This topic contains 13 replies, has 5 voices, and was last updated by 
628872 11 years, 4 months ago.
Hi All
Just wanted to give you some information that may help you PN sufferers. Chris has had bad neuropathy in his feet since December after 4 cycles of Velcade. Unfortunately his symptoms didn;t really appear until after the last round so too late to reduce the dose. The pain was severe during December and January, numb toes but extremely painful burning in the soles of his feet and shooting pains up his lower legs. He was prescribed 3 x 300ml Pregablin which once he got up to the dose did take the edge off the sharp shooting pains but didn't get rid of it by a long way.
Over the months and during his sct it has subsided so he decided to reduce the dose, in agreement with his consultant of course. So he is now on 1 x 300ml per day and has not noticed any worsening in the pain. I have recently got him some Alpha Lipoic Acid and Acetyl Carnitine from a local complementary pharmacist. This is prescribed in the USA at several hospitals at the outset of treatment to help prevent PN. He has been taking it for two weeks now and has also returned to work a couple of afternoons which involves him standing on his feet. So far so good, he thinks it is making a small difference. I will update you in a couple of weeks as to how its going.
Christine XX
Hi Christine,
So glad to hear Chris' news, long may it continue. Just a word of warning with the Alpha Lipoic Acid and Acetyl Carnitine regime. They are both antioxidants and should not be used if taking Velcade. Something I was warned about when mentioning green tea. Worth chacking up on it with Ellen maybe?
Pat
xxx
Hi Pat
Chris isn't on any treatment at the moment, and we've ran it by our consultant but that does surprise me because they actually prescribe it to be taken with velcade regimes in the USA ?? Blimey we don't half have contrasting advice given sometimes don't we !
Thanks Pat and hope you are feeling well.
Christine X
Hi my name is Kim and i am not sure if i am using this website correctly yet as i have only just registered. I am feeling very down and emotional at the moment as my husband is suffering terribly with PN and am looking for as much help and feedback as possible to try and reduce his pain, feeling quite desperate atm, i have tried to contact his clinical nurse but she has not got back to me yet, i have just read one persons post re. Pregablin and wonder if i should suggest this to the nurse to prescribe for him to try, dont know if they would find that helpful??? Please can anyone help x
Hi Kim
So sorry your husband is suffering, I know exactly how that feels.
You don't mention what stage he is at with treatment. Is he in the middle of chemo now ? Normally they monitor PN quite closely. In my husbands case it didn't start until after he finished his last cycle so too late to reduce the dose.
Get straight on to his consultant as if it's severe they should prescribe something pretty quick, unless he has any other issues.
Chris was put on Pregablin which does take several weeks to take effect and the dose was increased steadily to try and get on top of the pain.
Where is the pain and what is it like, cold, numb, shooting pains ?
Keep in touch Kim and let me know whats happening, I'll help as much as I can.
Christine XX
Hi Christine, thank you so much for getting back to me, i just looked at my screen and saw i had your response and i burst into tears…..its so good to know that there is someone out there who can relate to what we are going through. My husband Dave is quite a private person and i have only hinted to him that i have been looking at this website forum as i find it comforting but he did not seem to think it would help. I feel so alone and scared and i know he is too, although up until now he has been so strong, positive and brave through all that he has gone through, his doctors have described him as 'stoic' on his medical records. But after 5 long months we are both exhausted and low. Dave was diagnosed in Feb when he collapsed after a 15 month history of back pain, orginally diagnosed as a slipped disc. From then on we have had the worst time of our lives. He had a collapsed vertabra with suspected cord compression and collapsed with a massive saddle pulmonary embolism and was in HDU for 5 days. He spent 6 weeks in hospital unable to put any weight on his leg bones due to weakness and consequently had two separate kyphoplasty ops, one in march to fix two vertabra and another in may to fix one. He had to learn to walk again and has just now gone from wheelchair to frame to crutches even though stil in some pain in his lower back. Dave completed four cycles of chemo (velcade) before we were told on 22 may that his paraprotein had plateaud and would not be having cycle 5 and 6. The next stage is a stem cell transplant which is due on 8 july, and now we have the added pain on PN which is causing more sleepless nights and feelings of hopelessnes. It is in his feet and legs and very bad and waiting to see if any other medication can help. thank you for listening and i look forward to speaking again Kim x
Hi Kim,
Sorry to have to welcome you to this forum but it is a wonderful place for information and support.
My husband Phil had six cycles of velcade and the last two cycles of velcade were reduced due to the PN in his feet. Phil originally tried Amitriptyline but that did not help so after his SCT he switched to Pregablin. This also did not help in Phil's case so he has now stopped taking it. He has started taking Vitamin B as this may help but he has not noticed any difference yet. But just because none of these workd for Phil does not mean they will not work for Dave, everyone's journey is very different even if a common path is followed. We were told that for most people the PN will fade within two months of the SCT so hopefully this will be the case for Dave.
Phil also struggles to sleep some nights due to the PN but as he is starting to feel better he is able to ignore it more during the day as he gets busier.
Megan
Hi Kim
I am so sorry you are having such a bad time of things,it is heart breaking to watch some one you love go through this decease ,I cannot tell you things are going to get better over night,but you will become more knowledgeable about Myeloma,it is such a big learning curve.:-(
Do not hesitate to ask anything,its worth coming on here just for information,if you need answers straight away ring Ellen or Maggi on the free phone,they are Myeloma trained nurses and can give you instant answers,you own doctor can prescribe drugs so,once you know the problem,you can ring up the doctor.:-0
He is nearly there now,the hard work has been done,it is worth asking questions on here about SCT,you will find lots of tips,young Tom is doing a bit of a blog on here,so well worth reading,but just remember,every one is different.:-P
Good luck,and welcome,this lot will soon cheer you up Love Eve
Hi Megan and thank you for your input. Dave is on amitriptyline which has just been increased over the past week so not sure if its doing any good yet and he has also been advised to increase the gabapentin which also does not seem to have made any difference. I will definately enquire about the pregablin though and will get some vitamin B6, we will try anything. Thank you so much, i dont feel so alone now. xxxx
Thank you Eve, its good to know that we are not the only ones on this horrible journey, its feels nice to know that there are people out there who know what we are going through. I spoke to Ellen at Myeloma UK a few weeks ago and she told me about this forum but at first i did not know how to use it. Im glad that i persevered today (albeit out of desperation) and i look forward to chatting again in the future love Kim X
Hi Kim,
You may have already seen it but there is a helpful infosheet on this site about neuropathy:
http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/peripheral-neuropathy/
It has this to say about vitamins:
[b][u]Vitamin supplements[/u][/b]
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 this helps.
Megan
Ah thanks Megan, i will certainly make a note of these. Our clinical nurse has just got back to us and she is consulting with the doctor to see if there is any addition/amendment to what Dave is already prescribed that can help x
Hi Kim
Wow he has been through the wars. You will find great advice and comfort from people on this site, keep coming on you mustn't be alone. I can only echo the advice from Megan. Chris is six months on from the onset of PN and the symptoms are definitely much better. He has been taking Alpha Lipoic Acid and Acetyl Carnitine and has noticed some improvement. He has also tried acupuncture which he stopped when he had his SCT but he is going to have another 4 sessions to see if that helps. He is back at work two days a week which at one point when the PN was so bad we never thought he would return to work at all.
Good luck and let us know how he gets on.
Christine X
Thanks Christine I will keep in touch and I hope things improve for u both too x
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