Hi, Finally managed to log in! I could do with some advice / things to think about, as I have to make a decision about which dmd’s to take. I saw new consultant on Friday who thinks I am a good candidate for some help, although since then I am going through a third episode in 8 months ( no sign of it at the consultation:() I could do with some info / advice / personal experiences… If that’s ok? I take anti depressants which the nurses think might make a difference in my decision… HELP! Thanks, as always, Jo x
The evidence that LDN is a DMD come from the medical conferences. It has been in use for 25 years and that is what it primarily does, according to the doctors experienced at using it. The medical conferences are on line so anyone can draw their own conclusions. It is reasonable to say that is not sufficient evidence but it is not reasonable to say there is no evidence.
David, the original poster (sorry about all this, Jo) made a perfectly straighforward request for advice about the DMDs that the consultant might offer. You know perfectly well what the mainstream, licensed DMDs are (even if you don’t like them), and you know perfectly well that they do not include LDN. I know your views on the benefits of LDN, as do all of us who are regulars on the old MSS board. I do not appreciate your deliberately trying to muddy the waters by giving the impression that LDN is generally accepted as a DMD when it isn’t. And please don’t throw up your hands and say you are only trying to be ‘helpful.’ Alison
David you have said “LDN is probably one of the most effective DMD’s but because it is based on an out of patent drug it is never likely to be licensed for MS.” based on what??? It is not currently one of the DMD offered and approved by NICE. It’s all very well saying such and that it will do wonders but unless there is the clinical evedance, availability and acceptance of the drug in question why offer something that has, as yet, been clinically proven and is avable to all? I have done my reasearch on LDN and posted what was the case for my PCT, yet you fail to advice that it is either approved as a medication for MS or that it is down to the clinical team. LDN does have it’s advocates but as yet it is unproven in the way that the OP was asking. We all spend a lot of time chasing cures and solutions to our illness. However when we post to those who have just started down this road, please forworn them of the pitfall’s and be honest about your convictions. Just my point of view. Strudders.
Hi Jo Hope the DMD decision is not stressing you out too much! The thing to think about, your consultant will offer you the thing which is best for you! Don’t worry too much! I was on Rebif for 3 years, and that worked well for 3 years, no disease progression etc, but I kept getting more and more relapses, so I’m now on Tysabri. Regarding the LDN debate, I can only give you my experience - avoid like the plague! It did nothing positive for me, and left me with some very nasty side effects to start with, so I had to take a tiny dose to get it into my system. My neuro said he really didn’t advocate it, it’s not a DMD at all. Some people take it successfully for symptom relief, and some to improve mood, it actually did neither for me? It’s all very tricky to get your head around! Ring your MS nurse, they are great at guiding you through these things! Take care! Love Donna x
Hi Jo, Out of the standard 4 DMDs Rebif, Avonex and Betaferon are all Interferons and work on reducing the relpase rate by about 1/3. Copaxone also reduces the relpase rate by the same amount but has a different chemical basis and works in different way to achieve a similar result. All 4 are reasonably well tolerated with the most common side effect from the 3 interferons being flu-like side effects and Copaxone causing site reactions. Tysabri is usually used in MS that has not responded well to the standard 4 or in cases of highly aggressive MS or where a person can’t tolerate the standard 4. MS decisions is a helpful website you might want to check out to help figure out which DMD may suit you best. http://www.msdecisions.org.uk/ If you are prone to depression you may not be offered the Interferons as they have been shown to cause depression in some people so your consultant may prefer to offer you Copaxone. When I started on DMDs I chose Copaxone as I didn’t fancy the flu symptoms and I too struggle with depression. Regardless of what david603 says about LDN do be aware that your neuro won’t offer you this drug. David is a strong advocate of LDN and is most disparaging about other forms of treatment. Many people do use LDN to help relieve various symptoms of MS bt it has not gone through any proper clinical trials and is not proven to be effective at reducing relpase rate or slowing progression. At best it can give some symptomatic relief and therefore if it is to be included as an MS treatment at all it would be under the grouping of symtom relief as are Baclofen, anti-depressants and various neurogenic pain relievers. Hope your decion making goes smoothly and remember, whichever choice you make, you are ding something positive to regain control and to stick it to the MS. Also if the treatment you choose doesn’t suit you, you can change and try another one. Cheers and good luck, Belinda
Hi Jo. I went on Copaxone in 2006 and, apart from site reactions, did very well on it - I was relapse free for more than 3.5 years. Unfortunately (and for reasons that I’m still not convinced about), my neuro took me off it in 2010 because I was relapsing. I then had the year from hell while I waited for Fingolimod (Gilenya) to be approved. As you may know, it still hasn’t been So my neuro recently gave me the option of going back on Copaxone or starting an interferon while I continued to wait. Like a lot of people, I’d chosen Copaxone the first time because it doesn’t give any flu symptoms, but going back on it again seemed like, well, going back, so this time I chose Rebif. The main reason I chose Rebif is because its statistics are a wee bit better than Avonex and Betaferon. I am now using the Rebismart (which is a very cool electronic autoinjector thing with ridiculously discreet needles - I swear even the world’s worst needle phobic could use this!). Tbh, I am having a problem with insomnia which I hadn’t realised is a side effect, but with any luck this will wear off. I believe that the flu symptoms are much milder when new starters increase the dose gradually, and that they wear off in a few months for most people. I’m certainly hoping so! The best place to look for info on DMDs is the msdecisions website. And the single most important thing to know is that there is no right decision! Just go with your instincts. Incidentally, there is absolutely solid evidence that DMDs reduce the number of relapses, reduce the severity of relapses that do happen, and delay progression to disability. A reduction in relapses by 30% doesn’t sound like a lot to some people, but if I’d stayed on Copaxone last year and hadn’t had that whopper in the summer, I wouldn’t now have an EDSS of 6 (needing a walking stick to cover 100m) instead of the EDSS of 1(ish) I had before. In my book, anything is worth avoiding that - and injections are a remarkably low price to pay! Karen x PS Must comment on David603’s assertion that the LDN conferences show that LDN works so brilliantly - conferences are full of like-minded people. Asking people at an LDN conference if LDN is a wonder drug is a bit like asking a churchful of Christians if God is real!
Hi Jo I have been on Rebif for 2 years and have only had 1 relapse in that time which was mostly sensory so that was a big improvement for me as I had had 2 significant relapses (neuro’s wording, I think they are all significant) in quick succession which led to diagnosis. I too use the Rebismart auto injector having changed from the Rebiject which was a bit brutal. The injections are much easier and less painful than I had thought they would be and the side effects were not so bad either. I had flu type achiness after injection for the first few weeks but it was well controlled with painkillers and eased off just before I increased to the maximum dose. I do get red blotches at injection sites but they are not painful. As others have said the msdecisions website is the best place to compare the various drugs and see which one you feel will fit in with your lifestyle. I also discussed the pros and cons with the specialist nurse at the hospital and also my local MS nurse before opting for Rebif. You will receive full training for self injecting and, after the first few, it will soon become part of your routine and will be second nature. Good luck whatever you decide, keep us posted Tracey
It’s worth knowing that with the licensed DMDs, you will see someone at least twice per year, which is important and comforting support for when you are first diagnosed. Unless your neuro is pro-LDN (there are some) you won’t be monitored. If you are RRMS and you get worse, then you will become eligible for the newer drugs, which work really well. If you opt for LDN and you get worse, no one will know, except your GP and they don’t know much about MS, unless they have personal experience of it. There are people here who do just take LDN and who are well - but it’s a risk. There is no guarantee that you won’t keep relapsing. I spent a few months on LDN alone, after 8 years on Rebif and had a very bad relapse. I’d moved countries and thanks to luck and a number of other things, I hadn’t had a relapse for years and so thought that I must be SPMS. I was wrong - which is actually quite good news. My neuro believes that starting treatment early has kept me in the RRMS stage - in my case. The frustrating truth about MS is that there are no absolutes. Nothing works for everyone. I’ve been back on Rebif and LDN since 09 and I’m doing extremely well. There is one thing you can take that has been shown to help to calm the MS and that is Vitamin D3. I take 10,000 iu’s per day and all the research is looking good for this vitamin helping with many conditions. To sum up - you can take LDN with beta-interferon (you’ll find lots of advice telling you that you can’t - but it’s out-of-date). Do start treatment. It’s worth it and please keep us updated on how you are? This information is useful for newly-diagnosed people. K xxx
Hi, I have been on betaferon(now called extavia) since it was brand newly licensed, 15 years ago and although I am worse now than i was then I think , all things considered, I have done well enough on it, I have had 2 children and I still work. As for the comments about Ldn, it is not a dmd and, by all means research it but please also consider the licensed dmd’s. Cheryl :)-
I’ve tried them all! Now coming up to 4 years on TYSABRI…the best one so far by a mile…I just wish it had been available in 1998 when I was diagnosed. i’ve done a diary - Christine on Tysabri diaries on msrc.org.uk. Have a look - it’ll blow you away! Good luck, Christine