[JdaxParticipant]

Hi Debs. I developed PN in my feet from Velcade 18 months ago on the 4th cycle. At its worst, I could hardly walk across a room. The improvement was very slow, but 18 months later, it?s improved and the pain is low enough to forget it – well most of the time anyway.

I echo what has already been said?.

I?m sure you?ll get good advice if you call the helpline. You could also Google – Multiple Myeloma Peripheral Neuropathy ? lots on supplements like B Complex, Folic acid, Acetyl l-carntine, alpha Lipoic acid and so on but check they're safe !..

The pain doctor (when you finally manage to see him) should be a big help. Mine added Nortriptylene to the Gabapentin I was on (though it?s usually Amitriptylene) and Tramadol for the pain.
I found if my feet were rested physically from a good night?s sleep made a difference (OK, the sleeping pills helped?).
When it was bad in the day, I used to lay on my front on the bed, feet on a couple of pillows, soles are facing the ceiling, for 20 ? 30 mins till they stopped ?jangling?.

Maybe it?s worth experimenting ? even with the bedsocks !.

I?ll keep my fingers crossed for you Debs and hope you get the help you need soon.

Jim

[JdaxParticipant]

Hi Michelle,

It was good to meet yourself and Phil recently at the Bristol workshop.

I hadn't realised you were about to hold your first meeting !.

I think it's great what you're doing and I'm sure it'll go well

Jim

[JdaxParticipant]

Hi Donna,

I believe yout father's confusion can be related to very high calcium levels – hence the medical team trying to reduce the levels.

I think the same as Michelle re the second opinion. There are 'other things', perhaps less widely used that can and are being used. I know someone else who didn't respond to the standard treatments and was put on one of these (sorry I can't remember what it was).

Calling the Myeloma help line has been a great help to me. They're very easy to talk to and give great advice.

Hoping the best for you and your Dad.

Jim

[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

[JdaxParticipant]

Thanks for working on the Search function !.

Is it possible to have a more tailored search [u]criteria[/u] ?
I'm thinking of the ability to search within Topics, Posts or Both ?.

Is it possible to have a clearer display of the results than the current one on the 'old' site which seems to show them in random date order and with many duplicates in the result… ?.

Jim

[JdaxParticipant]

Hi Stuart,

I think adding some would be useful, otherwise an awfult lot will end up on 'General' by default !.

How about one for 'Treatments' ?. It could cover the many questions and comments on ones like CDT and CVD and newer treatments. Maybe the one for 'Access to Treatment' (which is quite specific) could be part of it.

Also one for 'Side effects' which could include Peripheral Neuropathy ?.

PS. I think a good search facility for the Discussion Forum is crucial, in order to find existing info in amongst the huge mount of data already posted.

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

[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]

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

[Author]

Posts