[Anonymous]

Continuous use of Dex

Hi all

Hopefully this will go through okay. I haven’t posted anything since the website changed, as I just really struggle to use it for either posting, or reading anything that anyone else has posted.

They are looking into any possible fixes for me, but as yet, I don’t access the forum anymore.

Anyway, I’ve been on Velcade and Dex since last August, having completed 6 out of the 8 cycles, but am now about to change over to Revlimid.

I’m changing over, because the Velcade/Dex is no longer having any effect on my PP, in fact, it has now started to rise again, currently standing at 19, with it at it’s lowest of 9, roughly around last December.

The main reason for the post is to ask about other people’s relationship with Dex.

I recently stopped taking Dex for a couple of months, and just had Velcade, as I could no longer tolerate the side-effects, with the main ones for me, being the feeling of depression, being so very lethargic, and feeling very heavily stoned for most of the week.

Once I stopped taking Dex, all of the side-effects went away.

I started back on Dext around three weeks ago, but the side-effects are back, and are as bad as ever.

They are recommending that I take Dex along with the Revlimid, but I think I’m simply just going to have to take my chances, and take the Revlimid without Dex, as it is simply just too much to cope with.

I’ve tried googling the side-effects of Dex, when the person who is taking it, also likes to drink alcohol. The only things I can find, are very short comments, such as, ”avoid taking with alcohol”.

Has anyone else read anything that might go into any more detail?

I was just wondering if drinking alcohol whilst on Dex is the main reason that I’m really struggling to tolerate the Dex.

Hopefully my website access issues might get resolved one day soon, then I’ll be able to read everyone’s posts again.

Take care

Terry

[jeff605Participant]

Hi, Terry, just somehow deleted my reply, so here goes again. When I was taking Dex in 4 day slots, I had really bad days when I stopped taking Dex, the first day off very down and listless, the next day really black, then a slow recovery over a couple of days. When I took Dex, first day nothing really, then days 2/3 take on the world ! Day 4 usually recovering from doing too much on days 2/3 !! Terry, I stopped drinking fairly heavily when I started Chemo and went to zero alcohol, and still had the side effects from Dex, so perhaps you can rule that out. Hope this helps, my pp had stabilised at 9 and I’m on a wait and watch and have my consultant meeting on Thursday, so am a bit nervous waiting to see what has happened. Good Luck Terry and best wishes for the future, Jeff ( bad news is, not bothered about drinking, lost the taste for it !!!)

• This reply was modified 10 years, 10 months ago by  jeff605.

[SalParticipant]

Hi Terry,

I  don’t know if this helps, but my husband is having prednisolone with Velcade and cyclophosphamide as he had severe psychotic side-effects when he was on Dex last year (for spinal cord compression, before myeloma diagnosis). He is on his 3 rd cycle now and there have been no serious side-effects. I don’t know whether another steroid is an option for you, but it may be worth exploring.

Hope you can find a way round this soon.

Best wishes,

Sarah

[dickbParticipant]

What dosage of Dex are you having?

[eveParticipant]

You can vary the Dex ,take half dose or even taper off it slowly. There are other things you can take in the steroid department if it just Dex that does not agree with you,and I am surprised this has not been suggested by consultant !!!

As for alcohol !!!! Well need I say more,odd wine or beer yes,spirits,never.Eve

[rosieb123Participant]

My husband struggled with the side-effects of the dex and like Sarah’s husband was put on prednisolone. He takes 10 mg every day so doesn’t have the ups and downs that he experienced with the Dex and seems to cope with it much better. Perhaps you could ask your doctor if prednisolone could be an option. Best wishes Rosie

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