Hello everyone , just a quick update on my husbands condition - he was admitted to A & E 10 days ago ( different hospital to cll treatment) with pain around left side rib cage radiating up to left shoulder. The hospital did a cardio gram which was fine, took a blood test which said the opposite but said they were 99% sure he hadn’t had a heart attack ( he had no previous heart problems ). They did various other tests which found nothing so decided they were going to slow his heart rate down to do a final test, which was also fine. It was then decided that his spleen was the cause of the pain. I should say he had been in worsening pain for 3 days before being admitted, on third hospital day a nasty rash appeared around left rib cage. You’ve guessed it - shingles. I knew what it was but they did a test and left him the best part of 24 hrs before giving him ant virals. Anybody having had this will know it’s not pretty. Now 10 days later he’s home and hospital have said that while his spleen is slightly enlarged it’s not big enough to cause the pain he has. Best wishes everyone Lesley
Shingles : Hello everyone , just a quick update... - CLL Support
Shingles
Hi Lesley, I also got Shingles in June with exactly the same symptoms. So much pain. I thought it was mosquito bites!! My worry was passing it on to my husband as like you, I am his caregiver.Here in Italy, the vaccine Shingrix costs €500 for both and its the only ‘non live’ vaccine for shingles. Did your husband get the vaccine? Is it offered where you are?
Thanks
Hi, no my husband was told not to have the vaccine and not offered the shingrix- not sure if that’s available in uk . Lesley
Lesley it was approved by NICE at the beginning of September for 70-80 though some members are saying GP’s are stretching that age group if consultant agrees.Colette
Hi Mrs Smith. I have booked an appointment with my GP for the shingles jab shingrix tomorrow. As I am only 68 I will have to pay for it. The NHS charges £192 inc VAT each jab. Its not ideal as maybe those of us at an increased risk should not have to wait until being 70 to get it free on the NHS. But at least we in the UK now get it whereas before we couldn't.
It was available privately before in UK I had the 2x jabs at the beginning of 2021.. £500 for the two
That’s really helpful thank you. After seeing the pain he’s in, that seems a small price to pay, although vulnerable people should be entitled to it any. I think it would have been cheaper to give him the vaccine rather than look after him in hospital for ten days, half of it in an isolation room. Best wishes Lesley
I am getting it free from my GP and I have early stage CLL and am only 58.
Thank you. We will look into this as I believe you can have shingles more than once? Lesley
My consultant recommended it after I emailed her asking about availability. That seemed to be the open sesame.
I had shingles twice in my 50s, it was in an unfortunate place inbetween the top of my legs inside, i call my undercarriage, excrutinate pain for 7 days when i couldnt sit down, i had to stand or lie down.. im wondering now if i should have vaccine being 69yrs
Hi Emily. You are lucky and I am so glad for you. It always seems a bit of a lottery within the NHS.
It’s a pity your GP wasn’t flexible as I believe some members here have found.
Colette
Hi Colette. The GP did try to help as she asked if my CLL consultant could recommend that it was beneficial to me. However I just got the answer that the NHS was only vaccinating those between 70-80 for free.
Kind regards S
At least you will have reassurance of the cover. I had shingles a few years ago but luckily mine wasn’t too painful. Mine was caused by stress, so all of you out there stressing try to stop.
Colette
You need to tell your consultant that others are being given it. See the details I have posted below. My consultants are particularly hot on vaccinating me for everything in sight that's non-live since I am at early stage CLL so particularly likely to mount an immune response which will protect me in the future.
Thanks we’ll get on to that .
You are entitled to this. Rules are particularly clear for those aged 70 to 80. For younger people like me it might depend on what the consultant says. It's new from 1st September. You might need to push. My consultant sent me a link to the government website:
gov.uk/government/publicati...
It says:
From 1 September 2021, GPs should offer the non-live shingles vaccine Shingrix® to all those who are eligible for shingles vaccination but are clinically contraindicated to receive the live vaccine Zostavax® due to their immunocompromised status. This is based on the recommendation made by the Joint Committee on Vaccination and Immunisation (JCVI).
In line with the current requirements of the shingles programme, the vaccine will be offered via a proactive call to those becoming eligible at 70 years old and will be offered opportunistically or if requested for those over 70 years until the age of 80.
The introduction of this inactivated shingles vaccine follows the recommendation made by the JCVI that Shingrix® should be offered to all immunocompromised people for whom Zostavax® is contraindicated but who are eligible for vaccination under the current programme, so that they can gain a similar level of protection to those who are not immunocompromised.
The Committee noted that vaccination in this group was particularly important, due to the higher incidence of herpes zoster.
Emily ,
Thank you for that useful link and you are lucky with your consultant. Some of us have had to drag that information out of our consultants and then meet opposition with surgery nurses. Keeps us on our toes.
Colette
They were slow at picking that up - they should have asked a GP! I am sorry to hear it though, plus the uncomfortable time he had in the hospital when he should have been home. I hope the antivirals will shorten the length of the disease for him. Cx
How thoroughly miserable and painful for him Lesley (and I bet you’ve had a hard time worrying about him too!) Sending best wishes that this passes soon without after effects!
Newdawn
Thank you , interesting to see that there is quite a bit of publicity about shingles on tv at the moment, wondering if GPS are seeing more cases of it for some reason. Lesley
My shingles 2 cases followed obtaining my two Covid vaccines
Hi Lesley. I’m so sorry to hear about the rubbish time you’ve both been having, but so glad that your husband is home… you can, hopefully, relax a bit more now and he’ll soon feel a lot better.Paul had shingles a few years ago…as you say, it’s really not very nice at all 😕
Take care and stay safe,
Fran 😷
Thank you 😊 you stay safe too. Lesley
Lesley, sorry to hear that your husband has shingles and I hope he recovers quickly. My husband was diagnosed with it about 4 weeks ago but is still a bit sore. He’s been told to have the Shringrix vaccine but his consultant says he must wait until it’s fully cleared up.
Take care,
Jackie
Internal shingles was what sent my husband to the hospital and ultimately led to his CLL diagnosis. He had terrible abdominal pains of unknown origin. After CT scans and the like they did note lymphadenopathy but saw no real cause for the pain until 2 days later the tell tale rash appeared from his mid back waist area to mid abdomen - shingles.
Hi thank you for your reply. Do you mind me ask how long he was in pain for and do you remember if he had nausea? Thanks Lesley
He only had pain until the shingles appeared on the skin at that point he was discharged and was seen by the dermatologist and he had a pretty easy course. The rash really did d not bother him that much. I had shingles earlier this year and had internal pain not that terrible for a couple of days in the upper back area before the shingles appeared but the rash never was that bad I had more of a dull aching pain in my back and under breast area that went away in about a month.
I had shingles in July the same as your husband. I’m WW untreated 10 years. The pain was so bad and it took me 10 weeks to recover. I’m fine now. I have had my first dose of Shingrix and getting the second soon. Never do I want to experience shingles again! I wish your husband a speedy recovery. 🙏
So sorry to hear of your experience. The shingrix vaccine is available here in the UK . It’s free if you are over 70. However if you get a letter recommending it from your consultant then you can get it earlier. I am 69 and got it done for free at my GP surgery about a month ago. Second dose due in December. The GP is allowed to sign a waiver to allow this if the consultant recommends. I had no adverse reaction and would recommend asking your GP.
So sorry to hear about your husband and I hope he feels better soon ,I am 62 and have received my first shingrex vaccine with the second being given end of November, my GP just needed a letter from the consultant before he would give it to me xx
Sorry to hear about your experience. I am on W&W in UK and over 70. I contacted my GP about getting the shingrix vaccine and had no problems getting it 2 weeks ago. However my wife, who doesn't have CLL and is also over 70 was told earlier this year that as she lives with me she couldnt have the live vaccine. I have now asked if she can have the Shingrix vaccine or live vaccine now. Both the nurse and GP at my practice are trying very hard to get an answer to this question. I will post when I get the clarification.
Glad he is home, I have had shingles and I know how horrible it is.
Liz x
Thank you x
Is your husband back on treatment? If so, his consultant is unlikely to recommend Shingrix until his white cells have recovered enough to respond well to the vaccine. In the meantime an intensive course of Aciclovir should see off the shingles, continued as a daily maintenance dose.
I hear that Shingrix is in short supply in the UK.
Hi no but treatment is coming very soon. Lesley
I see. Well, best wishes from here on.
Here's hoping your husband has a speedy recovery. I had shingles, fortunately a mild case, and self-treated with clotrimazole, which can actually be found over the counter in local Dollar Tree stores in the US. Good luck to him.
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