Thursday, March 10, 2011

Lupus and Shingles (Herpes Zoster)

I have been very busy with both work and family.  And while I diligently and faithfully take my medication daily, little did I know I will be "gunned down" and be confined to home suddenly by this disease - shingles - in the midst of a busy working schedule!  It seems that people with lupus are prone to this disease.  Shingles or herpes zoster is caused by the same virus that causes chicken pox.  When you have chicken pox especially when you are young, apparently the virus does not completely leave your body when you recovered. Some virus hide in your nerves and become dormant like a volcano. When your immune system is weaken, as in the case of lupus patient who is taking steriods and immunosuppressant drugs for a long time and probably due to stress too, the virus will be awaken like a mummy and create havoc to your life and give your pains that can be killing, if not unbearable.

It all started with hypersensitive skin at part of my left hand. Then this hypersensitiveness slowly spread to my whole left hand and arm.  And I also experienced numbness, tingling feelings, pin and needles and ache on my my hand and arm.  As for my left shoulder, I have this stabbing pain and sometime piercing pain from the back of the shoulder to my heart area which can be unbearable.  I ignored the hypersensitiveness of skin initially as I thought it will come and go like those I experienced before.  But when it didn't and spread, I went to see my doc.  He initially thought that it is nerve pain caused by nerve inflammation - probably due to my lupus fare.  He increased my prednisolone to 15mg from 6.5mg and gave me a new medicine, Lyrica for my nerve pain.  I stayed home the next day and noticed that rashes appearing on my left armpit and hands.  I called the doc thinking it might be an allergic reaction to the new medicine I took.  The doc ordered me to see him immediately.  Just a look at the rashes, he concluded that I have shingles.  He prescribed anti-viral drug, valaciclovi and asked me to go back to same level of prednisolone.

I have innocently thought that shingles is like chicken pox.  I was so wrong.  The pain both on the skin and the nerve are unbearable at times.  Sometime when my spirit was weak and the pain was killing (even when I took the painkillers), I secretly wish I was dead so that I need not suffer the pains.  I told my doc about the ineffectiveness of the painkillers (panadeine) and when he changed to another medicine - ultracet - it was effective in reducing the pain but I have adverse reaction to it - dizziness and nausea which was so bad that I was reduced to staying in the bed for almost 2 days.   I guess there is no such thing as having the cake and eat it too. 

I am still on medical leave recovering from shingles.  Typically, it takes about 2 weeks to recover from it.  The pains are still there but the rashes are drying out. I have stopped taking ultracet and relying solely on Lyrica to cope with the pain although it is not very effective.  When I told my doc that shingles seems to be prone among the lupus patients, he said with a matter of fact that it is a "balancing act'.  While steriods and immunosuppressant drugs are used to control lupus flare, it inevitably that they also weaken your immunity and make you suspectible to disease like shingles. It is unfortuntable but it is definitely something lupus patients must deal with and somewhat come to expect it.  Personally, I am quite depressed over it, having to deal with 1 operation and 2 major illness within a short period of 1 year.  Not only my family suffered, my career and work is also badly affected by my "roller coaster" health.

Nothing could change the fact that I have lupus and my life will be more unpredictable with it.  But no matter what happen, I just have to take one day at a time, and live life to the fullest as I could since I do not know what will happen to me next.    

25 comments:

  1. Oh dear ....
    Oh dear ....
    It hurts ....
    Takes a long time to heal especially with lupus!
    Please take good care of yourself.

    I only had my chicken pox last year, therefore, door to Shingles is officially open! Yikes!

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  2. Hey, if you have the time, pop by my blog!

    http://sillylupie.blogspot.com/

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  3. Hey lupie,

    You take care too! Don't be too stressed up and shingles will not come. Btw, nice blog! Saw the news on the new drug for lupis too.

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  4. Very reassuring to read your symptoms, so like mine with shingles. Hope by now you have recovered, I am only into the second week and as you say the pain is "killing". My right shoulder is screaming with pain and my usual high dose of codeine is not really working. Just a waiting game I guess for the symptoms to subside. For me it was possibly triggered by leading a busy life with lupus and being on steroid medication - so hard to get the balance between looking after self with lupus and having a life!

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  5. Has anyone gotten the shingles vaccine... My doctors said I could get the vaccine. I am going on friday March 23, 2012

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  6. Hello, I hope you do get better soon. I watched my mother go thru shingles quite a few times with her lupus, the pain for her was unbearable. I wish I could have taken away that pain for her. She passed 10 yrs ago from lupus.
    Please take care & fight this disease.
    Your in my prayers.

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  7. I am sorry for you loss Anonymous! I woke up this morning with Shingles! Since I have Lupus, Fibromyalgia and Mixed Connective Tissue Disease, I didn't have sense enough to know I was about to break out! I am g
    lad you shared your story, it helps the rest of us to know what is possible!

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  8. Hi I also have lupus and had shingles in my eye which happen back in August 2011 and my eye is still being affected from the shingles. Has anyone had shingles of the eye or know someone who has had it? I have been suffering for almost 10 months and the swelling and inflamation in my eye won't go away I have been on prednisolone drops and it doesn't seem to help. Any suggestions??

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  9. Hi everyone, i have lupus also systemic as well as discoid RA, fibromyalgia. My hands have begun to look deformed which it trully bothers me the pain has been bad as of late. I've had chicken pops as a child but not shingles and I do hope I don't have to deal with it the pain I go through now is enough. in the early 90s with the onset of lupus i had red swollen skin all over my body they started off like a mosquito bite then spread heat radianted from each one burnt my skin. I'm going to look on line and see if I can learn more about that. I've been having problems with itching and nothing seems to be helping it. I am using itch cream and a prescription. Thanks for sharing i'm the only one in my family with these issues. Hope to chat soon.

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  10. Hi my name is Natalie I have had Lupus for 9yrs, fibro for 10, RP and IBS, . I have a question, I'm in the PFA at my youngest childs school. The president just asked that we have a meeting to start off the school year. In her email she stated she has shingles, I just got over a flare the lasted a few months. I have had the chicken pox as small child. Am I ok to go over there?

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  11. For anyone suffering with the debilitating pain of shingles and/or post-herpetic neuralgia, I'd like to suggest finding a good acupuncturist who specializes in pain management. I've been dealing for several weeks with shingles affecting one side of my face, especially my ear. It took a while to diagnose, because the first symptoms were more like an ear infection or severe headache than anything else. Once the skin blisters developed, I was thankful, because they led to an accurate diagnosis, if not necessarily the best treatment.

    I went to specialists to protect my vision and hearing, in addition to seeing a general practitioner. At one point, I was taking 12 different medications, including valtrex, but the pain has been excruciating, and I was experiencing side effects from the meds. I did manage to complete the 7-day course of anti-viral medication, which is supposed to send the virus back into hiding.

    The general public mostly worries about contagion, so once the external signs diminish, they couldn't care less how you feel inside -- they want you back at work. The western-trained doctors gave me some literature about how PHN can last for months or even years, and offered me a choice between two toxic medicines: a narcotic or one of those nerve-pain meds that carries the warning, "increases thoughts of suicide". Gee, let's see -- should I risk drug addiction or death in service of the job that stressed me out and gave me this illness in the first place?

    Fortunately, I found an excellent acupuncturist in my area. After one treatment, the pain was reduced to the point where I can actually think. Hopefully I'll be able to get in a few more treatments before I have to go back to work, because nobody should have to work when they feel like somebody's stabbing them in the head with an icepick. My insurance doesn't cover acupuncture, although some plans do, but to me, it's worth every penny.

    From what I've read, each case of shingles is different, but it's nothing to play around with. The only purpose of pain is to alert you that something is wrong in your body. Once you've dealt with the "wrongness", you have no need for the pain. Acupuncture has worked for me on joint pain in the past, and I have every reason to believe that it will end the pain of shingles/PHN for me soon.

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  12. Just been diagnosed with shingles and only just managing the pain, hope it does not continue for too long. What I am across about is that the NHS have discussed giving shingles vaccine to all over 50 years of age. Had I know the vaccine was available I would willing have paid for it even - life for 50+ is more stressful now than ever before, balancing your own life whilst looking after elderly parents and grandchildren. What happened to preventative medicine - about time GPs were a bit more proactive and suggested how to avoid health problems, not attempt to fix them after the event.

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  13. I just read an article said people within you in Compromise diseases should not get the shingles vaccine because it has some live virus in it. has anyone heard of this? I was thinking of getting the vaccine but now I don't know.

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  14. If you are on steroids, you should avoid shingles vaccine.

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  15. Hi Everyone,
    Me too I was diagnosed with Systemic lupus a year and a half ago.I was on oral prednisolone for nearly a year then I started Plaquenil.I got herpes zoster 3 weeks ago while being on Plaquenil alone for nearly 7 months.I received acyclovir for 2 weeks,now the lesions over my abdomen are healing but pain is still there and I have severe like hell itching sensation over the lesions but of course I can't scratch them.Is there any advice?

    Thank-you

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    1. I was always told never take any live vaccines with lupus.

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  16. Hello!I have had lupus [SLE] for 19 yrs.Had open heart in Dec 2012,having surgery in May again,and still have a AAA to deal with.It,s a good size.NOW,I have my firt outbreak of shingles.Pain is unbearable esp.with a flare up that started 2 hrs. after I left Drs. office.I know the give up and I want to die exp. App.I died on the table, and theybrought me back to suffer more.I am taking meds now for shingles,day 2,does this stuff work? I have been of wk.since Dec.Pajn is unbearable,Ijust want to give up.I think often I would love to go in my sleep.Life is gone as Iknew it,the least activity wears me out.I wish everyone good luck and hope my journey ends soon.Thanks for letting me vent,I know i'm not alone with these deseases.

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    1. Hi, I hope you are feeling better now. Don't give up! There will be rainbow and sunshine after the rain. Just need to look at the positives. Distract yourself from pain by doing something you are interested or love. I know it is difficult. But you need to try. Look at me now, I am still happily living my life despite the setbacks in life. Pain will go away eventually. Don't be beaten by it!

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  17. I was glad to read your story. I was diagnosed with lupus about 20 years ago, and, until recently, I've had few problems. But then, like you, I was totally gunned down when shingles broke out in my ear, then spread to my face, resulting in a loss of hearing (which is making a comeback) and paralysis of half of my face. (This is known as Ramsey Hunt Syndrome. This began about six weeks ago, and I feel that I am improving, but I do miss my smile. I am furious that it has been shown that people with lupus are much more likely to get shingles than the general population, but doctor has ever mentioned this! Doesn't it seem that people who are i a high risk category should be warned and an immunization given?

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  18. Thanks for all the posts. Sometimes I feel like I'm the only one suffering. It's a shame to hear there are so many others, but the pointers everyone shares are helpful. I am currently going through shingles and will most likely be hospitalized because it is spreading. It is so painful. I am 43, married and with 3 kids so I am trying to be strong. I was recently hospitalized for bad kidney function. I somewhat got that calmed down, then I developed a blood clot and I am now on coumadin and had to cancel my family vacation to Disney World. It was heartbreaking to tell my children. I am also on Cellcept and Prednisone. Now I got a severe case of this shingles that is spreading all over my body coming out multiple nerves and headed to the ER for hospitalization tomorrow. So I am seeing a rhematologist, a nephrologist (kidneys), a vascular doctor and family doctor (blood clot), now a dermatologist (for shingles), and a cardiologist for a leaky heart valve that on the last visit was told would need to be replaced in 5 years. ��

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  19. I too am battling shingles. I have sle, 34years. There are many good times, however when the problems arise it is difficult. I don't believe anyone but another lupus patient can understand how we feel. We usually look pretty healthy therefore giving the impression that everything is fine. To those who are dealing with a shingles outbreak and lupus, sit tight and know that this too shall pass.

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  20. Thank you for your post, I don't feel so crazy. Living with Lupius and shingles is rough.

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  22. I've had SLE for approximately 4 years and shingles for 2. Its excruciating. I have only been diagnosed but never treated because I have no health insurance. Trust me it could always be worse so cherish the time you do have. I don't feel as though I have much time left considering I'm now getting shingles blister outbreaks monthly and am starting to get sharp pains in my heart/chest.

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