• December 31, 2010 /  Myeloma

    I hope you all have a Happy New Year. We are going to be spending it very quietly, with just my son and daughter-in-law round.

    I am really tired, having gone out yesterday for the first time for weeks with my daughter to do some party clothes shopping for her! I was probably out 3 hours. Got her a lovely dress but today I can hardly keep my eyes open despite having slept late, and I feel very shaky.

    Re the shingles: the Gabapentin seems to be getting rid of the twitching back muscles, but not touching the nerve pain round my trunk, so 50% success I suppose. It also makes me amazingly sleepy and stupid – hopefully I will get more accustomed to it soon, but I seem to remember that the side effects didn’t wear off last time. The site of my rash is still red and a bit tender. I had some success with Sudocrem when it was still quite inflamed, but am now using a good moisturiser on the advice of the doctor and it seems to be gradually fading.

    I am just coming to the end of my latest cycle of 3 weeks which probably explains why I feel a bit grottier than usual – from next Tues I get a week off the Revlimid. I have had some mood swings the last day or so – very irritable mainly – I just tell myself it’s the pills (usually withdrawal from the steroids) and retreat away from everyone in case I start getting snappy!!

    My Warfarin levels are all over the place – they were getting on the high side a week ago, but then my last one was really low, so no idea what is causing that. I thought Gabapentin might be to blame but a bit of research on the internet found that it shouldn’t be a problem.

    Hoping that the improvement in my blood levels over the past few months continues – I will have another test in a bit over a week’s time. Revlimid can be a really good long-term treatment for myeloma.

    All the best to everyone and thanks very much to all those who have kept in touch and visited – it really helps!

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  • December 7, 2010 /  Myeloma

    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!

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  • September 15, 2010 /  Uncategorized

    I have now completed the first round of three weeks of Revlimid and then a week off. Just started the next round. No indication yet of whether it’s working as it can take quite a while. My first blood test has just gone off the London and could take at least a couple of weeks to return.

    It was a bit of a shock to the system, and it brought it home to me that my health is gradually deteriorating.I was surprised how quickly the side effects knocked me sideways.

    For fellow myeloma sufferers the details are: One Revlimid a day, 40 mg steroids once a week, Warfarin to prevent DVT, and the usual clutch of anti fungals, Bonefos etc. Also lactulose for constipation, calcium as my levels went down.

    Having just had a week off Revlimid, I feel it’s the steroids that affect me most – the shakes, especially in my hands, muscle weakness and twingeing (also sometimes internally), bad withdrawal from the third day after, low mood, very tired, swollen hands etc. Not sure about the Revlimid – they do make you tired too and my immune system is going down. I had a very few odd red spots but not the dreaded rash that some people have.  I did have some mouth problems after having bitten my cheek and then finding my whole mouth got sore, but have just used Difflam to get rid of it (ruins your taste buds!).  I find I have to nap during steroid withdrawal.

    I am trying to eat well (am hungry with the steroids but do need to put on some weight after my low fat diet) and am trying to go on my cross-trainer everyday. Also using a circulation booster on my feet – they help a little with peripheral neuropathy and prevent DVT in my legs.

    I still haven’t got my Warfarin blood test levels up to where they are needed – maybe due to my diet with lots of green veg! But they are gradually increasing the dose.

    So toodling along and just getting used to planning my week around the pill cycles. I make a to-do list for Tue/Wed as the steroids mean I can get quite a bit done – today was very successful! Yesterday I did the hospital in the morning and a demo against the cuts in the afternoon! Then a visit from a friend later! Yes I am knackered but all the union stuff keeps my brain working.At the end of every day I write down my meds and how I feel, which helps when you think you feel bad on eg day 4 you can look back and see you did the previous week and not to worry. Also helps at appointments. But also I write at least 4 positive things down too!

    Many thanks for visitors, postcards, emails and comments on my blog. All really helps. Visitors very welcome if you are healthy!

    Will try and update again soon.

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