Tysabri and LDN

Everyday living
1

Hello all. Probally on this train late (!!) but thought id ask.

I have been on tysabri for years!! (Phase III of the trial) so coming upto 10 years. And apart from the pml - trial halted debacle or “progression central” as I like to call it ! I have been very stable.

Stable is a medical term. In my case it means shot balance, very stiff legs and very fatigued but halted progression.

I am due for my next infusion on Thursday and was going to ask about LDN as stopping ms is one thing. Recovering from it is quite another. Maybe LDN can help? I feel im am just ‘treading water’ and I want to fight!!

Wondered if anyone is on both drugs? Names of UK neuros who have perscribed both so I have ‘ammo’ to hit the neuro with!!?? Fighting tips!!

Any replies would be great.

Thanks,

Andrew

2

There was someone on the old site that successfully took both, but not seen her on here lately. I think Sami.I was her username.

Have you tried physio?

3

There are a few people that get minor symptom improvement from LDN but unfortunately that is not really what it does. I guess it depends on how effective you have found Tysabrie, if it has stopped all disease progression then LDN is unlikely to do any more for you, if not then it may be worth trying.

When you mix drugs however you are in completely experimental territory, you could seek out a doctor experienced in treating people with both Tysabrie and LDN that might give you some useful information

4

LDN and Tysabri have completely different purposes.

There is no scientifc evidence that LDN stops progression, it may help with symptom alleviation.

Lots of people report symptom improvement from a variety of things as well as LDN: Diet, HBOT to name a few.

My own view would be that if it can’t do any harm then I would give it a try.

Sorry can’t help with the LDN and Tysabri combination

Good Luck!

5

The evidence for LDN stopping disease progress comes from the medical conferences.

I think the chance of LDN doing any harm on its own providing you set the dose correctly is very low.

However there are risks with Tysabri which are well know and to me incidentally I would probably find acceptable but once you start adding other things like LDN I just do not know. Hence the recommendation to seek competent medical advise. They will not know but should be much more competent to advise.

6

Hi Andrew - Whammel is right - there was someone who was on the old forum, called Sami l who was taking both Tysabri and LDN with the knowledge and support of her neurologist.

There may be some advice available at the LDN Trust. I’m sorry that I can’t be of more help - but she may still be listed as a user on this site.

I do remember her writing that her neuro reckoned that it couldn’t hurt to add LDN to the cocktail of drugs, as the dose is so small.

David is being rather disingenuous - he knows perfectly well that many, if not most of the neurologists in the NHS won’t recommend LDN.

Maybe he could do the research for you and advise you or even offer advice?

To be serious - you could try contacting Stephen Dickson at the pharmacy in Glasgow. He’s the pharmacist who supplies most of the LDN to people and he should be able to offer you some good advice. He was very helpful to me, when I needed to know if LDN worked well with beta-interferon and he knows far more about how it works than most doctors. It was really great to find out that it works just fine with beta-interferon.

Most people with RRMS who take LDN, find that it helps with symptom relief - NOT that it stops progression. David seems to have got this the wrong way around. It may work in a totally different way with progressive MS (PPMS/SPMS).

I hope this helps a little. It’s very good to read about someone who’s been on Tysabri for so long.

best wishes,

Katrine

7

Katrine

If you look back to what I said I was advising contacting a doctor experienced in both LDN and Tysabri. I doubt that would include many NHS neurologists.

I repeat the evidence that LDN stops disease progress for most comes from the medical conferences. By all means say you do not feel this is sufficient evidence but please do not say the evidence does not exist.

8

Low-Dose Naltrexone

http://www.mssociety.org.uk/ms-news-and-research/ms-research/new-and-potential-treatments/other-avenues-research/ldn

:slight_smile:

9

I think low dose naltrexone is rather wonderful, but take a look at the information on www.ldnresearchtrust.org and see what you make of it.

10

Umm David, if LDN does not give minor symptom improvement then WHAT does it do??? There is NO evidence anywhere to suggest it stops progression if that s what you are suggesting…

I know your wife is fortunate enough to have not progressed since being on it but has it never occurred to you that her MS may well have plateaued WITHOUT the LDN? MS does that you know…

The only evidence regarding LDN is anecdotal and the only consistent theme in the anecdotal responses is that it gives minor symptom relief for SOME people.

In response to the original poster I would talk to your neuro about various strategies to help with the ongoing symptoms of your MS. For example the stiffness in the legs may be helped by Baclofen and there are various drugs that can help with fatigue too.

It is great news that the Tysabri has stopped the progression :slight_smile:

Cheers,

Belinda

11

Hi thanks for all your replies.

Just to clear up any confusion: I dont want to include LDN in my ‘drug cocktail’ to help stop progression as Tysabri appears to be doing that. I want to take LDN to help my immune system in any recovery I may make.

I had the tysabri infusion yesterday and the study doctor had asked my neuro about me taking LDN. Apparentely my neuro has come out with the classic neuro lines “it has not been trialled” “it hasn’t been approved by anyone FDA etc”. And he doesn’t think it would help me.

I hit the roof and I am going to see neuro in 3 weeks not a flunky!!

i have, in the cold light of day, been trying to investigate the points I can make in 3 weeks and any additional points that anyone else can think of would be welcome.

  1. Neuro’s comments didn’t appear to infer there would be any problems in terms of tysabri interactions or the trial.

  2. LDN hasn’t been trialled as there is not a drug company who wishes to conduct an expensive trial as no pile of ‘white gold’ waiting.

Not been approved as no trial.

  1. Its a small dose and i’m happy to take the ‘risk’.

Comments / thoughts always welcome.

Thanks

Andrew

12

My only comment would be it is your body, you run the risks, you get the benefits so it should be your choice.

If you are asking for information to get a doctor to prescribe LDN:-

The I would suggest the main evidence base is Anecdotal

http://www.ncbi.nlm.nih.gov/pubmed/15694688

25 years clinical experience

The medical conferences just a couple of links :-

http://www.lowdosenaltrexone.org/events.htm

http://glasgowldn2009.com/

A few very small clinical trials:-

http://www.lowdosenaltrexone.org/ldn_trials.htm

Confirmation that any doctor can prescribe LDN

House of commons written answer:-

http://www.publications.parliament.uk/pa/cm200405/cmhansrd/vo050302/text/50302w19.htm

Re confirmed in the recent debate on 8.12.11

http://www.publications.parliament.uk/pa/cm200405/cmhansrd/vo050302/text/50302w19.htm

Loads of scientific papers dating back years:-

http://www.ldnscience.org/

In the end however it is down to negotiation you can not demand any doctor prescribe LDN

There are plenty of doctors that will prescribe LDN privately.

I have over the years helped a fair number of people prepare a case to get their own NHS doctor prescribe LDN and to date only had one failure and even that doctor agreed to monitor the patient and helped resolve problems they had.

Getting it prescribed on the NHS is much more to do with you PCT policies that the doctor, although of course you do need to start with a NHS doctor prepared to prescribe it before you have any chance of getting a NHS prescription.

I have never however had any experience with anyone who wanted to mix LDN with Tysabri so have no idea if that will add any difficulty in getting a prescription. I am sure however if it is what you want to do you will find someone to prescribe it for you.

I agree with you however the chance of anyone funding licensing trials is extremely low.

13

I reckon you’re spot on with 3 - it’s completely your choice, it’s unlikely to do much harm and might even do you some good. Plus you can always stop it if it doesn’t work or makes you worse.

Not so sure about 1. If you’re on a Tysabri trial, they may chuck you out if they know about the LDN as it would screw up their data. If you aren’t on a trial then there’s not a whole lot the neuros can do as far as I know!

Not so sure about 2 either. I’m 100% sure that drug companies don’t fund LDN research because they can’t make enough money to pay the costs off, but drug companies don’t actually fund all drug research. I’m really not sure why there haven’t been more studies of LDN. This one isn’t all that important though re your decision though!

I hope you can sort it out, and that LDN works well for you.

Karen x

14

Andrew

I do agree with Karen that it should be very material to a trial investigator if you decide to take LDN, however what you do should still be your choice.

MS is a truly terrible disease and if Tysabri has held you stable and you personally have not suffered adverse effects from it then you do need to think carefully before doing anything that might jeopardise your access to it.