[RozParticipant]

Hi
Michael my husband who is in hospital suffers with this. He started it when he was on Velcade, now on Revlimid and he still suffers with it. At first it was like pins and needles in his hands and feet. Then he lost feeling, now his hands feel right big. He drops things alot, finds it hard to use his mobile even to answer and I don't know how to reassure him. Does any one know how long this lasts.
Roz

[JdaxParticipant]

Hi Roz, my first post on the Beta site !.
I developed PN too after Velcade treatment. There's no easy answer to how long it lasts or the severity.
In my case, at it's worst, life would hardly be worth living if it had stayed the same (sorry to be so melodramatic).
6 months later it's improved enormouusly – but – it's still a problem. I have to plan days out for example. If I have to walk for more than about 40 minutes it gets steadily worse.
I was fortunate enough to see a Pain specialist who put me on Gabapentin and Nortriptylene which turned the corner for me.
I was at the London Infoday and it was surprising just how many MM patients have this. There was lady who was practically in tears with the pain. It still surprises me that there are aids not prescribed on the NHS like Acetyl L-Carnitine and Alpha Lipoic acid. I was told about these by the Clinical Nurse. I also found the Helpline here very useful.

Jim

[RozParticipant]

I'm glad things have improved for you. With Michael being in bed most of the time I believe things are pretty bad for him. When they get him up and walking around his room they don't seem to realise how much he hurts. I'll see how things go with him and tell him how lots of others get it with the treatment.
Thanks for letting me know
Roz

[MinParticipant]

Hi Jim
Peter starts on velcade on Tuesday next week. His consultant warned him about PN and said to let them know if he has any tingling at all and they will lower the dose and or stop the treatment. How long ago were you on it? What is Acetyl L-Carnitine and Alpha Lipoic acid. do you take it when you have pn or to prevent it?
Anyone got any advice to prevent pn? After only 5months remisssion following cdt really want to ensure velcade works.
Min

[GayeParticipant]

Dear Min – I also have PN after Velcade but as to preventing it, I am not sure if there is anything out there that could help. However, I have had Velcade twice and I have noticed a pattern as to when mine started.

On my clinical trial 6 years ago I had 4 cycles of Velcade at full strength and had no PN at all. On my second course this year I noticed some numbness in my toes after the 4th cycle. Foolishly I didn't report it straight away and when it became obvious I had PN they reduced the dose to once/week. By then the damage was done and I eventually came off it. The trouble is everyone responds differently so I can't say this will happen for Peter. I would just say that the moment he feels any sort of odd sensation in the feet/hands to report it before it takes hold.

Mine is slowly recovering although I don't take anything for it. It doesn't hurt to walk but I know for many that it does. I can imagine how much you both want this Velcade to work and I send my love and good wishes for the time ahead.

Love, Gaye xx

[RozParticipant]

Hi
Michael got his velcade lowered because of PN plus other reasons but when he told em about his hands and feet, they just said it is part of the treatment. The Revlimid is doing the same. I don't think there is anything to prevent it I just think you have to lat your consultants know. I've read somewhere that on some people it does not go away. Every one is different and each treatment works differently on each person.
Also Min no-one knows if velcade will work, it never worked for Michael but you may be one of the lucky ones.

All the best to you when the time is right.
Love Roz

[NettieParticipant]

Hi
I first experienced PN during maintenance treatment with Thalidomide following my first SCT. I ignored the first effects which were just a slight tingling in my feet, especially my toes, but when it started to affect my hands I asked to be taken of the Thalidomide and my Haematologist agreed. The tingling in my toes never completely went away but my hands were no longer affected.
Prior to my second SCT I went on the Velcade/Dex/doxorubicin course of treatment and the tingling started up again and my feet became quite painful, my toes were especially stiff and uncomfortable. This gradually subsided and now ten months post SCT has noticeably improved but has not completely gone away. The most noticeable improvement recently has been since I was prescribed Gabapentin, 300mg three times daily, to cope with the pain of shingles. This drug is used for "long lasting pain caused by damage to the nerves" as well as for epilepsy and has made a huge difference. I was able to stop taking the high dose co-codamol immediately so I will ask if I can stay on it to stop the PN. I don't know whether it would prevent PN or can only be used once it is present but it may be worth asking your doctors opinion.
Best wishes,
Love Nettie

[JdaxParticipant]

I had the PN pretty bad when I had an SCT in April. But in my case the nurses were aware of it. I spent a lot more time laying on the bed because of it and it was definately painful walking around !.

Because it was my feet that were painful, I found it 'comforting' (relatively) to lay on my front with my feet resting on a couple of cushions.

I do hope Michael improves

Jim

[JdaxParticipant]

I was told by the Clinical nurse that Acetyl… and Alpha… are prescribed as a matter of course in the US whenever someone is put on Velcade treatment.

It's not available on the NHS so I bought my own !. I didn't find this out till after I'd developed PN so I don't know how much it woulld have helped if I'd taken it from the start.

Jim

[DaiCroParticipant]

Hi Roz,

The bain of my life is my PN – I'm a martyr to the tingles.:-/

Mine is definitely worse when I'm tired or when I feel off in some way – a bit like my Tinnitus. If I didn't have PN I reckon I would mark myself 80% mobile, with it about 65%… but given the alternatives I'll take it.

I'm sorry that Michael has PN on top of everything else he is having to endure and I am fortunate that my hands have hardly suffered at all (or at least hardly worth mentioning). Please pass on my best wishes when you get to see him next; I've still got everything crossed that the operation on his arm will be the kickstart back to reasonable health.

Much love
Dai.

[EvaParticipant]

Dear JDAX,
Any idea what dose of acetyl c. and alpha lipoic acid might be appropriate?
Eva

[JdaxParticipant]

Hi Min / Eva,

Re the dose of Acetyl L Carnitine and Alpha Lipoic Acid… – here's a cut down version of the information I got. I ended up getting my supply of alpha and acetyl from http://www.discount-supplements.co.uk – costs approx £34 for 90 tabs each of 200mg Alpha and 500mg Acetyl. I take 1 of each twice daily. There were other things on there including Cocoa Butter. I'm also on Gabapentin 600mg 3 times a day and Nortriptylene 40mg onnce a day.

Dana ?Farber Cancer Institute. The Jerome Lipper Multiple Myeloma Center.
Institutional approach for Neuropathy with Multiple Myeloma patients.
[i]Always consult with your physician before taking any supplements or medications[/i]
VITAMINS ? Always take with food
Hi ?Dose Multi-B Complex Vitamin
With B1, B6, B12, folic acid and other B-vitamins Folic acid should be 1 to 2 mg
[b]Vitamin E[/b] 400 IU daily
Fish Oils ? Omega-3 Fatty Acids (EPA and DHA)

AMINO ACIDS ? can be obtained at Health Food Stores Or some supermarkets. Take both if possible.Take 1 to 2 hours before or after meals
[b]Acetyl L- Carnitine[/b] 500mg twice a day Can take up to 2000mg a day.
[b]Alpha-Lipoic Acid[/b] 200mg to 500mg twice a day
Combination Pill – take ONE twice a day
Alpha lipoic acid 200mg, Acetyl-L-Carnitine 400- 500mg

PS I'm not sure how it will appear but, if you like, I can try attaching the document I was sent as a file ?.
Jim

[Author]

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