Hi, first time on here and hopefully might find some advice, if not it might prompt some to ensure they get the appropriate shingles vaccine.
I was diagnosed with CLL in 2014 with my first round treatment in 2017. This went reasonably well and I then went 4 years before it was decided that I would need the next round of treatment (Venetoclax and Rituximab). This was October 2021.
Prior to the treatment we took a few days break at the coast but had to leave early because I was in severe pain and ended up in A+E. After lots of tests it became obvious that the pain had been caused by a bout of shingles. I was kept in hospital for a week and then discharged with a prescription of codeine and paracetomol for the pain and aciclovir for the shingles.
Whilst the pain was not as severe as before I went into hospital it was still bad. At my next meeting with my haematology consultant it was decided to delay my CLL treatment until the shingles had cleared up. The virus was still present so I was prescribed more aciclovir as well as pregabalin and lidocaine patches for the pain.
The aciclivor did clear the virus but the pain remained. It was decided then to commence the CLL treatment last summer. This has gone well with little in the way of side effects.
However the pain has continued and is now classed as Post-Herpetic Neuralgia. I am now seeing a consultant at the pain management centre, she has prescribed me Amitriptyline. This doesn't seem to be having much impact on the pain, I take this last thing at night and in the morning it feels like I have a hangover (without the benefit of the drink!). She is going to try another drug instead.
I was 60 last year and I have now almost accepted that I will have the pain for the rest of my life. This is a depressing thought and much worse than any other consequences of the CCL.
From never taking any tablets to now taking 26 a day !
I would be interested to know if anybody has had a similar experience. I would urge everybody to ask for the shingles vaccine if you have not already had it.
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OWLS26
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I am so sorry to hear of your pain from Shingles. My dad suffered from that in his last year here on earth and at the time, I was not fully aware of how painful it was for him. I hope you find some relief from your pain.
I am sorry to hear that you have had so much pain OWLS26 😞. I have known a couple of people personally who get shingles. They have always said it was extremely painful where the rash was present. I’ve not heard of any of them having continued pain after it clears. Where is the pain, if I’m not being too personal by asking? Had you gotten the vaccine prior? I’m just curious- I’m getting my 2nd shingles shot on the 20th. I’m a little nervous as I keep reading the response to that shot is usually worse than the first. Obviously, I will get it regardless, because actual shingles sounds unbearable to me.
Get your 2nd shingles shot. You'd need an almighty reaction to come to within a fraction of a percent of what post herpetic pain can be like. I've been putting up with it since July last year.
thanks to this page and your comments I made sure I got my second shot I had had a pretty decent reaction to the needle but after reading comments decided to make sure I got the second shot thanks.
Thank you for the kind replies. The pain is in the left side of my body, between the stomach area and chest area. I hadn't had the vaccine before, I was actually told not to get the vaccine because it is a live vaccine. I was not aware that there was an alternative vaccine that I could have had, apparently it is not available on the NHS. In hindsight I would have paid to have it. Perhaps I have just been unlucky but I would certainly advice that you have the jab.
I think this depends upon your GP as I have known younger patients who have obtained Shingrex.
Like almost everything with CLL the GP is often not fully up to date, and thus the patient really needs to be up to date and just (badger ) talk knowledgeably to the GP.
Surely this is why we are all here on HealthUnlocked.?
Dick
I should perhaps have added that while the patient's GP might not wish to provide shingrex the consultant haematologist would certainly recommend, and could also prescribe the shingrex. The consultant here always has priority in these decisions.
Thanks for the additional helpful information. It's always worth pressing the case. We have similar issues here in Australia with vaccinations although Shingrix isn't available through the National Immunisation Program at all here yet. You can get it if you want it, but it's expensive. I recently had to self-advocate to get a five-year Pneumococcal booster and then work just as hard to get it funded through the National Immunisation Program. The problem was the computer system that wouldn't allow my GP practice to claim for the vaccine's cost unless they entered exactly the right information.
You wrote " The problem was the computer system that wouldn't allow my GP practice to claim for the vaccine's cost unless they entered exactly the right information."
Here also in the UK the common comment is:-
Who runs the national health service.??
The office workers, computer programmers ........
OR
The doctors, who surely know what is best for the patient.????
Don’t beat yourself up about that. My husband had the two shingrex shots 1 year before getting shingles. When you are immunocompromised there is an unfortunate chance that it won’t help at all. He got shingles last October and is suffering from host herpatic neuralgia 10 months later. My prayers are with you. Nothing to date has helped his pain at all. I am hopeful it will eventually subside.
Thanks so much for taking the time to share your difficult experience to help others.
For the benefit of others reading this post, I'll add that there is some additional information about shingles vaccines in our pinned post about vaccinations:
Been there from back in July last year, still doing that. My sciatic nerve was affected, so I had the rash from the top of my inner thigh to the sole of my foot. I could barely walk for two months, couldn't drive for 6 months and walking still tires me, because I have poor sensation from my knee down. Amitriptyline barely helped, ditto the lidocaine patches. Like you, I felt hung over - lasted to at least mid morning, ruining my morning productivity. The only medications that might work (not guaranteed) are the nerve pain blocking drugs gabapentin and pregabalin, with pregabalin seemingly the better option for CLL. Even if they do work, the maximum dose permissible can be an issue with ageing, because of reduced kidney clearance (eGFR) as we age. Upper limit of pregabalin is typically 600mg per day, depending on age. These drugs can also suppress your platelet and neutrophil counts - happened to me, so I went from 3 monthly blood tests to blood tests every two weeks.
If you are prescribed gabapentin rather than pregabalin (as I was by my GP) and find that it doesn't help much, then be aware that there is no agreed medical guidance to make the transition to pregabalin. Both drug manufacturers recommend tapering off one before increasing the dose of the other. Have they ever experienced shingles without effective pain medication? I opted to taper down gabapentin while concurrently increasing my pregabalin dose, even though there is a seizure risk. journal.nzma.org.nz/journal...
If pregabalin doesn't fully manage the pain, then opiods are often recommended, but paracetamol, particularly the higher dose panadol osteo shouldn't be overlooked. Thanks to the opiod overdose epidemic msn.com/en-au/news/other/th... and the CDC's understandable over-reaction to long term use of these powerful drugs, it's extremely difficult to get long term access to opiods that can at least take the edge off the pain so that you can sleep. (Ironically, one of the side effects of gabapentin, pregabalin and opiods is that you become drowsy and can fall asleep during the day, despite trying to stay awake. Apologies to the many members who read strange endings to my replies over the last 8 months.)
There's a whole lot of unpleasant size effects from opiods and gabapentin and pregabalin, but that's nothing compared to the pain of living with post-herpetic neuralgia, or worse, post herpetic neuropathy, from permanently damaged nerves. Keep in mind that it's very much a "try it and see" approach with shingles/post herpetic pain management, but I would suggest that pregabalin should always be one of the included treatments, then trying other drugs, etc until you hopefully find something that makes the pain bearable. Oxycodone didn't touch the pain for me, but codeine helped somewhat and tapentadol somewhat more. I'm off these now, but as I mentioned earlier, using these drugs for chronic pain management is considered highly undesirable - doctors don't consider them appropriate for more than two weeks, but what do you do when you've majorly lost your quality of life?
I was doubtful Shingrix, the recommended shingles vaccine would help in my case - being post treatment and having zero to very low levels of B lymphocytes. I wanted off the antiviral, because I thought it was causing some symptoms, which I now consider must have been the lingering effects of my treatment drugs. Perhaps Shingrix would have lessened the severity of the shingles/post herpetic neuralgia. It's an expensive vaccine, but still less expensive than multiple doctor visits, particularly to a pain specialist (recommended), even without considering the pain potentially avoided. (Avoid the older, better established Zostavax vaccine, often freely available; it's a live vaccine.) Meanwhile, stay on an antiviral valaciclovir or aciclovir if you have a low lymphocyte count - discuss with your specialist.
I got caught out by a stealth shingles attack, which began as low back pain on my left, moved to my right lower back, then just within two weeks I had the classic rash. Because it had been developing for a while, even starting the antiviral within 24 hours (I had the valaciclovir in the fridge ready for my first shingles outbreak) didn't prevent the nerve pain and subsequent development of post herpetic neuralgia. My recovery has stalled from my knee down. Thankfully my nerve sensation from my lower middle back and down to my knee has returned. Sometimes I can feel things with my toes which gives me hope that this pain won't be forever and I can ditch the pregabalin and paracetamol.
I agree, everyone should get the Shingrix vaccine; I've been told by a few women who have gone through Shingles/Post herpetic neuralgia, that the pain is worse than giving childbirth - not to mention that it can be never ending.
I agree. I have the post hepatic neuralgia since 2019. It started when I got both Shingles vaccines and had continued. I had 8 separate recurrent episodes of shingles while on daily prophylactic valcyclovir. When I am about to have an outbreak, I get about a week of low grade fever, migraines daily, lack of appetite and my hair follicles on the right side of my head and the right side of my face burns. Then the outbreak recurs in the same area of my back near my right scapula. With a week of Valcyclovir 3 times a day, the shingles starts to resolve and the vesicles drain and scab over.
The outbreaks seem to be tied to lack of restful sleep for a few nights, or any stress or fighting a concurrent infection such as the common cold, or if I get any immunizations.
I have no answers and remain on daily Valcyclovir and gabapentin for the nerves trying to live a low stress lifestyle.
I also had severe pain for 2 years after a very bad bout of shingles. 3 years on and it has subsided a lot- Only reappears when I am very tired and too hot. There is light at the end of the tunnel and I hope the same for you.
Which bit of you body is the shingles affecting? When I have had it it has always been on my face - lower park of right cheek to across to right nostril and right ear. VERY painful. Somebody told me that they had been told to wrap the area in clingfilm, to exclude air. Clearly I wasn't wrapping my face in clingfilm; But I had in the cupboard some hydrocolloid dressings. They fairly thick, and see through, and they also stick to skin, absorb moisture from whatever they are covering. They are expensive - but they were worth it for me. Boots sell them, and probably other pharmacies, and they are on Amazon as well.
I know what you are experiencing having had shingles in 2010 7 months after stem cell transplant for CLL. This left me with post - herpetic neuralgia on my back around shoulder blade area which continues to this day.
I have done the rounds of pain management consultants at St James Leeds, Christie , Manchester, and Liverpool. I have been through amitriptyline ( agree Zombie effect not acceptable) , gabapentin, pregabalin even tried Qutenza ( Capsaicin) patches - too painful for short term benefit. Was been told if not resolved within 3 years you are stuck with it.
I am now on Lacosamide (an anti-epilepsy drug) with the aim of dampening down the electrical pain messages from the affected area. It seems to have some benefit but is no way a cure. I also get relief for using a topical agent called Biofreeze available in spray and gel forms which helps to relieve episodes of severe pain. As It is on my back I have to adjust my position carefully when sitting or in bed to prevent rubbing the area. Also wearing a thin vest at all times prevents rubbing and triggering onset of pain.
Would be interested to hear of any other possible treatments
I had shingles years ago, way before CLL, and it was horrific pain. The only thing that helped with the post herpetic neuralgia going up my arm was acupuncture. I went to a very experienced knowledgeable acupuncturist and it went away after only a few sessions.
Hi - you have had it tough!! Nerve pain medicine is tough - as you have experienced, it is not very affective and the health professionals struggle to eleveviat the severe pain your are experiencing. It seems that they just keep loading the dose because they are unsure how to treat if effectively. I also have multiple sclerosis - so pain management has been a big part of life at times. Try and find the best pain management person you can. Try acupuncture-but speak with cll specialist first and oxygen therapy. My shingles pain is still in my neck, ear and side of my head 3 years on but it is not severe anymore and is more an burning sensation. So as time goes on I hope your pain reduces and you find a good practitioner. Take carexx
I am in the USA and my oncologist at Emory in Atlanta just yesterday sent an order for me to get my second round of Shingrix shots, the shingles vaccine. I am 77 years old and had the first two shots when I was 65. This is not usually done or recommended by the CDC, thus the reason I had to have her order. I read that the vaccine usually lasts about ten years, so I am reasoning that this is why she wants me to have Shingrix again. I have an appointment to have the first of the two shots on Monday morning. After reading this thread I'm very happy to be getting he vaccine again. These problems post shingles sound horrific! All the best to you who suffer.
Thank you for all, your comments, it's good to know I'm not alone. Lots of other potential options mentioned on here, I'll discuss them with my pain management specialist. Encouraging that it has eased for some people, still only had it just over a year so hopefully there is a chance it will go. Might not suggest to the wife that it's worse than childbirth !
My younger child has severe nerve pain due to a spinal syrinx (not related to shingles). They are taking pregabalin at the max dose with little relief. The pain clinic just prescribed a buprenorphine patch that is to be changed every 7 days. It's the first thing that has muted the pain. It is an opioid, but one with fewer issues. Just for you information.
I've been living with post-herpetic neuralgia since I had a bad bout of shingles 11 months ago. Like most people who've recounted their experiences here, I've been through most of the different ways of managing the pain - antivirals, gabapentin, pregabalin, amitriptyline, patches, etc. The pain on half of my face is barely manageable after 11 months. My GP precripbed Shingrix for me even though I'm not yet 70, so if you're in the UK you may be able to get the vaccine on the HNS. Wishing you all the best.
I had shingles in 2006 over the entire left side of the trunk of my body, front and back. The pain was insane. Oddly my post herpetic nerve result was not pain but complete numbness of that area which lasted years but seems almost completely diminished now. I could not tell if my bra or swimsuit top were covering so I quit going to the club swimming pool or beach vacations. There was always an itchy sensation which I think were nerve fibers coming back online. I know nerve fibers take a long time to repair but mine did except for a small localized area where the initial blisters appeared. Shingles manifest differently.
I had a severe bout of shingles starting in June of 2021 not so much in the shingles rash but I lost all of my energy for months and because I caught them too late the acyclovir did not work. As the rash subsided I developed low back discomfort to the point I had to lie down every afternoon and keep a low profile for the rest of each day. My life was somewhat miserable and I thought I would never get rid of the pain and did not know if I would ever be able to attend a function that happened past 3 pm again. I was used to pain because of woes suffered in a car accident years ago but that pain did not actually keep me from doing things. I could keep on trucking and live with the discomfort.
I can only tell you that the post herpetic neuralgia did finally start to subside after 8 months. I am now back to my usual pain shots every four months and I have a life again. It has been a year since it started to improve and I can say I have improved even more over that year.
I write this to give you hope. It took time but it got better and the study I made of post herpetic neuralgia indicated that it often subsides in a year. I hope you will get better as I did. Don't give up hope even though it is tough. I did a lot of mindfulness meditation and it helped. Sara Raymond has excellent videos on youtube.
I got shingles after my initial treatment for CLL and having my spleen removed. I had a massive case and was hospitalized for several days. I tried the following medications: gabapentin 3600mg.p/o/q.day-ineffective, nortriptyline-ineffective, amitriptyline-ineffective,cymbalta -ineffective,ketamine/amitriptyline cream-ineffective. I also tried CBT, biofeedback, meditation, massage therapy, acupuncture and spinal injections of steroids.
I am treated by the Mayo Clinic pain center and I now use lidocaine patches or lidocaine lotion as needed. I take15-20 mg. of oxycodone per day in small doses of 2.5-5 mg and 3mg of naltrexone at bedtime. They offered Botox treatment, but it is very expensive and not covered by insurance. It also make me nervous about a potential bad reaction, so I opted not to pursue that treatment option.
I have had this pain for six years and understand what you are experiencing. At this point I don't expect it to resolve itself, but the current treatment makes it tolerable. The pain is quite uncomfortable at times, but I know that people endure much worse pain in their lives and I am grateful for the relief I get from my current meds.
I suffer from PHN , Postherpetic Neuralgia--- from 3 yrs ago. I got shingle 5 weeks after my stomach cancer surgery 2020 feb. I took the original shingles vaccine before I did the FCR treatment-2016/17- for my CLL. Now there is a better vaccine. My GP said there was a fifty percent chance I would still get shingles even if I took the vaccine but worth a try. White scaring (Looks like I have been burned by fire)on my back left side wraps around to the side and over to the breast areas where I have white scaring also. If I brush my hair down the left side it sends shooting pain all over the left side today 2023. It effected my esophagus and it was painful to swallow any drink or food, back then I thought it was due to my stomach removal and other organs , but now I know it was the shingles that had gone internally as of this yr there is finally little pain when swallowing.
This was in the midth of covid so all visit with Dr were over the phone and I was given at least 12 different medication and none worked. I was also battling learning how to eat again due to the stomach and duodenum cut off.
In 2022, mentally I was exhausted and begged my Dr for an opioid which she said would never work. I told her that I was not going to live like this much longer.
She prescribed hydromorphone.. and finally in 2 yrs, in the first hour of taking hydromorphone , I got relief. All that pain and misery for nothing because Dr are afraid to prescribe an opium. In which a person never gets hooked on if they really have pain. And most people who are hooked don’t take it for pain, they take it to get high. I never get a high, just pain relief.
A person has to use common sense and not use any pain pills if they don’t need it. Some days I don’t use all the prescribed dose, but why suffer in pain as I did.
Hope this helps. Hydromorphone also helps with my lymphoma pain which is pressing on my spine and every where in my body shown on CT scan. . I was tested in 2022 and I have 17P deletion, TP53 mutation and IGHV unmutated, so waiting to see what treatment will work, not much available , not rushing.
Thank you for your kind reply. I am glad that you finally found some relief, I am sorry that it took so long. I will discuss hydromorphone with my pain specialist. I was on oramorph when I was in hospital and it did seem very effective.
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A brief update post Venetoclax+Rituximab - treatment number 4
First post & Ibrutinib
CLL person - 1st post
Post FCR - stopping Aciclovir
