[DaiCroParticipant]

Or Dexavicious… we certainly seem to have a love/hate relationship with this powerful but ambiguous drug. 😐

I have been having a few problems over the past three weeks since starting my Rev & Dex regime and I am trying to work out what is causing what. We know the usual suspect side-effects… bloatedness, attitudinal swings, feeling flushed etcetera… but I was wondering if there are any side-effects that you have had either attributed directly to Dex or you have had deep suspicions of its influence.

I get a tingling around my mouth and lips, I have found passing water very slow (even when drinking plenty – but then it comes normal for a while???) I have had bouts of confusion ete., etc – all of which, my specialist nurse has said, could well be down to Dex.

Over to you for Dexdishes old and new.:-D :-/

Dai.

[LyndaParticipant]

Hi Dai

Hubbie Pete has the tingling around mouth and lips since he started the Dex. No problems with passing water but does have hiccups most Tuesdays which lasted several hours. As you can imagine that was very tiring but he has found a great exercise which seems to now stop them. If needed I will gladly pass on to you. Also on Dex Day his nose suddenly starts running as if he has a cold. This carries on for a couple of hours and then as suddenly stops. Dex certainly seems to have some strange side effects!!!
Even stranger Pete had been on 20mgs once every Tuesday but it was then increased to 40mg weekly. We expected for the more familiar symptoms to be far worse like the lack of sleep,and the high when I pull him down from the ceiling but in fact he has been better on the higher dose. I am certainly not complaining but this drug has a mind of its own!!
I do hope you manage to get these symptoms sorted Dai and that things will settle down. Good luck with the treatment.
Kind regards
Lyn

[tomParticipant]

Hi Dai

Well you know am sorry to read about your problem 🙁

Now for me ? When I was on CDT I was having Dex 10 in morning and another 10 tabs about 11 am i think on days 1 to 4 and 15 to 18 on a 28 day cycle. side effects ? I got a very bloated and fat face it was near the shape of a football when I looked in mirror :-0 and I felt like my skin had shrunk as it felt real tight on my body felt like it was like a jumper two sizes too small he he.

And as for passing water yes mine did go to a dribble some times and very painfull thats when i knew i had to up my fluid intake.

Hope its all soon sorted Dai.

Tom "Onwards and Upwards" x

[HelenParticipant]

Hi Dai
I could never work out what was doing what when I was on the rev/dex/cyclophos combo but now I'm on revlimid only, I have the running nose, especially at meal times, tingling mouth and trembling fingers, sudden fatigue and occasional headaches i think when I've done too much.
Being a girlie I can't comment about the hesitancy! Different physiology! I still get hot flushes though but being a girlie I put that down to menopause again.
this probably doesn't help:-|
Love Helen

[EvaParticipant]

Dear Dai,
I've been on dex for over eight and a half months since a bad relapse. I added weight, especially in the face, stomach area and on the top of my back so I look a bit hunched. I've also experienced the lip tingling, though I've been on Thalidomide at the same time so I'm not sure what's causing what.

I've felt a bit restless on the dex, occasionally bordering on anxious. Coming off the dex in each cycle has been a real problem. The first day off, I've been a bit tired, but ok. By the second day I've always slowed down significantly. The problem has been compounded as the days go by, until I've been unable to walk more than a few metres, and stairs have been practically impossible. I think I'm a similar age to you and used to be very fit. There were some days when I just had to retire to bed in disgust as I couldn't do anything. After about six days on no dex in the cycle, there'd be a magic moment in the evening when my adrenal gland would start working more efficiently again and I'd be able to do a bit more. Of course, it would be almost time to take my next dose of dex….

I had one really awful episode with the dex after being on it for about four or five months. My husband had to go away to Edinburgh on the train – we live in the Highlands – and I decided to go with him since I was afraid to be on my own as I felt rather strange. When the train pulled in I had to climb onto it as it's a very low platform ( we live in a railway station). I was in a crouching position just inside the train and suddenly realised I couldn't get up. My body just wouldn't do it. The train was about to leave and my husband was behind me with a suitcase and bags. I ended up crawling to a seat on all fours and then got helped up. Over the next few days I had the same problem each time I tried to get into a cab, and I couldn't even get up off the loo on my own. I could only walk a few steps very laboriously. I found out I was suffering from dex induced myopathy – a loss of muscle control. I contacted the Prof in London who was treating me since my relapse and he told me to stop taking dex immediately. I had a dex holiday for about ten days and then restarted at a lower dose. The myopathy went away but once I restarted I still had the problems with dex withdrawal. I've been taken off the dex about eight weeks ago because I was responsive to the treatment and now I'm just on the Thal. I'm still very fatigued, struggling with the weight I've added, and have chemo brain, but it's easier without the dex. Of course, as soon as my numbers go in the wrong direction I expect I'll be back on the dex.

Dai, I wish you the best with your treatment and hope the dex side effects are manageable.

Eva

[brochoParticipant]

Hi Dai the lovely Dex a necessary evil we love to hate!! I have had the mouth tingling too , not too troublesome though just a minor annoyance . I also have trouble passing water at times which I found puzzling but I think you have hit the nail on the head it is likely to be Dex I just hadnt thought of it before Both these side-effects are just a little annoying but I have never mentioned it in clinic , perhaps I will next time to see if the docs are aware of them . Eva you must have been terrified that sounds absolutely awful The benefits of Dex are what makes me put up with it though as several times it has reduced tumours considerably so I suppose I will carry on taking and have a quiet grumble from time to time ! love Bridget x

[andygParticipant]

Hi Dai
I also get tingling round my mouth and lips. I wasn't sure if it was dex or thalidomide that caused it. However dex got the blame for my fat face!

Andy

[DaiCroParticipant]

Thank you all for reporting in. I am curious about what drug causes what… but moreover I want to work with my specialist nurse to try and find remedies for those side-effects that cause misery (rather than treatment threatening withdrawal).:-(

I suppose I want to find out the cause and effects of Dex because I hope to be on it for a long time and if there are any measures or remedies that dilute or delete some of the 'nasties' then I feel honour bound to do so.;-)

Regards to all:-)

Dai.

[EvaParticipant]

Hi Dai – this is Eva again. I've just remembered some other side effects with dex. I've had hair loss and absolute confirmation that it was the dex because when I stopped being on it I got new hair growth even though I was on other meds. I don't think hair loss happens to everyone.

Another side effect is that muscles atrophy or diminish and that's different from the myopathy I described in my previous post.

It's also possible to get something called hypothyroidism, where your thyroid gland isn't working optimally and you need to take meds to correct it. The test for it can come with an ordinary blood test if you ask for thyroid function to be assessed. The parameter involved is called TSH and when the results come in you can check whether your TSH levels are in the normal range. I had hypothyroidism while I was on the dex and I felt much better when I was prescribed 'Levothyroxine.' After I was taken off the dex it took a few weeks and then my throid levels returned to normal.I think these problems are more likely to occur after prolonged use of dex.

Best,
Eva

[CAZ1Participant]

Hi Guys
The trouble I have had with Dex has been the weight gain,especially around the face and upper abdomen (and it's not all chocolate related). Luckily that is going down now I have finished my CTD but the muscle atrophy is a problem especially as I am still trying to get over my broken leg from 10 months ago and need to be exercising before my planned transplant, and also need to be on the way to loosing some of the weight I had gained which might make it easier.
The worst aspect of the Dex was the 'dump' days 2 days after stopping the tablets-they were renamed 'duvet days'. Complete lack of energy after being'high'on the Dex—-mind you I still have those days when everything is too much effort.
It just shows that we all react differently to these drugs we have to take–!
Carol

[DaiCroParticipant]

Carol, thank you… I only take Dex once a week, so I have to make it stretch.:-D I am keeping notes of its effects during the week to see if any patterns develop. Tuesday is my nominated 'DEXDAY TM' so I imagine that Tues/Weds/Thurs will see the strongest effects with a tapering off towards Monday… but I will not be surprised in the least if my notes show a completely different pattern.:-)

Eva, thank you for your input, I truly appreciate how much work you put into your reply and I am sure that the information will become very useful as I move down the line… again, thank you.:-)

Regards to all this fine and sunny 'DEXDAY TM'.:-D

Dai.

[OutdoorsPaulParticipant]

Dai
I am currently on the PADs route and taking Dex.Week 1 of my cycle i take Dex over 4 days,which is 40mg per day.
I get the hiccups,upper body weight stomach/chest/neck.I also get some hot sweats at night and my pillow can be wet.So dehydration could be an issue but I drink between 2-3 pints of fluids a day.
I do feel "wired" when on Dex and I think it does effect the thought process I.E feeling "mentally foggy".
Paul

[DaiCroParticipant]

Hi Paul,

When I had Dex as part of my frontline CDT I was wired – during the Velcade adventure I felt foggy… early indications (Week 4 Cycle 1) of Rev & Dex seem to be pointing to wired – I'm writing an album's worth of songs for February/March (9 of 14 completed) as well as getting on with my 2nd novel. My problem is trying to get some discipline into the mix.

I attended my first Nottingham Support Group yesterday and met someone who is on Cycle 20 of Rev & Dex… he is off on a 6 week sailing adventure next month!!! I wish!:-) :-0 😎

Dai.

[EvaParticipant]

Dear Dai,
I must apologise for one thing – the hypothyroidism was from extended use of Thalidomide, not dex. Let's put it down to chemo brain…
Eva

[DaiCroParticipant]

Hi Eva

I am putting so much down to 'Chemo Brain' these days… Tom tries to convince me its just old age but I like to have an excuse. Thanks for the info… its been noted and stored away safely for as or when needed.:-)

Regards

Dai.

[Author]

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