Does anyone else have re-occurring Shingles?
I was diagnosed with CLL in 2003 and I have been such a lucky girl and I have been on watch and wait ever since. However in 2013 we decided to downsize and the stress of selling and buying properties I believe triggered my shingles (I was never offered the Shingles vaccine). Since then my shingles flares up every time I overdo it emotionally or physically or get personally stressed. The shingles originated across my back at waist level and down my left leg. This followed my osteoporosis weak points. Now my shingles can flare up anywhere at all in my body. I would love to hear the experiences of others.
I don’t have shingles, but I think I read recently that shingles vaccine is a live vaccine so cannot be offered to people with compromised immune systems. Hope you are resting up xx
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Thanks, yes, you are right live vaccines cannot be used on people with compromised immune systems. Take care.
Erica, three weeks after I was diagnosed I developed Shingles. My consultant said it is a common occurrence for us. However YOU CAN NOT have the shingles vaccine as it’s a live vaccine which we can’t have. Are you on Aciclovar? My consultant told me if I get it again, two weeks should be prescribed as one week is not enough. Keep well. Xxx
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Different doctors have different views about what do do about shingles. But mine has me on 400mg aciclovir twice a day with a hope of preventing shingles (which I had a couple of time’s many years before diagnosis when presumably my immune system was already weak).
It’s perhaps worth talking to your specialist about whether you should stay on prophylactic treatment or not. You could even ask to be seen by an immunologist and also ensure you’ve had all relevant vaccines and if necessary you are also on any other prophylactic antibiotics you might need to be on. I also take azithromycin and cotrimoxazole. And despite that cocktail. I seem to get bacterial infections quite often and need long courses of Co amoxiclav to shift them.
Everyone is different of course and you need to get specific advice tailored to your situation. Some people also need antibody replacement therapy (IVIG / SCIG) and you could ask if your antibody levels have been checked.
But one final point, you mentioned it happens with stress. Maybe there is some way to reduce your stress levels?
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Oh, Adrian, I do try to reduce my stress, which has got a lot worse since diagnosis. I try to and do plan ahead etc., but I think it is connected to my fatigue. Everything is suddenly all too much and I am also more emotional since diagnosis and at such times I just feel like crying. I am aware of Mindfulness techniques as well. Do you suffer with stress?
This is an interesting topic; my experience was slightly different, in that the shingles preceded diagnosis and I’ve always had a suspicion that it may have triggered the thrombocythemia. As far as I know, there’s no evidence of such a link, but it does make you think. The site of the shingles is still slightly tender, but it’s not so far flared up again in 7 years. Will hope to keep it that way.
Strongly support the suggestions to avoid, or try to control, stress. There definitely sems to be a link between stress, inflammation and blood cancers. Easy to say “don’t get stressed”, but life ain’t like that, unfortunately.
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Hi, I went to a CLL Support Association conference today and there was discussion about our susceptibility to shingles. Interesting to me personally was the connection to irregular heart beats, dental problems, skin cancer and secondary cancers as well as the other symptoms we are more aware to look out for. The emotional effects of diagnosis and living with were also discussed and yes, the word stress was mentioned !!
Hi Erica
I thought I had Shingles, for the third time, and it was confirmed by the Consultant yesterday. He’s put me on Aciclover. As I also have Immune Deficiency ( have to infuse every week with Immunoglobulin), I think it’s just one of those things I have to deal with. I am mindful that the alternative is much worse, so I try to just get on with it - not easy as I also have a chest infection, and am on a two week course of antibiotics. I think that when we are stressed and run down, we get everything that is going. Do you have the flu vaccine? I haven’t had it for the last two years as it doesn’t agree with me at all! However, I know that I should have it, but don’t want to make myself ill when I’ve got enough going on
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Hi Lulu, yes, you have got enough going on. I always have a (non live) virus flu jab and it seems to work for me. I am also so used to having the shingles that I just get on with it too, I have checked out that I am not infectious. I do find that antibiotics often make me feel yukky. However I have to say since I had a hysterectomy (which I did not know I needed) and bladder prolapse ops my urine infections have really diminished and I have felt a lot better. I agree when I get stressed and run down I catch everything going and it is so hard to build back up. Let us know if the 2 week course of antibiotics helps your chest infection and take lots of care of yourself and spoil yourself.
Having foolishly said the shingles hadn’t flared up again, had a bit of a worry Saturday when the site of the original flare-up got quite noticeably sore. Looking in the medicine cupboard, there was the end of a tube of Capsaicin, which the GP had prescribed to (supposedly!) reduce the pain of the original infection. It didn’t seem to do much good then, but decided to give it a try and the discomfort did subside quite quickly. No idea if this was cause/effect, placebo effect or just chance, but thought it was worth sharing.
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Oh, no, don’t mention the shingles word ever again, although you can talk about it on our community forum. Let us know how you get on.
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Hi Erica - I have just seen this so apologies for being late to the party. Like Adrian, I am on aciclovir 400 mg x 2 a day. This was introduced on a permanent basis when I first started on ruxolitinib as it was thought the drug can trigger it. Other than that, I may be more prone because I had shingles once a few years ago (although luckily I caught it quickly and it wasn’t too bad). However, I also have had for several years now periodic outbreaks of what has been diagnosed as shingles (one small area on my lower back) but has always seemed to me to be more like impetigo. It is random but does, like yours, seem to be triggered by stress. Whatever it was/is, and I hold my breath whilst saying this, it has not recurred since I’ve been on daily aciclovir. Maybe you can ask your doctor about this? All the best, Marilyn
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Thanks. Marilyn, for this response, it is always interesting to hear other’s experiences. I have also wondered if it is always shingles, but I think it is, I do not think it is more of a skin complaint. It definitely seems to be connected with being stressed, emotionally or physically and run down but I am never sure what comes first. We are complex beings that need to be looked at holistically. Take care.
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