[JetParticipant]

I know this is a bit controversial, but felt I had to make a positive stand on behalf of Dexamethasone. On this site, I read so many comments about bad experiences of being on the steroids.

My experience is feeling much more energetic, excited, creative, the dry skin I get on Revlimid lessens and my hair feels better, almost complete reduction in taking pain killers because I barely have any pain. I also think it improves my appetite and digestive problems.

I only take Dex for two four day periods each four weeks, so no hamster face or weight increase. If only!!!! I'm still around 60kg. I lost 14kg (30lbs) during January when I was ill and couldn't eat due to (undiagnosed) hypercalcaemia, prior to going into hospital and getting my MM diagnosis.

The only potentially bad side effect is insomnia. I usually wake up around 3 or 4am and am awake till morning. But being so lively and creative, I happily use this time to write my blog (jetblackliving.wordpress.com), to catch up on emails and chat to other online friends. I don't work or have children, so no stress about needing to get up in the morning.

Basically what I'm saying is [b]I really love taking Dex[/b] – makes a very welcome change from the shaking, fatigue, confusion, dryness and emotional upset I get on Revlimid.

It occurred to me that maybe it's mostly men who seem to have a bad experience. How do other women fare on Dex? Or is there anyone else who has a good Dex experience.

[brochoParticipant]

Hi Jet I am glad you find dex so exhillirating , unfortunately I am the polar opposite Apart from the insomnia I retain fluid and although I was on the same dose as you Ido have a hamster face The last few months being on Rev and Dex have been awful for the first 5 days of the cycle My whole body was painful and tender for days so now I am going to try taking dex on one day oeach of the 4 weeks, fingers crossed it will work .I was diagnosed 4 years ago and have always had problems with dex ,the worst being how it affects my taste buds so everything tastes foulMy feeling would be you are one lucky lady and there are probably more who dont have your luck so enjoy! love Bridget

[JetParticipant]

So sorry you have such a bad experience, Bridget.

I also have taste problems, which is possibly the most distressing of all side effects and the worst effect on my "quality of life", but I put it down to the Revlimid, not the Dex. Hmmm…

[brochoParticipant]

Hi Jet the taste thing happened to me when I first had it Ihad been in hospital for 6 weeks and after my back surgery was on massive doses of dex, 80 mg twice daily, needless to say this made me very greedy!! Some friends were begged to bring me something savourywhich they did bless em!! Well I ate a whole bag of baby bells before they had sat down but out of politeness thought it better to have the pickled onions after visiting was over. No sooner had they left and after a heroic battle with the lid I scoffed one , onlyto spit it right out !! It tasted of soapy chocolate,completely disgusting It took 2 years before I could eat anything vinegary again Still I couldnt help laughing wondering what the other patients thought and my friends just about fell over laughing!! Still thats one thing I have learnt living with mm there is always a funny side!! love Bridget x

[eveParticipant]

Hi Jet and Bridget

I do not think gender is the key,My partner on ctd takes 20 tablets 2mg dose 4 days running then repeats dose after 7 days.his chemo cycle is 21 days!!!!

has a good quality of life when on dex although a bit short tempered,takes a few days off dex and is very very tired,hot and cold,not wanting to eat.

The strange thing I find is no weight gain or looking puffy,He lost over 3stone very much your story jet,no extra weight gain with dex.
the only thing he has taken a dislike to is red wine,and he now enjoys sweet things!!!

The strange thing is if you look at mx1 trial people we might be split into 2 groups ctd and crd but people seem to be on different doses so how can they compare.I believe your own consultent decides the actual dose.Has anybody else noticed this.

[brochoParticipant]

Hi Eve I believe you are right in thinking the dose is determined by our doctors , based on individual circumstances. When I was diagnosed I had a massive tumour from my spine into my ribs therefore I was on 80mg dex twice a day for 3 weeks to reduce the tumour, thankfully I have not neede such large doses since However in both my relapses I developed new tumours so the dex dose was increased . I also believe the effects of dex can be changed according to which chemo drugs are taken with it When I was on velcade and dexthe side effects were not as severe as now when taking Revlimid with itThis could be because of all the chemo I have had , more or less continually as well I suppose The main diffrences though are that we all react diffrently in just about every aspect of myeloma so it would be difficult to have a standard dose for everyone love Bridget x

[JetParticipant]

Hi Eve

Yes, it does seem to be such an individual disease. and dosage decided based on blood and kidney results. I don't think my Dex or chemo drugs are different to "the norm". But for Revlimid, I have been told that my dose is lower due to my current (poor but improving!!!!!) kidney function.

I currently take 15mg Revlimid every other day, but once my kidney function improves, this will go to a daily dose of 10mg, which may then increase to 15 or 20mg daily. Of course, I may not get to a higher dose if my paraprotein counts reach the low plateau they're hoping for in the next few months, when they will put me forward for a stem cell transplant.

Please could anyone responding to the original questions about Dex, reply to the original post, as we seem to have gone a little off on a tangent here.

Thanks!
Jet

[kaychappersParticipant]

Hi Jet sorry but I also have the bad experiences on Dex. I was on 20 tablets of 2mg for four days twice in my cycle of CTD. I ripped through my bank account on the first lot. I bought everything in sight I was so high. But it was the come down that was worse, blurred vision, ratty, exhausted. My weight has ballooned and the taste in my mouth is awful which makes me eat even more. My last cycle they reduced them to half and it has not been so bad at all. The good side of things is I love everything I bought on the internet and my house looks great 😀
Kay x

[eveParticipant]

Jet

having hyercalcaemia is bad and with the akf,Once you were put on drip with in 24 hours you would have seen a good improvement,drinking lots of water to flush kidneys out helps skin.Water seems the key to having good effect on skin and hair flushing excess drugs out of kidneys is important.The bone infusion helps with the pain relief.there is a piece on this web about it.Dex is positive in that it does help fight cancer and gives you energy its the coming off dex that gives you the lowers,I would agree with Kay.
It is just nice to have my partner a little bit normal for a few days on dex,even if he has his dex moments!!![trying to do to much]I have so many holes in my tongue ,biting it LOL,I find it difficult to walk away and think its a dex moment!! eve

[JetParticipant]

Hi Kay

Your post made me laugh out loud. Thanks! It reminded me of my first days on the drugs.

When I was first diagnosed, they immediately put me on Dex before any of the other drugs… I guess because I hadn't yet been told about or agreed to the trial.

Like you, I was totally hyper. Unlike you, I was in hospital without proper internet access and no real history of internet shopping, so I guess I was safe from an urge for wild spending. I did have that same sense of crazed creative ideas… My goodness, what I wasn't going to do… I would get a dog, possibly a puppy or even two… because I didn't have to work any more. I would extend my house and make a ceramic studio in my garden, where I would make ceramic art (something I've wanted to do for some time), I would never have to work again, I had all sorts of (now forgotten) creative ideas of what I would make… It was actually a very exciting few days.

I'm so glad you love everything you bought. Makes me wish I'd gone ahead and booked the architect and builders. LOL!

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