Having got through several rounds of treatment with some success in reducing the ‘bad’ levels, I have suddenly developed shingles, probably as a result of my depressed immune system.
I write the next bit more for the benefit of fellow myeloma sufferers who may get the disease! So friends can skip the gory details.
Shingles presents differently for different people, so mine is only one experience and yours might be dealt with in a different way, depending on your age, state of health and the location of the rash. In immuno-compromised patients and the elderly it can be dangerous so make sure you get treatment immediately you suspect it.
I started off with an increasingly severe and mysterious pain/deep ache developing round my trunk from the right back, spreading over a day or so to under my right ribs. It also felt oddly tingly sometimes. I was baffled by it (I have had my gallbladder out so it couldn’t be that!) and combined with my normal drug side-effects felt very miserable. Went to the hospital on Monday, after suffering over the weekend. Nothing showed up but my consultant noticed a couple of small red spots and said it could be shingles but was reluctant to begin treatment until more spots appeared. It’s really difficult to diagnose – people occasionally have their appendix out by mistake!!
On Tuesday I had to go for my Warfarin INR test at the GPs and the rash had suddenly spread under my arm. The nurse took a look and said it was shingles. To save time my GP prescribed aciclovir, an anti-viral 800mg x5 a day. The earlier you get an anti-viral the better.
The next couple of days I was in a huge amount of pain – and I say that as someone who tolerates pain quite well. Shingles runs along a nerve (can be anywhere) and mine is just under my ribcage. I had very sharp stabbing pains, especially when I stood or tried to walk, enough to make me catch my breath. I could hardly do anything and I couldn’t sleep properly. Totally miserable and I should have got help earlier.
Eventually I rang the GP and she gave me co-codamol and also imipramine, which is an anti-depressant, but which can be used in a very small dose for nerve pain. I don’t know which drug (Acyclovir or imipramine) worked, but by the next day the sharp pains had reduced considerably. I don’t tolerate co-codamol very well so only took 3 or 4 over a day or so and then stopped.
By now I had (and still have) a pretty big rash, on my right side from mid front to nearly mid back. It looks red and blotchy, scattered with pustules like chickenpox. The rash can continue to develop and spread for up to a week. I have also felt generally poorly with my temperature up a bit and sweating esp at night. The medication gives me terrible acid and I have felt dizzy, which is probably the meds too. My skin is generally sore, not just my rash. The rash itself is tender and a bit itchy, but I have slathered calamine lotion over it twice a day.
Into hospital today for a myeloma appt, and as my neutrofils (measure immune levels) were very low, all my treatment has been suspended for at least a week (ie both revlimid and steroids).
My blood levels for my Warfarin treatment have also gone haywire – rocketing up well above the norm and then pummeting dramatically after the dose was cut. This is due as much to the drugs as the illness. This means having a blood test every 3 to 4 days to change the dosage.
At this stage I can say that the worst pain is gone but last night on lying down I had quite a lot of strong ‘electric shock’ sensations mid back, especially lying on my right side. It’s like a shooting sensation down a nerve all down my back and makes me twitch. I’m hoping this isn’t a sign that I will get the dreaded post-herpetic neuralgia – that is pain that lasts for weeks, months or even years after a bout of shingles. I already have peuripheral neuropathy in my feet and apparently that can make you more vulnerable to lasting pain. However, there are some drug treatments and it might never happen! Let’s take an optimistic view!
I still feel very tired and sore but can walk around. I have a vague headache on and off.
It’s all a bit disappointing as I did a lot of work on our local anti-cuts campaign and then couldn’t go to the public meeting which we organised and won’t be able to go to the next meeting or Trades Council. However, you’d be surprised what you can do from the computer!!
To sumarise a few issues:
If you get a mysterious band of pain developing anywhere or itching/tender skin, consider shingles.
If it’s on your face/head get seen quickly!
You don’t catch it from people with chickenpox. It comes from the chickenpox virus luring within you and popping out!! Shingles isn’t catching either. You can rarely give chickenpox to others via the rash, so avoid people, esp small children and pregnant women until your last scab drops off.
Get an anti-viral asap. Don’t be a hero – get something for the pain if it’s bad – sooner rather than later. It may help with quicker recovery too. If I had known I would have got the imipramine earlier. Good old calamine for the rash. Can also use icepacks – I haven’t personally, but might try it as the rash does feel hot and itchy.
If you have a low immune system already, you may need to cut back on eg anti-cancer drugs, so ask your consultant.
If you are on Warfarin, you will need to tell the anti-coag people about it and the drugs and get regularly tested.
Take it easy.That’s an order! You wouldn’t believe how many books I’ve read….
Don’t get the rash wet. Keep as clean as possible and try not to touch or scratch your rash – wear loose clothes.
Get others to drive you to appointments or get a taxi – I have been quite befuddled. Still am, so if this is full of typos – that’s my excuse.
Hope this is helpful – if I can remember how to do it I will add a link or two.
Will catch up with the story in a few days!