[DebsParticipant]

I don't know if this will help anyone, but when I started on CRD on the Myeloma XI trial, no-one recommended when I should take the Revlimid. So I took it in the morning with the Dex so that all my drugs were over and done with! Even my consultant didn't think it made you sleepy etc.

BUT, this last cycle, I have swapped to taking it in the evening (thanks Bridget for the advice!) and it has made a massive difference. Before that, I was waking restlessly the whole night long and rarely getting more than an hour or so on the trot. But, since I have swapped to taking it at 9pm, I regularly sleep through with no problems (apart from my children waking me!!). I am a different person!

Just thought I'd put it as a post in case anyone else is working out when to take the different drugs (p.s I take the dex by 8.30am in the morning)

Debs x

[GayeParticipant]

Dear Debbie – Thanks for your information on when to take Revlimid. I have taken Thalidomide, Revlimid (twice) and now Pomalidomide and every one has sent me into fatigue, sleeping for England etc and some more than others. I take them in the morning but they send me to sleep just the same – by 9pm I am ready for bed and sleep through until whenever. I usually find the sleepless nights comes when taking dex which I do once a week. So again it looks like people respond in different ways which always makes this disease so difficult to treat and tolerate sometimes.

Well Debbie I am pleased you are now getting the sleep you need – and your little helpers to get you up in the morning!! Lovely.

Much love, Gaye xx

Just remembered a very important ingredient of all three drugs. Thalidomide was originally marketed in the 60's as a sleeping aid not knowing the devastation it was going to cause to new babies born without limbs and other deformaties. Therefore it was meant to be a sleepy drug and so it is. Some countries stll haven't settled their claim with the manufacturers but Britain did so it seems its story still goes on after 50 years. No sure what this brings to your observations but it has certainly taken my mind back to an awful period in history.

PS I'm talking rubbish over Thalidomide as a sleeping aid – it was in fact an anti-sickness drug given to pregnant women. Shame I don't know my facts properly Debs!

[TinaParticipant]

Hi Debbie,

Interesting to see how the effects of Rev and Dex differ for each patient. Patrick used to take them both in the evening which did not affect his sleep, if he took them in the morning he would be sleepy all day. Hope you get on well with the Rev.

He has just completed the first cycle of Pomalidomide & has suffered very badly with painful night cramps and like you Gaye has been sleepy too.

Tina

[GayeParticipant]

Hello Tina – Thanks for the update of Patrick. Yes I too have had a return of the night cramps since Pomalidomide but so far not as bad as Patricks. I do wish him well Tina.

Good luck Debs with your Revlimid – will be thinking of you.

Love, Gaye xx

[DebsParticipant]

Hi there.

Sorry to hear that Patrick's having a bad time with cramps Tina….can't be pleasant at all…then again, what is with MM!! Hope yours aren't too bad either Gaye.

Think I'll be off the revlimid soon….I seem to have plateaud so it looks like in a couple of weeks I'll be randomised (within the Myeloma XI trial) for either velcade or a transplant in May. Scary! But actually I just want to know now 🙂

Love
Debs

[susannahParticipant]

Hi Debs

My husband Michael takes his Revlimid about 5pm, when he first started he used to take it in the mornings and he was asleep most of the day, hes still very tired but not quite as bad.

Hi Gaye funny you should mention the Thalidomide and the effect it had on unborn babies, we were in clinic a few months ago and this guy came in with only one arm, when we strted talking it appeared his mum had taken Thalidomide during pregnancy and he was born without his right arm and hand. He to had MM and was being treated by Thalidomide! He said he didnt have a problem with it.

Best Wishes
Sue

[KWilsonParticipant]

I always take mine in the morning with my Dex. Mind you, I'm sleepy even when I'm on my week 4 of the cycle where I don't take it at all.

xxxxxxxxxxx

[mikeyParticipant]

Hi Debs,
Thanks for the info, on when to take Revlimid, i am desperate for a good nights sleep, i take the dex about 8am in the morning, but the revlimid i vary anytime afternoon or early evening, as i take a half a sleeping tablet at night, so i will stop the sleeping tablet ,and take the Revlimid about 9pm, anything is worth a try, to sleep well at night .
Hugs to everyone .
Mike x.

[GayeParticipant]

Debs – when you first started this thread I said that I took my pomalidomide in the morning and everything was fine. Well on Saturday night I slept from 10pm to 10am and that was half my day gone. I then had a sleep in the afternoon and early to bed in the evening. I think it's fair to say I haven't quite got the balance right! So my doc has got me on evenings for the pomalidomide and doesn't know how I have managed to stay awake inbetween – well I haven't! I will let you know the outcome.

So no more smuggy Gaye – any help in keeping awake is gratefully received!

Love to you all, Gaye xx

[JetParticipant]

When I started treatment, I was given what feels like very informed advice from my specialist nurse…

Dex early and Revlimid late.

Dex makes me hyper and insomniac, even taking it early morning, but it's an interesting time… I get to think, read or catch up on emails and blog posting. Not having a job, kids or any other responsibilities, I don't mind. It's just part of the whole experience.

Revlimid makes me very tired, often needing a mid-afternoon/early evening nap and usually retiring to bed around 9pm. I sleep like a minor death – totally out… deep, deep sleep without dreams.

It's funny that we keep swapping our tales and keep reminding ourselves how individual this condition is… not to mention the huge variations of medication.

[mikeyParticipant]

You Lucky people, (sleep wise ), how i envy you , i take Dex at 8am, and now Revlimid at about 7pm, half a sleeping tablet at 10pm, and STILL only have about 3/4 hours sleep, i am exhausted most days, and cannot find the recipe,for sleep, so wish i could sleep for 6/8 hours one day, but at least the Rev/Dex is working well for me, i must never forget that..
Hugs and best wishes to all.
Mike.

[GayeParticipant]

Dear Jet = when it first hit me with thalidomide I fell into more or less complete comatose state and your description of it just sounds about right if not downright creepy! I actually remember thinking the next morning that I had slept in that position the whole night not moving once. It's happening again with pomalidomide? The laugh is having agreed to my docs'suggestion of taking it in the evening instead of morning, for the second month in a row it is not in stock and they can't get it to me from London until tomorrow.
I can't get angry – there's is no point.

Happy days my lovelies!

Love, Gaye

oo point. I shall leave it to em to so

[JetParticipant]

That's a bit rubbish, Gaye!

Funny, isn't it, that doctors concern themselves about patient compliance… taking tablets at the right times, right days, right amounts… understandable with the strange variations of when and how much we each take of all the different sweeties… Too bad the pharmacy compliance isn't better, eh?

On a similar note, I had a teeny weeny mini panic earlier today, thinking I'd missed taking my second dose of chemotherapy, but I was looking at the wrong date on my sheet and it was actually today that I needed to take them. Job done! LOL!

I suspect if I had missed the day, it wouldn't have been such a big deal. And I dare say, it won't make a huge difference to you, starting a day later than expected. I do wonder how they come up with the spacing of when to take the different pills.

I have a 4-week cycle, taking Revlimid every other day for 3 weeks, although this may increase to daily once my kidney function improves. I take Dexamethasone on days 1-4 and 12-15 and chemotherapy on Day 1 and Day 8. I then get a week off the heavy drugs. Phew!!!!

[adminKeymaster]

Thanks, this is very much what I do with thalidomide and dex …

[GayeParticipant]

At last my month's supply of pomalidomide arrived on Friday evening round 8pm delivered by a rather lovely young man so I can now start cycle 3 tomorrow evening. At last. All that it takes to get our medication but at least it is here!

Love to you all. Gaye xx

[Author]

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