[DebsParticipant]

Hi everyone.

I just wondered if anyone else had had achey feelings after being on Revlimid? I'm on it as maintenance (5 months post SCT) therapy and on 25mg a day without the steroids or cyclo.

I am also getting over a cold and have low neutrophils so am not sure if it is something I should report to the hospital, or whether I just suffer colds far worse than I used to do!

Thanks as always.
Debs x

[HelenParticipant]

Hi Debs
Can't really help here as I've only just restarted the Revlimid again and had so many aches and pains at diagnosis I'm not sure what caused what symptoms. However I've been warned that colds and coughs will linger and often cause more trouble than previously as immune system has been so battered, I'm to contact the hosp or get my GP to prescribe antibiotics and to keep people with infection at arms length for the forseeable future. Hope you get over it soon.
Love Helen

[adamsp41Participant]

Hi Debs…I am 11 months post SCT and have had 5 cycles of Revlimid @ 25mg (maintenance programme)but have been taken off it for 5 weeks due to low Neutrophils and Platelets…my bloods have recovered somewhat and I have now been put back on 10mg per day…but I have also too had nothing but coughs and colds since SCT….the consultants don't seem too concerned (had a cough for 5 months!!!! had all the scans …x-rays etc all clear) about it but it sure takes a toll on my wellbeing…the advice from my clinic is get down to my GP to make sure there is no infection going on and antibiotics to be prescribed as a precautionary measure if deemed necessary and as Helen says keep anyone with with infections at an arms length…stay safe…Phil

[brochoParticipant]

Hi Debs if I remember right there were a few occasions when I felt achey on Rev, this was early in treatment and didnt last.As for colds I didnt have constant colds but I was constantly full of snot !! Classy! It actually drove me nutsand as there was nothing to be done about it I just got used to it Hope your aches dont last long love Bridget x

[MinParticipant]

I think the answer Debs is to talk to the hospital and better be safe than sorry, Im sorry your feeling so awful but its that darned time of year when everyone is run down but being run down after MM is something to take professional advise on.
I hope it clears up soon and your able to get on with your life
Love MIn

[DebsParticipant]

Thanks everyone. Had a terrible night and morning. My poor 5 & 7 year olds had to get up, dressed and make their own breakfast! They then played until their dad phoned from conference at midday, found out I was ill and came home to look after us all. Thank god we brought them up to be independent and thank god I married nick!! Felt like such a bad mum but couldn't do anything else. I'm a bit better now I'm taking paracetamol but will call the hospital if I'm still bad tomorrow- at least the kids will be back at school!
Debs x

[lorraineyParticipant]

Hi Debs,

I was on Revlimid 25mg for 18 months and I was achey continually. It got better as time went on but I didn't realise how bad I was until I stopped taking it in May this year. My Prof stopped it to give my body a break due to the aches and pains, just for a couple of months but my bloods have improved since being off it and my PP is still untraceable so i've stayed off it 😀

I hope you feel better tomorrow but I would mention it to your hospital team to be on the safe side. You have fab kids, they're a credit to you 🙂

Take care, love n hugs Lorraine xxx

[avantrompParticipant]

Hello Debs
I have now been taking Revlimid for almost 2 years but have not suffered any symptoms such as described by you. However you all (who have replied) seem to be taking such a high dose. I take 7.5mg and my paraprotein is still slowly going down. I wonder why there is such a difference in dose.
Annette

[JentayParticipant]

Hi Debs,
I have been taking Revlimid for 10 months and soon discovered that I couldn't tolerate the 25mg dose mainly because of the horrendous aches and muscle cramps. (It also made me extremely breathless and caused cardiac arrhythmia.) Once the dosage was lowered to 15mg my symptoms improved dramatically. It may be worth discussing taking a lower dose when you next see your consultant.

Good luck.
Jen.

[tomParticipant]

Hi Debs

Well as you know am 2 years post SCT and since SCT I have suffered more coughs bad chests and flu (ish) symptoms way too often But all X rays and ultra sounds are clear8-) so I think its a case of keeping an eye on it for ever more :-/ and yep it does wear you down :-S.

Good Luck to us all this winter and lets hope its a warm and fast one 😎
Roll on the sunshine lol

Love

Tom "Onwards and Upwards" xx

[mhnevillParticipant]

Hi Debs

Sorry you are finding the Revlimid so difficult. I do wonder if a lower dose would do as well. At least, would you be able to have a break from it to enjoy Christmas with the family?

So glad you have a wonderful family.

Love Mavis x

[Author]

Posts