I’ve been unfortunate to get shingles and I have been in agony with it. I didn’t get to see the doctor for three days before starting with the antibiotics. I’ve had 3 weeks of sleepless nights until recent. The pain has now subsided but I seem to be itching now at night across my stomach and back. I am 69 years old normally an active person playing golf and squash weekly but I can’t even take the dog a walk at the moment. My stomach is so numb it feels like a football and it’s so uncomfortable. I appear to be losing weight but that could be down to lack of appetite. I went for my 6 monthly CLL check up two weeks ago and they were unhappy with my bloods so have to go back in 3 months . (Hoping this could have something to do with having shingles at the time) I’ve been in remission for over 5 years.
I would be interested to know if anyone has suffered stomach ache and lack of appetite after having shingles and particularly how long it last for?
Thanks
John
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I see you have been with us for 9 years and this is your 2nd posting. I am guessing that you are in the UK (Nottingham hospital), but we don't know if you have taken the 2 Shingrix vaccine injections and/or if you are on daily prophylactic anti viral pills. Both of those are recommended to reduce the risk and severity of future outbreaks. And if you are taking daily prophylactics pills, you can increase the dose 5-10X until you reach your GP to get more pills.
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As soon as I realised I could have shingles I rang the CLL nurse at the hospital who said she would speak to my specialist. (Nottingham City Hospital) The next day I was told to see my GP. I couldn’t get an appointment until the next day and I was prescribed antibiotics. By that time half my stomach and back was ‘red roar’ .
I had heard of shingrix but didn’t realise I could have it. I will certainly enquire now.
I have not been prescribed any prophylactics pills so maybe I should ask my GP about them.
My blisters have healed well but I’m left with severe numbness, upset stomach, itching and stabbing pains.
I will read other postings to see if that is the normal symptoms.
Hi Headers. You’re not old enough to get Shingrix on the NHS in the UK, but that’s too late as far as your current episode is concerned anyway.
Your GP or consultant should be considering a high dose of Aciclovir while the phase is acute, followed by a prophylactic 400mg daily dose to keep it away.
CLL patients in UK are eligible for Shingrix even if under 70 - I’m 68 and waiting for mine.
It may need a consultant’s letter to confirm eligibility to the GP - my consultant has asked them to give me a course of 5 jabs against both pneumonia and shingles. GP has confirmed but the wheels are grinding slowly as always!
Yes you’re right. Thank you for the correction. I can’t have it myself as I’m on chemotherapy, and that would destroy the effect of the vaccination. And, as I say, it would be closing the barn door after the horse has bolted as far as Headers’ current episode is concerned. I’ve been advised to get my Zosters inoculation six months after I finish chemotherapy. So I’m on aciclovir until then.
Shingrix is indeed available over the age of 50 on the NHS to those aged 50 and over with a severely weakened immune system. It’s important to establish that your surgery has you classified in that category because I hadn’t been properly coded on the computer when I went for mine (even though I’d been invited to have it). I had to wait for the correct ‘code’ to be assigned before I could be given it 🙄. They said that having CLL didn’t automatically confer eligibility (though I don’t believe a word of that, I think it was a surgery oversight). Pays to check however. The computer rules! 😉
Go straight to A&E if you can't get a GP appointment for anything else in the future. You are a cll patient and you need to keep yourself well and not challenge your immune system anyone than it it.
Thanks, Newdawn, The NHS guideline is a bit ambiguous, stating that it applies to “some people with blood cancer (such as leukaemia or lymphoma)” . While this should apply to everyone with CLL, I should have mentioned that judgements sometimes need to be made about when it might be best to give someone with CLL a course of Shingrix, depending on where they are treatment wise.
The best time is before starting treatment, as early as possible after diagnosis, and, had Shingrix been available before I started my trial and had timing allowed, I’d have completed my vaccination course ahead of treatment.
However, when I started my trial of a BTK inhibitor, Shingrix still wasn’t available in Australia. As a part of the trial protocol, I was prescribed valacyclovir 500mg daily as a prophylactic and that provided alternative protection.
Had I been staying on long term BTK inhibitor treatment when Shingrix then became available in Australia, I’d have arranged vaccination, hoping that some protection is better than no protection.
Continuous prophylactic antiviral treatment after vaccination might still have been offered or not, depending on the trial protocol and specialist preference. Had I a history of shingles, I’d have been angling for it to continue in addition to vaccination, regardless of whether I was in treatment for my CLL or not.
As it turned out, Shingrix became available not long before my trial was stopping so, rather than get vaccinated immediately, I waited a few months after stopping treatment, in the hope that my immune system would improve enough to maximise my vaccination response, and then I got vaccinated. Now, as I’ve no history of Shingles, my CLL specialist has stopped the prophylactic.
While my situation was driven by vaccine availability, this approach might be something that those who are already taking a fixed duration therapy but who’ve not yet received Shingrix (or who are about to start CLL treatment too soon to complete a Shingrix course) might consider discussing with their specialist.
With Shingles it's important to get on antivirals urgently as it can have long term effects of not treated promptly .,usually need to take antivirals for a while after the symptoms have subsided. It's a good idea to get Shingrex shots ( recombinant vaccine). Don't get Zorovax as it's an attenuated live vaccine ( CLL = immune compromised)
So sorry to hear of your agony! Hope blood results are responding to the shingles But wow, still playing squash! That wore me out when I was in my 30s!
I had shingles and the after effects for 15 months. I took the antivirals but it was too late by 2 days. You need to take them within the first five days of seeing the rash. I thought my rash was a heat rash which I get every summer. As for your appetite issue. I lost 12 pounds in 8 weeks. My appetite did come back after about 12 weeks. The shingles got in the nerves in my back and did finally subside after the 15 months. I suffered little shingles rash pain just nerve pain. I also was wiped all the time and had to rest a lot which is totally not me. I did get better but it was a rough ride. I couldn’t get shingrix for six months after the outbreak but I got it practically the first day I could and the second dose as soon as it was prescribed. For anyone who reads this get shingrix you do not ever want shingles.
You are so right, I’ve made the effort this morning to go see my grandson play football. Doubled up most of the time with stomach pains but we won 3-0. Going to try to take it easy this afternoon. The first chance I get I’m having the shingrix jab👍
I wanted to write because most people I knew had rash area pain. While I suffered longer than most I did not suffer in the same way. It is nice to know it can get better because when you are in the throes of it it seems interminable. If my husband hadn't cooked for me during those first 12 weeks I would not have eaten.
My husband had the two shingrix vaccines in 2021. A year later he got shingles. He is one of the nightmares stories. He has been suffering with burning and stabbing pain for over 2 years now. He has tried all the remedies like medicines, injections, creams etc and no help at all. Your story gives us hope that it may someday stop. Did you see signs that let you know something was changing for the good? Anita
Your husband must be in the 10% where the shingrix is not effective. So sad. I had nerve pain along the spine particularly where the rash was. Little by little the nerve pain shortened and the fatigue lessened but it took 15 months. I was so tired I had to lie down every day in the afternoon. I remember really wondering if I would rather die at times. I was invited to a wedding of a very dear person and all year I feared I wouldn’t get there and finally 2 months before the wedding I started to feel like myself again. The improvement was soooo slow it you could think it wasn’t improving. I did keep diary notes on my ipad.
My heart goes out to you as I have seen firsthand how painful, debilitating and depressing shingles can be especially for some people. I’m so happy you have returned to normal. He too lost weight and was beyond fatigued., spent most days on the sofa watching tv. He has put the weight back on and has much more energy thank God! His shingles were from his bellybutton along his side to his spine. He has gone from pain of 10 on a scale of 1 to 10 over the past two years to a 5. It seemed like every time he would experience a couple of severely painful nights it would decrease in pain going forward. At one point it actually went to a four on a scale of 1 to 10 but then back to a 5 it seems now. I pray to God all the pain will go away. I so appreciate you input as this whole thing is such a mystery and you really can’t know how it is going to end. If you have any tips that you used to help with the pain please do share if you don’t mind. Maybe we are overlooking something.
Looks like you have been given the wrong prescription, that is what I am given for a bad reaction to insect bites. bennevisplace is correct with the Aciclovir dose. I went to A&E when I discovered what I had, but the walk in one, or agree 111 for speed.
Unlikely you have any silk shirts knocking around, but try to wear natural fibres like cotton, and loose clothing. Sadly not easy in this weather. Also don’t forget the good old fashioned calamine lotion.
You need to also check the time lapse before you can have Shingrex.
Sorry to be the voice of doom and gloom but I initially thought mine was another bad reaction to an insect bite until I described to a friend. I think mine was caused by stress, so please stay calm ☺️
When that's done you can reduce to a prophylactic dose 2 x 400 mg / day. If your GP has any sense they will give you a lifetime renewable scrip. By all means go for Shingrix too.
I'm not a doctor but I write from personal experience, which gave me far greater knowledge of shingles and its treatment than any of the medics involved in my case.
PS As it's a weekend and time is of the essence, you may need to call 111 to get your Aciclovir prescription and collect from an out of hours pharmacy.
I can relate to your predicament. Stupid me thought that since I had Chicken Pox as a child, I would be immune to Shingles. Well, at age 70, I came down with a nasty case of Shingles that creeped to the left side of my face and threatened my vision. My ophthalmologist loaded me up on antibiotics and steroids. It took weeks. I felt awful and had "moon face". Six months after my episode, I received the Shingles shot.
when I used to have shingles I found the best thing was a lotion called Aveeno Lotion. Liberally and constantly applied. Have you been around anyone who recently had the measles mumps rubella vaccine ? I've been told we shouldn't be around newly vaccinated people. And I also just heard that measles is making a major comeback because of low vaccination rates 😳😳😟. I only had one major outbreak but it was enough but I do remember the itching was a nightmare. Try the Aveeno if you can find it. Similar to calamine lotion but better.
If I may ask, are you constipated? I found when I started my new chemo pill that I was getting like that and I started taking electrolyte powder and it helped tremendously. I would def see your doctor tho. It's not a normal reaction whether to shingles or not. I'm sorry you're going through this. It must be very uncomfortable.
It’s been awful but I’m over the worst - still itching at night but I’m left with stitch like pains on my left side as well as being constipated. That’s now keeping me awake at night. Tried to ring the doctors this afternoon earliest appointment is December. However I have to ring again in the morning between 8 and 8:30 to see if I can get an appointment. It’s crazy.
Thanks for your reply I’ll try the Aveeno lotion 👍
Hi, I had shingles 3 years ago and unfortunately this has developed into PHN. It looks like I am one of the unlucky few where the pain does not go away. The pain is constant but the edge is taken off by a combination of pregabalin, duloxetine, codein and paracetomol.
I have my 6 monthly call with the consultant from the palliative care department tomorrow, I'll update if anything comes from this. Potential options are stronger opioids or maybe cannabis.
So sorry to hear that - it must be awful. I’m no longer in pain but my stomach and back are still numb. Managed to get an appointment at the doctors this morning and ended up with a prescription of laxative powders to help with my stomach cramps. Good luck tomorrow.
Antiviral medication will probably give more relief overall than antibiotics.
The numbness/itching could possibly be a neuropathy, where drugs like gabapentin or pregabalin might calm down any nerves causing the numbness/itch/pain.
I am in the US and have had shingles a number of times (following cases of meningitis) and 20 years prior to getting a CLL diagnosis. BUt in response to your specific question about feeling poorly while recovering from a shingles outbreak - YES - it is a very debilitating condition and wipes you out and YES, I suffered for months after each attack with overall poor feeling, loss of appetite, loss of weight. I was unable to get the original shingles vaccine as prior to Shingrix, it was a live vaccine and the doctors recommended against it, as I was a carrier of the herpes virus. Once Shingrix was available (synthetic formula), I was vaccinated and in spite of my complications with CLL, have not had any reoccurrence of shingles. Be patient recovering from this condition. It does take time. Feel better
Thanks for your response it’s now been 3 months and I’m still suffering. Mainly internal pains in my stomach and itching across my back. I have been back to the doctor about my stomach pains and I am now on amitriptyline which apparently I should have been taking from the start. Still no appetite and I have lost over 2 stones in weight. It makes me feel better knowing this is normal and hopefully I will fully recover. My goodness - you say you have suffered a number of times it must have been awful.
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