or should I say budget cut!!! Feeling slightly cut adrift up a creek without a paddle!! Is there anyone out there who has been through this and what treatments are people using to help with secondary progressive… if any…? I’ve just seen the update about the statin but any other ideas would be very welcome. Thank you
J x
J, I probably can’t help you much as my medication regime is supposedly about relief from Neuropathetic pain.
However,those that know, will have a better chance of helping you if they have an idea what you were on,dosages,how long for, blah blah
Regards, Steve
Morning J, I too have SPMS, came straight in at that, so I have never been on DMD, I take meds to help the symptoms, according to my nurse, GP and Neuro that’s all they can do, Gabepentin at the moment for the nerve pain, I’m changing to Pregabalin becacause the first is no longer doing the job, Baclofen for the spasms, and Betahistin for the unbalanced feeling, although again this doesn’t always work, I get so frustrated because there doesn’t seem to be anything else, good luck and try to keep you’re spirits up, Jean x
Hi,
I know how you feel - it’s hard to accept that there are no drugs for us SPers but at the moment that’s the case.
I don’t think (for once) that money is at the root of your neuros decision to stop DMDs - if you have gone SP they won’t do any good so what’s the point of taking the chemicals?
Lots of SPers swear by LDN. It didn’t help me but you might be more fortunate. If Whammel or Campion see this thread they will point you in the right direction.
Jane
.
What is that about?
Hello J,
I have SPMS and I take Keppra and clonazepam and at the moment Gabapentin, but the Gabapentin made me extreemly dizzy causing me to have a fall, so have spoken to my MS nurse who in turn will have a chat with my neuro who thinks she will put me onto Pregabalin, don’t know if that will work, can but hope.
Janet
x
Have you looked at Low Dose Naltrexone (LDN)?
It’s a prescription drug, often prescribed for MS “off label”, and your GP can prescribe it for you.
If you go to http://www.ldnresearchtrust.org/ there’s an information pack that you can download to give to your GP.
If your GP won’t prescribe it (which some won’t, despite the legal and health arguments in favour), then there are various routes to obtaining it privately at a reasonableish cost of £18.50 per month for LDN in solution or £30.50 per month for capsules. If you use a private prescribing service such as e-med, you’ll also pay about £80 p.a. = £20 annual membership fee + £15 per quarter prescription charge.
Lolli xx
My understanding is that although there is not much they can do to halt the progression, there are meds that help with symptom control.
I have been posting about my husband who has SP, he is thinking of stopping all his meds as he is thinking that they are causing as many problems as they solve.
How have you been advised to manage your ‘holiday’? Can I ask what you are taking?
Hello,
There are no drugs available to keep the progression of SPMS at bay. There are drug trials for tysabri (ASCEND trial) and the general outlook on the research side is quite promising. Statins may well help but the patent date has expired so it is unlikely to be trialled by a pharmaceutical company.
Obviously there are drugs to help with symptom relief. LDN is talked about as providing all sorts of relief, helps me with bladder and fatigue issues, it certainly helps me. I have SPMS, diagnosed in 1995.
So you will get symptom relief but there is not much else. Enjoy the holiday, might last for several years. If its any help then take a look at my website www.aid4disabled.com, you might find something helpful there.
Good luck,
Patrick.
Hi J
Like Jean (greenhouse) my diagnosis came straight in with Secondary Progressive and I’m not on any meds for the MS itself, that does take some getting used to. The only med I am on for symptom control is Solefenacin to help my errant bladder behave.
The latest issue of the MS magazine has quite a good section on progressive MS and certainly research is moving on all the time.
It is worth remembering that progressive MS can plateau all on its own, I’m still waiting
I’m not convinced by the LDN arguments, but it might be worth considering for help with symptoms. There is no evidence it helps with progression. What have you got to lose apart from a few quid? CCSVI does seem to be largely discredited now, and it’s also very expensive and potentially dangerous.
Take care
Hello Annie B
LDN, OK it has been officially trialled against placebo so that results can be compared but there are too many stories to deny the fact that it makes life easier. As I said it makes my bladder control a lot easier and it does keep my fatigue down. It would appear to be subtly different for everyone. No its not a magic bullet but it can make life easier. Check out LDN website http://www.lowdosenaltrexone.org/
CCSVI load of expensive b******t, no one can reproduce the results. I think that the people who are saying how wonderful it is are those who are doing the surgery and charging people for the pleasure. Once again no official trials.
Wish my progressive MS would plateau out
Regards,
Hello Patrick
Thanks for the info on LDN. However I remain sceptical, I don’t belong to the ‘there is anecdotal evidence so it must be true’ camp. Having been around these boards for a long time I have read posts from people for whom at best LDN has made no difference. I have also read posts by people swearing by a whole host of unorthodox treatments. I find I am less tired after HBOT and I also know people who say it helps with bladder problems. HBOT is probably worth a try as is LDN , they are both relatively cheap and unlikely to do any harm. However I would not be as foolish as to claim that HBOT is anything other than something that might help with MS symptoms. LDN might also help with MS symptoms.
As I previously said I do think that one of the hardest things to come to terms with a diagnosis of progressive MS is that, at the moment, there is no proven way to deal with it.
Regards
Hello Annie,
Yup you are right nobody knows how to deal with it , a cure would make it easier to deal with.
OK so no cure for MS is depressing but so is the slow loss of functionality because there is no way of stopping the progression. For example I need help to walk, its difficult to do up buttons of my shirt, I trip over things, I fall over because of squiffy balance, I’ve got double vision. That & a whole lot more is much more depressing. I do not know how disabled I will become. I can no longer do day to day activities like ironing, gardening, drive a car, its the loss on independence. In 1999 I did a 16 mile walk with the family and dogs, got home and cooked a roast meal - fond memories.
I’m not depressed but I am seriously p****d off.
Also meant to say that LDN has not been trialled against a placebo - stupid typo
Patrick
Hi Patrick
I knew what you meant
I find the uncertainty hard to deal with, I was always a control freak so a personal development opportunity.
I miss walking and gardening hugely but I’m still here. Have to say getting out of housework has been an unexpected bonus
There will be a cure one day but when is the question. I don’t think it will come in time to be of any personal benefit.
Anne