Thank you for all your advice.
I will make an appointment to see my neurologist,
I’m sure I will have plenty more questions now I hace managed my first post.
Have a good weekend
Emma
Hi I was dx 6 years ago. I had 3 relapses (1 of which was Optic Neuritis) in 18 months. I have now been taking Avonex for 4 years and although I still have ups and downs and some syptoms have progressed I havent had a major relapse in that time.
Dear David603,
Providing links is of no value - especially to someone who is newly diagnosed with RRMS or the more aggressive form, PRRMS.
Maybe a brief history would help? I’m not sure if your time spent on the Yahoo LDN Group has helped you to see the picture.
Back in 2000, when I was diagnosed, there was no automatic access to the DMDs for those who qualified. This was an outrageous situation, with people being forced to mortgage their houses in order to be able to get access to effective drugs for RRMS.
The risk-sharing scheme was started in 2002 and it was shrouded in statistical language, but in reality it was a concession - a fudge to give people the right to start DMD treatment, if they had the right ‘flavour’ of MS.
The reason why the statistics didn’t ‘prove’ that the DMDs worked, was because very few neurologists kept records. That’s because the risk-sharing scheme wasn’t quite what it seemed.
At the time the scheme started, patients were being advised that the DMDs could only be prescribed at specialist hospitals and by only a few neurologists.
It became clear that this wasn’t going to work and so more hospitals and neuros were given permission to prescribe the four (at that time) drugs - Copaxone, Betaferon, Rebif and Avonex.
The statistics weren’t being collated regularly and so it was almost indecently easy by people like Dr Behan (last year) to draw the conclusion that the MS drugs don’t work. This is just rubbish.
I’m walking well - aged 50 and 11 years diagnosed, because my relapse rate was reduced and I was able to recover from each relapse and then spent several years without relapses. I’ve discovered that I’m not alone. Many, many people have had this result.
My first appointment with the MS nurse here, (who is the only Rebif nurse for an area the size of Wales and the island of Ireland) was an eye-opener. I said to her, that I must be the patient who’d been on Rebif for the longest time, but she told me that there were 23 people who’d been on Rebif since 1996 and all were still doing quite well. This is a poor province of northwest Spain and MS patients had access to better drug therapy than the UK. Shocking.
My neurologist told me last year, that he thought that my MS hadn’t progressed because I started Rebif almost immediately after diagnosis - but I think it’s luck and drugs and diet and exercise and more luck. Maybe he’s correct - I’d like that, but with MS it’s impossible to know this for sure.
If I’d known then, that I could take LDN along with beta-interferon, then I would have started that - but back in 2000, MS patients with an interest in trying to keep well, were being told with great authority (based on NO EVIDENCE) that the two drugs worked in opposite ways.
It wasn’t until 2009 and the LDN conference, that we discovered that it was perfectly fine to take beta-interferon and LDN together. The conflicting advice is still out there, Dudley Delany and Bob Lawrence are still giving this false advice.
Many commentators are now acknowledging that some people - do very, very well on the older DMDs. They just get on with their lives, working and living well and not spending time on message boards.
You once wrote that you knew for sure that this board had ‘Pharma shills’ posting on it. You were totally wrong then (yes, I know you apologised) and you are still wrong about issues to do with MS and it’s not helping people who newly diagnosed. If anyone is a ‘shill’ it’s you. You promote LDN without due consideration for the person with MS who is looking for information. Do you take it? I know you don’t get a kickback, but you just promote LDN.
Yes, LDN can work brilliantly - but it’s a risk and it’s irresponsible to play with people’s lives like this.
As I keep telling you, MS is complex and you just don’t seem to be able to appreciate this fact.
I like LDN. I owe my health to Rebif. LDN makes life easier and has been wonderful for my bladder. Rebif has stopped me from being perpetually ill.
MS sucks. I had to move countries to feel well and as a result, I’ve got my life back. I can go back to classical/opera singing and teaching. I never dreamed that I could recover from being doubly incontinent, shuffling around and not able to concentrate for more than five minutes. It’s been very hard work and has involved a lot of experimentation along with the drugs.
So…for MSers here and there,
Here’s a bit of advice from an old lag, who should be out getting on with her life (me, of course) and please note- this advice is for non-progressive RRMS.
Keep an open mind.
Try diet - it may change your life. It changed mine. I had gluten intolerance and ataxia. It took 3 years for me to feel well. It has been worth it (thanks Lollipop!).
Listen to your MS specialist/nurse. They see more people with MS than an ordinary neurologist or GP.
Don’t for goodness sake, turn down a drug that just may give you your life back because ‘someone on the MS board said it doesn’t work’.
Read and read more and ask questions.
Try LDN. There’s no guarantee or clinical evidence that it may work in some way to improve your life, but it’s worth a go.
If you are doubtful - go to the LDN Trust website and ask questions there. Mr Dickson from the pharmacy in Glasgow has been very helpful (and they have a lovely moderator).
er…sorry. That wasn’t brief.
Best wishes and abrazos to all,
Katrine.
Two things to think about with DMDs:
1 - The Interferons and Copaxone have been clinically proven to reduce the number of relapses for people with RRMS.
2 - Who can prescribe depends on the policy of the Head of Neurology in a particular area.
You still need to meet the criteria of two clinically significant relapses in two years, but this can be assessed by a nurse. Said nurse can recommend DMDs, but a formal examination by a neurologist may still be required. The actual prescription may well be written out by the nurse (provided (s)he has prescribing rights.
If Gilenya ever makes it onto the approved list, it will be yet another DMD that has been proven in clinical trials to reduce the number of relapses in people with RRMS.
Regrettably, some people do not appear capable of understanding just what RRMS means, and continue to “offer” some non-scientific evidence for alternative medications. Unfortunately, this can overshadow the genuine experiences of people who actually use some of these alternative medication - and these experiences are relevant to (and only to) people with the same condition.
The line of waffle about “… no clinical trials because Medication X is now a generic, so there is no money from the big drug companies to fund a trial …” is just that - a line of waffle. There is a herbal medication called St Johns Wort. It has been used for centuries. It has been clinically trialled. It has been clinically trialled several times. It is effective against cases of mild depression. It can have some very nasty side effects, and it has some very nasty interactions with severl prescription drugs.This is no bar to its use against mild depresion, and I know someone who will cite their own personal experience that it can be beneficial.
Own personal experience is just that. and if offered by a person with the same condition as another, is probably very relevant.
Published clinical trials are of great value as they can be read and the contents evaluated. It can help if you are used to reading or writing scientific reports, and can understand the statistics, but the conclusions are normally phrased so that a lay person can comprehend them.
Second person observations, offered to a third party, are without any practical value.
In short, if you have RRMS, and meet the criteria, there is a high probability that one of the prescription DMDs will cut down on relapses - and that is all. The decision to take a DMD is for the individual, just as the decision to take something without any scientific credibility is also for the individual. There are people on this forum who have made both such decisions. Think about it.
Geoff