[jeapal23Participant]

since Mike stopped decade about eight weeks ago he is having terrible pains in hu s feet that are getting worse. he take morphine gabapentin b6 and b12 and he still has pain. anyone got any other s suggestions

[meganjaneParticipant]

Hi Jean,

Peripheral neuropathy is a nightmare, isn't it? My husband Phil had six cycles of velcade that has resulted in feet that are either numb or burning. Phil tried pregablin for a bit and although it did not work for him you may want to check with your doctor as I believe this is the next drug up from gabapentin.

Phil also finds wearing socks to bed helps a tiny bit.

Megan

[jeapal23Participant]

thanks for the response. Mike Is not on gabapentin he us on pregablin already on the highest dosage. he is spending most of his time in bed asleep. I'm going to get t he doctors to check that there is nothing else wrong with him.

[jeapal23Participant]

I took mike to the doctors yesterday he was in tears with the pain they have put him on oxycodone. a slow releasing pain killer. he seems ti be a bit better today

[denisgriffinParticipant]

Hi Jean,

I have Neuropathy, from four years on Thalidomide, I'm not sure it's as severe as Mike's. Neuropathy is the curse from many myeloma treatments. Here is my take on trying to deal with it:

I take lyric (Pregabilin) 2 x 75 mg per, day which helps. it's always worse overnight, so like Phil I wear socks in bed and occasionally use a hot water bottle. Day time, when possible, I find it best to keep on the move. Cushioned socks and trainers are the most comfortable foot wear outside the house. I've been off treatment for a year, so I guess its permanent, very much on the upside I am in my fifth year of remission.

I hope this helps. Would be glad to hear from anyone else on this matter.

Denis

[DebsParticipant]

I think I was put on amotryptalin (pls excuse spelling!) to go with the gabapentin and oromorph!!

Eventually for me it died down – it just took a bit of time. Funnily I think revlamid kicks it off for me!

Good luck…I hated the foot pain as much as the rest of it all!
Debs

[Anonymous]

hi
henry is on amiltriptalyne and it helps a bit but he still has painful feet and numbness in his fingers. he has difficulty with buttons and opening carrier bags. its from the thalidomide.

he is also now on oral bisphosfonate as his veins have packed up for iv pamidronate.
his strange rash is back but only on one leg.
apart from that we are all good at the moment

love sarah x

[SIMSParticipant]

Hi , Itsmy husband with MM, PLEASE CAN I ASK ARE YOU STILL ON THE DRUGS WHICH KEEP THE PAIN FROM YOUR HANDS AND FEET? tHANKS

[DebsParticipant]

Hi there.

No my pain pretty much disappeared eventually. I still get slightly 'spongy' feet from my maintenance therapy (revlimid surprisingly – not common to get PN from that!) but I don't take anything for it as it is manageable.

Hope your husband gets some relief soon – it really is horrid to be in pain 🙁

Thanks
Debs

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