[mapesumaParticipant]

Can anyone help with dex problems. My husband is taking liquid rather than the tablets which make him retch and feel sick, sometimes actual sick. Looking for things to take away the bitter aftertaste which also makes him feel sick but not as bad as all those little tablets. Each dose is 100ml!
sue

[patsyannParticipant]

Hi Sue

My husband has had to take varying doses of Dex over the years and, like yours, struggled with the initial tablets which had to be swallowed individually. It was a huge problem for him and worrying about it just made things worse. He found that taking each in a teaspoonful of yoghurt (not the live stuff!) was the only thing that worked. Since then he’s always had the soluble tablets which are dissolved in a small glass of water, which turns orange. Followed usually by coffee or something else to take the taste away. We haven’t encountered a liquid version yet. Don’t hesitate to ask the haematology nurses for any suggestions on alternatives, or ask the nurses on the helpline here. They’re always very good.

Pat

[mapesumaParticipant]

Hi Pat, Thank you for you reply.

We are in the UK. I am wondering where you are based as I have not come across soluble tablets. Do you know the manufacturer. I think they will suit Paul much better if i can source them as the liquid he has is full of sweeteners and tastes sickly sweet with a really bitter after taste which lasts most of the day.

Paul does not drink coffee or anything containing caffeine on the day he takes the dex or in the afternoon or evening of the following day. The caffeine reacts with the steroid, enhancing the stimulus effect and he cannot sleep. If he avoids the coffee he sleeps almost normally.

He has found the best thing to take the bitter taste away is Sainsburys chilled apple and pear juice. Next best is pure apple juice – suggested by the hospital pharmacy.

Sue

[patsyannParticipant]

Hi Sue

We’re in Scotland so it shouldn’t be difficult to find the soluble tablets. The ones David had most recently were Glensoludex 2mg soluble tablets. Manufacturer is Glenmark Pharmaceuticals Europe Ltd. That’s what our hospital pharmacy supplied. He had to take 10 of those daily. I just asked him and he says there’s a bit of an after-taste but nothing much and a few sips of plain water get rid of it. He really struggled the first time he had Dex as he had to take about 20 of the solid tablets at a time and found it really hard to swallow them without retching. Hope that helps.

Pat

[mapesumaParticipant]

Hi Pat,

They sound brilliant. We live in Wales. I will ask if our pharmacy can get them.

Paul is taking a 40mg dose. The 20 tablets he couldn’t manage. The liquid he gets is only 2mg per 10ml spoonful. It is really expensive and pharmacy is not happy about giving it out – every month the note seems to get lost and they give tablets which I have to get changed.

Thank you so much for helping.

Sue

[patsyannParticipant]

Hi Sue,

I hope you manage to persuade the pharmacy to give you the soluble ones. Happy to have helped if you succeed. This illness is difficult enough to deal with without having to cope with avoidable problems with a basic part of the treatment. Let us know how you get on.

Pat

[mapesumaParticipant]

Hi Pat,

You are right, it is difficult. Once it was diagnosed and they got the back pain sorted out, most of Paul’s problems have come from the treatment.

I hope David is doing well with it and that you are OK too.

Wishing you the best possible Christmas,

Sue x

[tmcintyreParticipant]

Hi
My husband has soluble Dex too, Glensoludex. The hospital pharmacy just switched him to it. Apparently adding squash to it makes it taste nicer.
Teresa

[patsyannParticipant]

Thank you, Sue

David’s not too well at the moment so we’re hoping the Daratumumab he’s just started on will improve our chances of a good Christmas.
All the best to you and Paul.

Pat

[mapesumaParticipant]

Hi Teresa,
Thank you. Sounds like our pharmacy is a little out of it. I will ask them about glensoludex next time i go in.
Sue

[mapesumaParticipant]

Hi Pat,

Sorry to hear that David is poorly just now. I have read that the first dose of Daratumabab is the worst, so if he has tolerated it he should find the rest easier. I hope it works well for him.

Paul is currently on Pomalidamide and dex as his third line. Consultant is thinking of daratumabab for 4th, but says he has hopes that the pom will be good for the time being. Christmas has fallen in his week off so we have been lucky.

Hope all goes well for you and David, and that you have a lovely Christmas.

Sue x

[patsyannParticipant]

Hi Sue

Second dose today. If all goes well he should get home tomorrow.

Hope you have a lovely Christmas too.

Pat

[mapesumaParticipant]

Dear Pat,

How did David get on? I do hope it went easily for him, and that he is home with you now and recovers well from it.

We are recovering from colds/ chest infections. Paul’s treatment has been delayed for a week due to them, so he has another test on Friday.

Hope you and all your family have a nice Christmas.

Sue

[patsyannParticipant]

Hi Sue

The treatment itself seems to have been fairly problem-free, with no adverse reactions. He’s home and the next treatment is scheduled for the Day Unit next Friday so hopefully that will go according to plan. He had to get more platelets as his blood counts are not great and he’s very tired and quite weak, which is more apparent now he’s home. We just have to hope this works, and works quickly, for him.

I’m sorry you’re having to deal with colds and chest infections – the very last thing you need when Paul’s on treatment. Hope you both recover soon and have a good Christmas!

Pat

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