[brochoParticipant]

Hi everyone put your hands over your ears this is a major dex rant!! Today has been awful from the moment I woke Every part of me hurts , right down to my hair Every part of me feels so tender I could scream and I feel as if I am about to explode out of my skin. To top it all my taste buds are completely up the wall and the inside of my mouth feels like the back end of a donkey ( no idea why I used that example!!) All day I have been pondering as to whether dex or revlimid is the culprit but as I have had similiar problems when taking dex in pulse doses before I assume it is responsible The hamster face hasnt really improved my bad temper either. I do accept dex as a necessary evil but oh how I resent its impact on my life.An article on steroids the other day posed the question" If your doctor warned you that taking steroids alters your appearance would you refuse them?"– If I am honest I think it is possible I may have refused that first dose , having said that I would have seen sense in the end Its very hard for our families and friends to understand the impact dex has in so many ways so a little rant on here helps me get it off my chest Thankyou for being here love Bridget aka The Incredible Hulk xx

[jmsmythParticipant]

Hi Bridget

I am so sorry to read that you are having such a rough time. The only thing I know about Dex is what I read here – and it seems to be really unpleasant. Your family and friends know the real you, so will understand that it is the "dreaded Dex". You listen to all our rants, so carry on as much as you like.

Hope you start to feel better soon and back to your old self.

Love Jean xx

[GillParticipant]

Dear Incredible Hulk AKA Bridget,

I am sorry you feel so wretched. Stephen is on Dex at the moment. He looks like a chipmunk, has lost his taste and has swapped his personality for that of Atilla the Hun.

It got so bad over the weekend that I lost it and shouted "I don't care if it is the Dex talking, you talking or the evil one from the Excorsist STOP SCREAMING AT ME". He then said "OK no need to shout"!!!! I explained in a very shouty voice that I wanted to shout as I was so cross.

I felt aweful afterwards but peace is at home again for the moment So to Qote Tom Onwards and Upwards or OAU

Love and good luck from Gillxx

[SharonGParticipant]

Hi Bridget
I soooo know how you feel! I am also back on 40mgs dex and don't feel i had quite recovered from last months blast i received! I should have been trying on my bridesmaid dress this weekend…….. I will look awful by the time the wedding arrives in june! They should have asked my daughter instead!
Have as much as a moan about this blasted dex as you like, we all have a good idea how you feel. But if the pain gets too much do get it checked out,
thinking of you
love Sharon x

[KeithH17Participant]

As a fellow Dex sufferer I fully understand how you feel.
I've been like a Volcano on the verge of eruption for the past week now.
The least bit thing annoys me and that's the total opposite of my normal state of mind.
But I would get the pain checked out Bridget asap which should help calm you down somewhat…you little Hellraiser you!

Bye for now…Keith x

[zasrsParticipant]

Dear Bridget

I am so sorry, Dex really does needs locking up and never letting out till he/she learns how to behave!!:-(

Keep going keep, raising h…l amd hopefully you and yours will come out the other side.:-D

much love

sarah xx

[tinkerbellParticipant]

Hi Bridget,
This is the final dex day for me in this pulse and I know how you feel it is such a necessary evil. My face had changed colour within two hours of taking the first dose and I have now resolved to having a round face and the fact that my bridesmaid dress in April will fit but am disappointed that it is a size bigger than normal but I am happy that I am going to be in Rome to see my wee sister get married. I've spent all day in work and as it's half term had kids with me (joys of owning your own buisness) and my laptop got a virus and after an hour I was really ready to chop Sam's head off as he went on and on and we needed to wait for his Dad to finish with the patients. We splashed out on the M&S valentines meal as I knew I'd be knackered after a full busy day and I have to say everyone else enjoyed the spread and I was trying to stuff it down as my taste buds have gone. The only plus side of dex for me is that it helps loads with the residual inflammation from my femur nailing operations and my mobility is better on dex days. Thinking about you and noticing that even on dex days your still here for everyone else who's having a tough day – you are amazing! Take care Pamela xx

[MinParticipant]

Dear Bridget,
Sorry your feeling like sh***. Hope its not the dex, Peter only takes it at the start of the new course of Revlamid. Are you taking it again? or is it just a build up off last week?
Whatever, your allowed to sound off if its making you feel so awful. I know that first week was bad for Peter and only now is he begining to feel like he is getting to grips with the side effects. I suspect its the Revlamid doing its stuff, as he has had much bigger doses of Dex much more frequently than with Revlamid.
If it gets too bad you can get a smaller dose( maybe that was why the Dr gave him a smaller dose of dex at the outset knowing it had some bad settling in side effects.) Next packet he gets he will be getting a bigger dose of dex.
Why not ring your nurse and tell her how your feeling, I have no doubt she will ask how you know what the inside of a donkey tastes like!
Have a bar of nasty chocolate it is such a pick you up. Hope your feeling better soon
luv Min

[DebsParticipant]

Oh Bridget,

So sorry you're feeling so rubbish. It can be awful can't it. I have my sister in laws 30th on saturday….evening wear only…and I'm going to look like a hamster faced heffalump!!!

I didn't realise it was a common side effect the feeling of bruising, but I get that every now and again (can't decide whether it's dex, rev or cyclophos!) and feel like if someone touches me I'll go black and blue.

And the taste thing is just horrid isn't it….I can't stop eating from it. I don't think I've put on weight from anything other than my lack of willpower at a point where I just want to lose the taste of CRD no matter what the consequence (until I see the consequence and then just want to lose the weight!!)

keep strong though, those days will pass.

Debs x

[brochoParticipant]

Good Morning everyone thankyou for your support , it always makes me see the better side of things. I am going to ask why there seems to be a delay in my finishing the dex pulse last week and feeling so rubbish 4 or 5 days later. Debs my money is on dex for the crappy taste thing , it always does it to me!! Pam I really admire how you are so incredibly busy and with a young family , myeloma is certainly no match for you!!! Sharon and Pam I am looking forward to seeing those wedding pics you will both look beautiful and the day will be so special you will feel it too. How romantic a wedding in Rome your sister is a lucky girl Pam . Min I am going to be on a smaller dose of dex hopefully at some point so I will discuss this at clinic . I couldnt find a nasty bar of chocolate Min , because I had eaten it all !! Does anybody else find dex affects the weirdness of your dreams?? Last night I dreamt all of the us were on a protest march , anti- govt something?, Gaye was our leader , Dai was leading us in folk songs We were a pretty fierce force to be reckoned with . shame I woke up before I found out why we were protesting have a nice day , no sun here today , love Bridget x

[DebsParticipant]

hi Bridget
Just to give another idea Im starting to think it could be the coproximol….took it again twice test and the horrid taste came back this afternoon. Got appt today to pick up cycle 4 drugs so will ask the question!
Debs x

[brochoParticipant]

Hi Debs be interesting to hear what your docs say Have you noticed a need for saltier foods? I realised last night why peanut butter wasnt right , couldnt taste the salt . Have you mentioned the bruising feeling to your doc? I dont think it is that common I mentioned it to my consultant once and she looked at me as if I was nuts!! Just had a thought even Hester Bloomenthal would be hard pushed to cook us a meal at present !!Be a good challenge for him Hope your day is a good one love Bridget x

[BADGERParticipant]

Hello Bridget

I did laugh I could imagine Dai conducting us in a chior I would be the one he would tap on the head a say mime it. Dex Dex Dex we should write a song perhaps Dai could, I know what you mean about fat face I am only on a small dose but still have a fat face! hope you feel much better soon have you had any relief from your RT treatment

Love Jo 😛

[brochoParticipant]

Hi Jo that image set me off with a fit of the giggles!! Perhaps we could record the dex song ? Then they would have to interview us all on breakfast tv, trouble is none of us would have the patience if it was a dex day !!! Haha Radiotherapy certainly seems to have done the trick for me , the pain does come and go but for only a few hours at a time How are you .do you have clinic this week?Take care love Bridget x

[kaychappersParticipant]

Hi Bridget
I have started my CTD now. On the second week. I have had the sandpaper mouth but been lucky with, up till now, no other effects. However, today, I have a rash which the nurse has said is due to the gout tablet and has taken me off of it. But I was interested to hear about you saying how tender you feel. My back feels like it is going to break today. I finished Dex last Thursday so I have not put it down to that. I just thought it was bad posture!!! Could it be the dreaded Dex? I know they were pretty powerful when I came off them. Like being hit with a steam roller.

Kay

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