[meganjaneParticipant]

Hi David,

Sorry to hear that you have been pulled off the Velcade but it may be for the best (?) if your response has plateaued and there are signs of neuropathy :-/ Hopefully your Doctor will come up with a new plan that will decrease the risk of neuropathy.

My husband Phil also has neuropathy from Velcade, most people find it decreases two to three months after they stop the treatment so hopefully that will be the case for you. There are three drugs that can help: Amitriptyline, Gabapentin or Pregablin. Phil didn't find that the amitriptyline or Pregablin helped but others have had more success. Vitamin B complex may also help, Phil is taking that now.

Phil has been able to continue walking although he has to watch where he is going due to the spongy feet syndrome. Phil also finds it difficult to get to sleep some nights due to a burning sensation but he finds wearing socks to bed helps a little bit.

I hope you had a lovely day at the beach today and that the neuropathy will be a short lived side effect.

Megan

[PerkymiteParticipant]

Hi Megan, thanks for the reply. I seem to have the same as Phil.

[i]Most people find it decreases two to three months after they stop the treatment[/i] Ouch :-S I am going to go over to the hospital day centre today and see what they can give me. I have got to get something to help here. Gabapentin worked for Phil did you say? Vitamin B Complex is that something you buy in a health/herbal shop?

I had a nice day at the beach and we then met my daughter and her family. They wanted me to stay overnight but I just had to come home. My Granddaughter even offered me a bed in her new flat bless her, but when you get up in the night, like now, and just do not know what to do with yourself it is best to be at home I think

Thanks for the help.

Kindest regards – vasbyte.

David

p.s. going to make a hot milky drink and try going back to sleep.

[meganjaneParticipant]

Hi David,

Phil never tried the Gabapentin as the other two didn't work so it was thought unlikely it would 🙁 Hopefully you have better luck!! The last time we saw the Prof in June was when he told us the two to three months stat but then he realised it was eight months for Phil so he added, for some people it takes longer….

We bought the vitamin B complex at Tesco but you can get it at any supermarket in the vitamin aise, the bottle said it also helps with energy levels so we thought it couldn't hurt!

There is a good leaflet on the site for neuropathy:

http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/peripheral-neuropathy/

It has this to say about vitamins:

Vitamin supplements
Supplements such as vitamin B complex, folic acid, magnesium and alpha-lipoic acid are sometimes
considered helpful in managing the symptoms of neuropathy.
As there is no firm research to support the use of these therapies and supplements, it is essential to
consult a qualified practitioner. You should also talk to your doctor to ensure that the treatments are safe to
use and that they do not interact with any of your other treatments.

I hope you have better luck than Phil with this nasty side effect, keep us posted!

Megan

[PerkymiteParticipant]

Yes, I have always been a great believer in "asking first". In my situation I tend to check everything medically related with my Doc before I stick it in my mouth 😀 :-D. I do not want to complicate things any further.

I did pull on some socks last night and it did seem to help. I used to do this when my feet got very cold but I never thought about it in a heat wave 😎 But I have to say it did seem to help and I slept from 3:30ish to 6 this morning.

Kindest regards – vasbyte

David

[Author]

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