Shingles and fucidin: I have shingles since 24th... - CLL Support

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Shingles and fucidin

Paidraigin profile image
21 Replies

I have shingles since 24th Dec. Some are still weeping on my back despite being treated with Acicllovir. My GP has prescribed Fucidin today. When I applied it the shingles have become redder and stinging. I saw on one website that Fucidin is not recommended for shingles. Advice please.

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Paidraigin profile image
Paidraigin
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21 Replies
albie58 profile image
albie58

Give your doc a call and let them know what's going on. They are the best to advise you on what to do.

wroxham-gb profile image
wroxham-gb

Hi Paidraigin.

I note you are in theUK. Do you have a walk in centre near you that you could go to. Or failing that ring 111

And ask to speak to a doctor for advice. Failing that depending on how you feel perhaps a visit to a & E. I'm not medically trained but you might have a allergic reaction. If I were you I would get myself checked out and not leave it.

Hope you get onOK and please let us know how you get on.

Best wishes.

Sue

ygtgo profile image
ygtgo

What strength were the Aciclovir tablets that you were given ?

I had shingles just under two years ago ... the hospital gave me Aciclovir 200mg.

I went on to develope Post Herpetic Neuralgia in my foot which has robbed me of the little mobility that I had left. I cannot even stand onthe damn thing without a painful reaction.

Last summer I saw a 'rash' under the skin of my hand, just like the symptoms were in my foot ... It also felt like I had grabbed a hanful of stinging nettles.

I headed down to the health centre and the nurse agreed that she could see and feel the rash under the skin.

She gave me Aciclovir 800mg ... that seemed to do the trick.

I can't help but wonder that if the hospital had prescribed 800mg instead of 200mg, I might have been spared another painful, life changing condition ....

I really do have to go Oww!

SeymourB profile image
SeymourB in reply to ygtgo

ygtgo -

Oww!

I had never heard of shingles on foot or hand, but it can break out anywhere - but only on one side of the body, I'm told. Scientists still don't know why it breaks out on just 1 nerve.

Some sources may claim the Zoster cannot strike twice. I have my doubts. As a child, I had chicken pox twice - it's the same virus as shingles. I don't know if I had two variants of the virus, or just didn't build full immunity the first time.

Even today, clinics don't actually take a biopsy. But in our immunocompromised state, I suppose we're the ones who might get it twice. I wish someone would study this. It's is so debilitating! In the U.S., there are adverts on the TV all the time for the vaccine for baby-boomers like me (and most of us!).

ygtgo profile image
ygtgo in reply to SeymourB

The 'one side of the body ' theory is probably true in nearly all cases, but I would advise caution ...

I experienced bone / growing pain in my leg during the day, the next morning, I noticed small clusters of spots, and headed for the hospital.

There was a small cluster on my scalp, a small patch on my face, another small cluster on my back, but the main breakout was down my leg and along one side of my foot leading to the small toe.

It was in my foot that the shingles lasted the longest, although the spots were mostly under the skin.

So now I'm left with a foot that I have to wear soft, loose socks on ... it hates shoes, so I have to wear oversized footwear that I can put a couple of double lined shoe inserts into ... but it still doesn't make much difference, I can't really stand on the thing never mind walk.

Indoors is a little easier with oversized loose fitting slippers again with a couple of the inserts, due to the fact that I am on a surface of carpet and underlay, but I now shuffle rather than walk.

It's the weirdest thing ... I have no feeling in my foot so I cannot 'feel' what I'm standing on ... if I touch the skin in is super hyper sensitive, and when I stand on it I get an instant painful reaction.

So now it is numb and hypersensitive.

My worry now is that it has changed the way that I stand or sit, continuous bad posture is going to cause trouble in the future.

ygtgo

SeymourB profile image
SeymourB in reply to ygtgo

Well, there we are. You seem to have had a fairly massive breakout.

I think you would be an interesting subject for research into shingles - because of this breakout, and your interesting personality.

The nerve damage can cause just about any sensation or lack of it, I've read. I had the strangest sensations in my ear canal afterwards, but that's has subsided. I have vestibular trouble that flares, too.

I think once one gets numbness in feet or legs, one loses sense of position and posture. Then additional musculo-skeletal problems result. I know I've gotten back and leg trouble from simply sitting a lot more. In addition, the lack of exercise is leading to atrophy for me- and further injury when I overdo simple activity. So I'm working on an exercise plan. There are leg exercises you can do while sitting or reclining.

So it sounds like it would be worth it to pursue some sort of pain relief in the skin so as to increase your mobility. Maybe better circulation might help the numbness. A neurologist could probably have a field day with you!

Best of luck to you, and keep us posted,

=seymour=

ygtgo profile image
ygtgo in reply to SeymourB

I've had peripheral neuropathy mainly in my feet, when it's bad, sometimes in my hands and face since 2005,

Maybe this is the reason that the Post Herpetic Neuralgia set up home in my foot, who knows.

What caused the peripheral neuropathy ? ... I've no idea ...

... but I'd like to point out an issue that 'sparkler' brought to our attention on Fluoroquinolones - broad-spectrum antibiotics.

I make sure that I am NEVER given these antibiotics ... I was given a couple of these in the perion before my peripheral neuropathy began.

ygtgo

SeymourB profile image
SeymourB in reply to ygtgo

For peripheral neuropathy in feet, usually the doctor tests for diabetes first thing. After that, it's hard to do tests to confirm a cause, I think. I am by no means a doctor. So don't give up asking. Sometimes, just the right doctor has an insight that unlocks the mystery. A middle aged neighbor had growing leg weakness and neuropathy for a few years, He finally found the right doctor at a university clinic. They found out he had an autoimmune condition that has been treated well with IVIg.

If it's both sides of the body, I think it's not related to the Zoster. But if you had pustules on both sides, as I said, you would be a great subject for research - if the pustules are still there. I'm not sure how well they can detect the virus after that, though. It goes dormant in the cells.

The thing with Zoster is that peripheral nerve cells can be incredibly long - from the spine to your toe, or from neck to spots on your face - with branches. But it's all 1 cell. The virus somehow hangs out quietly in the nucleus, then something makes it active to send out molecules that you feel along the branches. Peripheral nerve cells don't regenerate like skin cells do, so you can't just destroy them. It's hard to get antiviral drugs into the nucleus, so you have to catch the virus at the first break out.

The whole Post Herpetic Neuralgia thing is not well understood yet. All I can say is that stress makes it worse - lack of sleep, too much exercise (after not enough exercise), and emotional outbursts all lead to it for me. I do take an anti-depressant. I'm the weepy, excitable type. My aunt died last year, and the emotion led to headache along the affected trigeminal nerve, and extra-blurred vision in my affected cornea. I can measure my stress by reading an eye chart, I think!

I was getting a hot sensation in my hands and feet when I played an exciting video game (Starcraft2). I think the stress hormones changed my circulation to cause a flushing reaction. I could also detect changes in pulse rate due to the excitement. I think maybe sometime I'll try to see if an infrared thermometer sees a difference in skin temperature. I don't think it's related to Zoster or CLL. More likely, related to general inactivity and then sudden excitement.

So now, I play Rocksmith - learning how to play bass guitar. Same sense of achievement, but less stress. Gad, I have so much more respect for Paul McCartney and John Entwistle now!

I miss meeting up with friends online to play Starcraft, though. I still do a match now and again. We have a gaming clan for older gamers - some as old as their 70s. Mostly 50ish. I'll be 62 in a few weeks.

Hope this helps,

=seymour=

melania profile image
melania in reply to SeymourB

Not the vaccine with CLL!!

Cllcanada profile image
CllcanadaTop Poster CURE Hero

I don't need a repeat of zoster... it has effected me far more than CLL frankly.

So I'm on 800mg prophylactically, during Idelalisib/Rituxan treatment...

I would get a second opinion on Fucidin....

Is it Fucidin H?

~chris

Since I started Acalabrutinib (ACP-196) two years ago, I have been taking 500mg/daily.

DobiBears profile image
DobiBears

Hi. Sorry for your struggle with shingles. It's very uncomfortable and painful. I was continually getting it. I would get a flare up, heal, and then a week or two get it back again. My oncologist suggested 500 mg Valacyclovir every day. I do not get shingles as long as I'm taking it and only have to take the one dose per day. Way less stomach upset than the Acyclovir. Good luck and hope you are able to get it cleared up. Wish you the best, Lori

SeymourB profile image
SeymourB

So sorry for your pain, Paidraigin.

Others please heed! If you get pimples on your forehead or chest on one side of the head or chest only, especially after unexplained pain or burning in the area, see a doctor ASAP. The sooner you get an antiviral after signs of pustules, the better. Shingles is a curse that keeps on cursing.

Valacyclovir (Valtrex) is reportedly better, than acyclovir, but more expensive. It's probably too late to change, though.

emedicine.medscape.com/arti...

"Usually, the earlier antiviral medications are started, the more effective they are in shortening the duration of zoster and in preventing or decreasing the severity of PHN. Ideally, therapy should be initiated within 72 hours of symptom onset."

...

"Some studies suggested that valacyclovir and famciclovir may be superior to acyclovir in resolving pain and accelerating cutaneous healing. In addition, both agents have greater bioavailability than acyclovir and thus require less frequent dosing."

I was given Valacyclovir within 72 hours of pustule formation, and I'm sure it helped. Even so, the virus entered my cornea, and I've permanently lost some vision in that eye (20:400, corrected). I still have PHN (Post-Herpetic Neuralgia) 10 years later - especially during times of stress. My CLL diagnosis came 4 years after my shingles.

I stayed on acylcovir for 2 years. It was so inexpensive - cheaper than aspirin in the U.S., and the side effects so minimal, it didn't seem to hurt. I can't tell it did much good, though. The valacylovir probably saved me much more pain and damage.

For me, the pain started at the top of my head - like a dull, painful pressure, on a Saturday night. By Sunday, it was almost blinding pain. I went to the clinic first thing in the morning on the Monday, and got the prescription for valacyclovir.

Sadly, 2 months later, even after the pustules were gone (though still red), I passed Zoster on to a friend's toddler, even though I never came close to her. She came down with a full case of chicken pox. With open pustules, one should simply avoid contact with families that have vaccinated children.

bkoffman profile image
bkoffmanCLL CURE Hero

Fucidin would be for a secondary bacterial infection, not the primary herpes zoster. It has no role in treating shingles itself.

Paidraigin profile image
Paidraigin in reply to bkoffman

Yes. I was should have explained that following diagnosis I was admitted to hospital on 27th Dec and administered aciclovir intravenously. I was then given 800 ml aciclovir to take at home orally for a week and 400 ml to take ongoing. I had a hospital appointment for a biopsy. I rang and told them about the shingles. They asked me to see my GP to confirm I am no longer contagious. While most of the rash has dried up there is a small area on my back still weeping. My dr prescribed fucidin in case I had bacterial infection. I have used fucidin before and it was fine, but when I put it on the shingles they became very red and stinging. I read on one site that it was not appropriate to use fucidin on shingles. I wondered if this is correct?

bkoffman profile image
bkoffmanCLL CURE Hero in reply to Paidraigin

Fucidin in not used in the USA so it is hard for me to advise. Generally if the lesions get red and painful after use, it is clearly not a good choice for you. Fortunately there are other good options such as mupirocin or nothing is there is no secondary bacterial infection. Stay strong Brian

casanova profile image
casanova

I cannot add much to what others have written but would emphasis you seek further medical advice as soon as possible. The risk of post herpetic neuralgia is real and can cause long term misery. Get further medical help and perhaps speak with the specialist nurse or other member of your CLL team. Good luck and hope you feel better soon. Maureen

Paidraigin profile image
Paidraigin

Thank you all for your kind replies. I was should have explained that following diagnosis I was admitted to hospital on 27th Dec and administered aciclovir intravenously. I was then given 800 ml aciclovir to take at home orally for a week and 400 ml to take ongoing. I had a hospital appointment for a biopsy last weeI rang and told them about the shingles. They asked me to see my GP to confirm I am no longer contagious. While most of the rash has dried up there is a small area on my back still weeping. My dr prescribed fucidin in case I had bacterial infection. I have used fucidin before and it was fine, but when I put it on the shingles they became very red and stinging. I read on one site that it was not appropriate to use fucidin on shingles. I wondered if this is correct?

hubbell profile image
hubbell

The best cure I found was going into the ocean, if you are lucky enough to live near one.

Hubbell

Seven6 profile image
Seven6

Hi

I had shingles in the summer. My GP would not treat me, saying initially I had no blistering and then they were the wrong blisters. I had ophthalmic shingles which began to make my left eye swell and I was referred to Eye Casualty at my local hospital. Here I got well treated and was given Acyclovir 800 mg taken five times a day and antibiotics, these were prescribed for a week and then I had a follow up appointment, I did have a further week of Acyclovir. It was a relief how quickly the treatment stopped the spread and development of more blisters. The blisters I I had already developed seemed to take their own time in healing. I had neuralgic pain until the blisters healed, which took sometime, now I am fine. I do have scarring where the initial blisters formed.

I spoke to the Macmillan Nurse about the anomaly of advice in their booklet and my GP. She said treatment was a clinical decision but she felt I should let my Haematologist know I had shingles. He asked me to go in and see him, he was checking the blisters were healing. He also explained to me how his department would treat shingles, so I am now more informed. He suggested he would treat for two weeks with Acyclovir, which as it turned out I had received.

I would suggest you speak with your haematologist for advice. Mine seemed very knowledgeable about shingles and leukaemia.

Shingles is painful and miserable. All the best.

Seven6

Seven6 profile image
Seven6

Hi again,

I have just read further down from your post and see you are being treated by the hospital who administered intravenous Acyclovir, this was also explained to me by my haematologist. Maybe advice on the non-healing needs to be pursued?

It is difficult to have the knowledge to know when to seek advice and when to soldier on, but I guess this is what the professionals are there for.

All the best again

Seven6

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