[annlynnParticipant]

Steriod come down please tell me everyone feels this rubbish 2day after steroids everything seems wrong could fight with a fly  and feel week as a kitten sure it passes but of the best way to feel on a sat hanging on to the fact 9treatments down 9to go  love to all

[CarolsymonsParticipant]

Hi
I know it is terrible! I used to feel sorry for my poor husband who couldn’t do or say anything right! Doctor gave me “come down days” taking 10, 5 then 2 steroids after the high dose. Mainly because my heart slowed own drastically on the withdrawal. But the lower doses helped with the withdrawal symptoms. So glad I am off all treatment at the moment (9 weeks post transplant)

Carol

[annlynnParticipant]

Thanks for that at least I know it’s not just me it’s the tears that’s the worst I cry for England at the minute never mind just want to get to were you are hopefully. I watch your posts with interest thank you x

[CarolsymonsParticipant]

Hi again

I read your earlier posts and can feel the fear you express about SCT. But honestly the CDT side effects were (at least for me) worse than the transplant. For about the last 6 weeks of the 18 week CDT course, I could barely function. But we all just do what we can to get through whatever we have to do to survive. I have a saying on my Facebook page I found somewhere but it is so true….”You never know how strong you are until being strong is the only choice you have.” Dry your tears….you have lots to live for and somehow will find the strength to get through to remission and hopefully a better quality of life. All my family…mum, 3 sisters, 4 kids and 4 grand kids are all in Austalia and if all goes to plan I will be back home by mid July……fingers crossed my remission holds this time……

Carol

[jeff605Participant]

I discovered that once I realised what was causing my deep depression on the second day off steroids (after about four cycles of Dex I was shouting at the cat who wanted feeding and thought ” this isn’t right” and started trying to find out why) I found it much easier to deal with,( i.e.stop indoors and don’t speak to anyone !!!) . I am not treating this lightly, I know how horrible it is, I am starting a new course of Revlimid and Dex tomorrow, and not looking forward to the effects of the dreaded Dex at all. So don’t think you are alone in this, it’s one more part of fighting this horrible disease. However, it is so distressing, I do think we could have better counselling prior to starting taking Dex.
Best wishes for the future, Jeff

[eveParticipant]

Hi All

I think once you understand what’s going on it’s easier to take control of,keep yourself busy,telling the cat off is a good one,it cannot answer back,as a carer the one thing that use to annoy me,was my hubby could not see it was the Dex that made him so stubborn and argumentative as time goes on it does get easier. I use to keep a bit of a record,next to the tablet regime,which helped specially when he had any symptoms of general illness and fatigue . Eve

[HelenRParticipant]

Hi,

I have that too! I currently have 20mg Dex on day of velcade and day after, so it’s Fri/ Sat, Mon/Tues for each of the first two weeks. Like you say, for me it’s two days after that the comedown happens: so for me Thursday is just totally a non-day. I feel utterly rubbish and can’t do anything at all. But at least now I know that so I plan for it, just stay at home, sign off work sick, etc. I can barely even watch TV. By the afternoon I might make it out to a cafe just next to my house, or for a walk in the park, but even that feels a bit difficult! I don’t really want to see people either but if family are around they sometimes drop by and help me out a bit – tidy up the kitchen which tends to be piling up with dishes from all the junk food I’ve been eating with Dex appetite 🙂

Helen

[PerkymiteParticipant]

Dexamethasone (steriod) is well know for its side affects. I used to take 20 mg on a Monday Morning. Results; could not sleep at all Monday night. I could climb mount Everest Tuesday – by myself, Wednesday/Thursday I would get grumpy Thursday night I was shattered, Friday Saturday and Sunday were near normal. then back to Dex on Monday.

Because of my good results – I am now officially in “Good Remission” after 5 years of treatment, they recently reduced my dose to 10 mg which is a little better but the jury is still out on that, because I am still awake at the moment!!!

kindest regards – vasbyte

David

[Author]

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