etc etc. YIKES! OMG!!!
Soooo is it possible that this stress, MS and new 40 mg Copaxone medication brought this Shingles on? Any help would be greatly appreciated! Thanks bunches!

Trish in Ohio
mommykat42@yahoo.com
I am miserable today!

K Green said...

I just got diagnosed with Shingles today. However, I take Neurontin for my nerve pain due to MS and it helps (not as well as Lyrica did, but medicare won't cover that). I won't take narcotics so its the best I can do. Lidocaine patches help, but don't put them over your open shingles rashes. Good luck!

christina vanderveen said...

Actually I was diagnosed with ms about two years ago. I have been on a cocktail of mess including neurontin and I came down with shingles about six months ago. I upped my dose of the neurontin for pain and got some painkillers from my doc. Ms sucks but with shingles it's pretty unbearable. I tried hydrocortisone cream on the rash and lidocaine ointment. Worked pretty well. Rash is gone but I have a scar now that looks like a giant bruise. The neurontin is great. Really helps. I haven't learned how to cope yet with this disease it seems the docs are still trying to find the best methods of treatment. So for now it's a day by day thing. I am ok but it feels like one giant flare up. Any help or advice from people living this way would be appreciated. Thnx.

Donna coles said...

I am on tysabri for my m.s and developed shingles last week. Left leg, knees, and hip. Ouch! Does anyone know if I will still be able to have my infusion while having shingles? I'm 44 years old
Thank you

DLB said...

I have M.S. and was Dx'd w shingles. Excruciating pain as its on lower back, buttocks, and vagina. I'm normally on neurontin bc of m.s. but oxycodone and morphine bc of shingles! I never take pain meds (just neurontin)! It horrible. As if M.S. isn't enough! Blessings hope things get better and she finds the relief she needs.

Anonymous said...

27 year old Melissa: I read that you suffer from the heat in Florida. I live in Tn. And this southern heat is the #1 enemy of MS patients. I contacted the MS Society online and found out they would provide me with a cooling vest with a script from my Neuro Dr. It has helped and enabled me to be outside a while longer than I usually do. This organization is a wonderful resource for all MS patients. Thought this info might improve your quality of life. I have had MS for 13 years and I have moved into secondary progressive now. Good luck with this information.

Francis DellaVecchia said...

RRMS since 2000...developed Shingles Belt on right side midsection 5 days ago. Home doctoring, no insurance. Hope everyone does OK...thanks for information I've read so far.

Anonymous said...

I was diagnosed with MS a few years ago. I had my first case of Shingles 5 years before being diagnosed with MS just had my 3rd case of Shingles and it's lasted about 6 weeks. I also have Neuropathy in my feet. I don't take any perscriptions for MS, Shingles or Neuropathy, Magnesium Citrate 3 times a day 100mg each time, try not to stress and not get overly tired. I use Lidocaine on the Shingles and just let it run it's course. I take Methacobolin sublingual B12 1,000mcg to help with the brain fog.

Brenda Drew Designs said...

Hi~ I was diagnosed with MS a couple of years ago. I'm 67 years old. I got it first in my 40s and then it went into remission for years...no problems with it until I got into my 60s. Now I've been diagnosed with shingles for the first time~ it felt like an insect bite on my right side of my back mid way and then I felt that band. Got on a prescription drug for it 3 x's a day and tonight I noticed a couple of itchy painful bumps on my chest. I had chicken pox when I was six. My oldest daughter had chicken pox, so did my middle daughter but my youngest daughter got the vaccination for chicken pox. I hope it doesn't get any worst than this and that I caught it in the bud. As soon as it clears up I'm getting that vaccination for shingles and hope and pray I don't get this again. Having MS is bad enough! Thanks for your posts...I written down some of the things that worked for you and hope they work for me as well.

Anonymous said...

I have had rrms since 2007. Was on rebif but now take tecfidera which has worked great. I got my first and hopefully last case of shingles 3 weeks ago. I am also a nurse. Most painful thing I ever had. I was actually hospitalized for the pain. Had the pain for 2 days and was receiving IV dilaudid which was the only thing that relieved the pain,before the rash showed up so no one could figure out what was wrong with me. As soon as I saw the rash I knew what it was. The sooner you get started on an antiviral medication the better your treatment will be and hopefully shorten your bout of shingles. They should subscribe something like acyclovir for the actual virus and then neuron tin for the nerve pain. I have also been on narcotics and lidoderm patches really help. With all that I am still in too much pain to work. Nothing seems to get rid of the pain that feels like an electric shock to the area. If anyone has had any luck with any other form of pain relief I would love to hear it. I am 3 weeks into this and don't know how much longer I can take this pain.

Janie Skadden said...

I was diagnosed with MS in 1992 or 93, having 3 attacks and laying dormant until 2007, my symptoms are mainly tingles on both feet all the way up my legs, left side is more intense than the right. I've been on Copaxone 20mg daily injection changing to the Copaxone 40mg. 3/Week since July 1015. I turned 60 last October and I had my first attach of shingles last week. Horrible stinging pain that runs from my mid vertebra down my left buttocks coming down the inner part of the left leg appearing over the front of the leg crossing over my knee to continue down my calf stopping 4" above my ankle. I've been on antiviral 3xdaily pills since Monday, the doc also gave me 5 days worth of steroids and Tylenol 3 for the pain, which is not doing much! my rash is not as raw looking anymore and looks like hey are starting to dry. Yesterday I was feeling pain wise a bit better but today the tingles are so intense in both feet and running up and over my knees so I'm wondering, could I be having a MS flare up? I'm wearing a skirt and nothing covering my legs since the shingles. I do not wish this to anyone and I hope I never go through this again.

Unknown said...

Actually, you're totally susceptible. It's people who HAVE had chicken pox that get shingles!

Diane Duell said...

I was diagnosed with MS in 1999; I am 55 and rarely have a relapse so I usually feel blessed.

Two weeks ago, on the day after Memorial Day 2016, I was told my rash is shingles. I noticed what I thoought was "heat rash" the previous Tuesday (yes, a whole week had passed, due to the holiday weekend).

My PCP put me on Valtrex for 7 days and Hydrocodone for just 6 doses. I am experiencing lingering pain, while the rash is fading. I also have noticed an increase in pain from skin sensitivity.

My plan is to contact my neurologist as I am now thinking I am also having a MS relapse and would find steroids to be helpful. Thanks to all who posted to this blog!!

fyi: I have been taking Gilenya for a few years, with great success. In 2009, I was on Neurontin and had such HORRIBLE side effects (double vision & acute dizziness) that I was bed-bound for a few months.

I am saddened to read that ppl have had shingles multiple times!! :'( I have been counting down the days to finish my "30 day sentence".... sigh!

Diane Duell said...

I was diagnosed with MS in 1999; I am 55 and rarely have a relapse so I usually feel blessed.

Two weeks ago, on the day after Memorial Day 2016, I was told my rash is shingles. I noticed what I thoought was "heat rash" the previous Tuesday (yes, a whole week had passed, due to the holiday weekend).

My PCP put me on Valtrex for 7 days and Hydrocodone for just 6 doses. I am experiencing lingering pain, while the rash is fading. I also have noticed an increase in pain from skin sensitivity.

My plan is to contact my neurologist as I am now thinking I am also having a MS relapse and would find steroids to be helpful. Thanks to all who posted to this blog!!

fyi: I have been taking Gilenya for a few years, with great success. In 2009, I was on Neurontin and had such HORRIBLE side effects (double vision & acute dizziness) that I was bed-bound for a few months.

I am saddened to read that ppl have had shingles multiple times!! :'( I have been counting down the days to finish my "30 day sentence".... sigh!

militarymom said...

Thanks for all your stories. My heart and prayers go out to you all! Strong people you are...we are!:) bless you....

militarymom said...

....my story..I was diagnosed in 1994...24 years old with MS. I am 46. Until age 42, I had very few relapes but life is much different now. I have slowly become worse and even trying to work part-time now has become a challenge and causes exacerbations whereas I am ill more than well. I love my remission times. I acquired my case of shingles this past year.

Now when I have relapses, I have 2 phases. This MS part and then what seems to be the more viral part. The feeling I had during shingles..low grade temp...horrible fatigue but no rash. I heard you can get them again but I am finding this odd to be this sick after my regular exacerbation of weakness, use of cane, cognitive and speech difficulty and fatigue. However, seems I was getting past MS symptoms and completely different viral feeling symptoms begin. I don't need a cane but can barely get up from fatigue. I have Windows...waves of thinking I am getting well but another wave hits in just a few hours
I take gabapentin and baclefin. I take steriods just long enough to break up cluster headache cycles. Vitamin D3, selenium drops, and magnesium spray. I have also started a Glutin free diet as there seems to be a link between MS and celiacs in many cases. It helps me feel better while in remission times but it doesn't take away illness. Anything helps if we can find it right? God bless you all! Thank you for all your posts

Unknown said...

Diagnosed with ms in 2003. Was on betaceron for almost 10 years. Been on Tecfidera since Dec 2014. Diagnosed with shingles Sat Dec 24, 2016.. merry Christmas..ugh. on meds right away...pain and an ty antibiotics. Calling my neurologists tomorrow.

Anonymous said...

I have had MS for 25yrs. I was taking betaferon for 20yrs. I was at my best then, working, babysitting etc. Then my body started to reject the injection so 18mths ago I was on Tecfidera, 6mths ago I was told that I wasn't getting any benefits from taking Tecfidera & I now have Secondary Progressive MS so apparently there's nothing else they can give me. I don't work anymore, I now need a wheelie walker or walking stick. My husband had to give up work to care for me. I do go out & socialise twice a week with friends but I can't do shopping or use a vacuum. Then 4 weeks ago I had a really bad headache all day. That night I noticed a couple of lumps in my scalp, thought I was bitten by a spider, no shingles Aye! 4 weeks later my bad MS side, shingles from my nose over my right eye up through my hair to the back of my head. The burning & stinging goes through my eye up & over my scalp. I was going to shave my head 2 weeks ago it was so bad! Just started taking neurotin, neurofen for the pain. As for the MS pain I only take panedole osteo, endep & stilnox to sleep. Now I just take 1 day at a time. Today I'm in bed.. They say it's caused by stress which could be right, just became a great grandparent @ the ripe age of 56. So no more stressing cos I'm over this pain. Going to have the immunisation for shingles in a couple of weeks. Hope this helps.

catatar said...

i have PPMS and A added dose of shingles. i also have right leg freeze,from ankle to butt, and A bad right hip,the shingles on my left back and left front leave me no where to lay or sit. I am A mess at the present time , due to pain MS hug in full force. what i use are cool damp cloths to shingles, warm epsom salt soaks for leg spasms and MS hugs. nights are worse. I use melatonin for sleep. I am in week 3 and the pain has not stopped, for some reason my arm pit on effected side feels like a major sunburn or brush burn feeling,but no marks there i can see. praying for all of you hope this helps a bit. Warriors all of us!

Unknown said...

I have had shingles 20 years ago and now having testing done for ms.? Lost my sence of smell or a change in smell and numbness in feet and fingers electric shocks and stabbing pains . Bemecube@gmail.com