[PerkymiteParticipant]

I take Dex k, 10mg per week on a Monday, with Revilimide daily. I used to take 20 mg but it was reduced to try to alleviate the side affects. I am normally up all Monday night – no sleep at all- and Tuesday can be patchy, some sleep during the day and some at night. The thing I feel really uncomfortable about is the under the skin crawlies. Tuesday/Wednesday I get bouts of it. It is like you have an army of spiders under your skin. I put it down to withdrawal affects and my body wanting more steroids (Dex).

Kindest regards – vasbyte

David

[bandityogaParticipant]

Sarah

Ian did not have vertebroplasty either for his spinal compression. He has 4 operations to date. First to put in 2 pins to support the spine, 2nd to clean out wound as he had sepsis, 3rd to take out 1 pin, 4th to take out last pin as he had an infection .

If you have a social worker, I would push for physio at home. The reach team should come out twice a week.

Helen

Hope you are doing well on the velcade and steroids. Ian is very argumentative and emotional on the2nd day of steroids and day after. I was glad to escape for some respite yesterday.

Maureen x

[SalParticipant]

Thanks all.

We’re going in tomorrow morning for the first lot of dex to go with the start of the 5th cycle of Velcade and Cyclophosphamide. I will be constantly checking for side-effects I’m sure, although I have to go to a conference all day Saturday, which will cause me to worry in other ways. We will both try to keep calm about it as anxiety won’t help.

David – the spider feeling sounds horrible. I haven’t heard of that before. M had bad hiccups when he had dex before but the nurses told him it was after-effects of the anaesthetic after surgery. Not a major problem but painful with a damaged spine. Will take Eve’s advice on board if he has problems this time round.

Maureen – he doesn’t have a social worker. No one has mentioned it. Hopefully Tuesday’s physio will not be cancelled and he will get the referral to the hydrotherapy pool too. I’d be very happy to help out with that – nice warm water and a bit of splashing around sounds like a much more pleasant form of treatment than most.

I do feel much more prepared thanks to all your advice. All very helpful.

Sarah

[jane-wrenchParticipant]

Dex seems to affect different people in different ways – but I think insomnia is common to all! When I started my velcade, cyclophosphamide and dex treatment it was twice a week velcade, so four times a week dex- and i got very little sleep! Also hyperactive on dex days and into a slump in between. It was reduced to once a week, then once a fortnight eventually with dex 2days a fortnight – even on that low dose, I find I’m full of energy for 2/3 days then very low as it wears off. Have to adjust life to fit in with dex! I keep a kettle in my bedroom so I can make camomile tea at 3a.m. if necessary! Can be expensive too- I spend a lot of time online during the sleepless hours- shopping is very therapeutic! In the early days of dex I bought an exercise bike online in the middle of the night – well worth it as I often feel unable to drive as the dex seems to affect my vision, so instead of going to the gym, I get on my bike! But as others have said, the dex dose can easily be adjusted and I think lower doses are still effective.

jane

[bandityogaParticipant]

Sarah

Ian got social worker when he was discharged from local community hospital. She arranged carers (which we no longer require, a wet room, for which we received a grant. Not means tested and the reach team for physio. Ask your MacMillan nurse.

Hope M is doing well on the steroids.

Maureen x

[SalParticipant]

So far so good. M had his chemo on Friday and took 20mg of dex on Fri and Sat. He slept really well on both nights, has had a few hiccups, which he controls with breathing exercises, and has seemed quite “normal” (he’s a bit quirky at the best of times :-)).

I know the side-effects of some drugs build up over time, but is this the case with steroids? Do those of you who have dex side-effects find that they are pretty much the same week by week or  do they build up – or is it like everything else with myeloma and different from person-to-person?

Thanks,

Sarah

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