Cost Cutting on MY Drugs 2


Apologise for the closure of your thread.

I posted about the cost cutting with the best intentions but everything I post here is taken as offensive, despite it being factual relevant and part of the discussion.




· purposeful hijacking of threads in order to pursue an accusatory or antagonistic agenda.

· posts that promote false claims about MS or the MS Society or promote products/services related to treatment of MS.


I refuse to accept your apology as in general they were not relevant the discussions, you went off into a rant about DMD’s, and the research shows they do actually work depending on what studies you read and you must be reading the wrong ones . I am an ex REBIF and COPAXONE user, when my diagnosis was changed from RRMS to SPMS I read the research and discovered that in SPMS, Copaxone would do very little for my deteriorating condition so I made the decision to stop that particular treatment to save the PCT money.

I was diagnosed in 2004 and have been on the drugs treadmill ever since and my post was to try and help others by pre warning these sort of letters are out there not scaremonger as this seems to be your tactic. You start with a thread going back to 2002 at the start of the risk sharing programme that helped to get rid of the postcode drugs lottery, so your point is “?”

Quotes from first post


You have found the product which provides you relief, who am I to suggest that is no good for you? I’m not, for you it clearly works.



What will you do if it is found that the drug you currently use is no longer offered as it’s simply no longer cost effective? Does that potential not concern you enough to ask pertinent questions about it?

Yes I will ask questions and if the drug is no longer offered I will fight long and hard to get its continued use funded by the NHS.

My Campain for SATIVEX in now in its second year and I will continue to fight.

The article refers to “Recent Research” which seems to be the basis for the conclusions drawn by the MS Society and NICE. What is this “Recent Research”, I’d like to read it?

What article are “you” refering to. On second thoughts don’t ansewr that.

What will you do if your drug of choice is no longer made available by NICE for treatment under the NHS? Will you continue with it privately paying from your own pocket?

To be honest this is none of your or anyone else’s business.

I note you have been a member of the forum for only just over one week so a couple of questions for you.

Why did you join the forum, was it just to get reactions from the MODS, by the way Thanks To Liz for closing the thread. This was my first post for a very long time, the reason I stopped was people like EJC who just want to voice their own views and shout everyone else down.

You seem to be an intelligent person so why not try to be positive, the reason for the forum is to discuss NOT shout down.



Get a life is my message to you and find another forum to abuse.

Don’t think this will stay up for long but I had to have “My say”


Oh EJC has a ‘home’. It’s This Is MS, where he has a long thread, helping to promote his friend a dentist who claims to treat all sorts of conditions with orthodontics.

I’m not sure how on earth you can claim to be an expert in Crohn’s disease, but this dentist does - oh, and ME, MS and many others.

A week ago, I tried to see his point of view and agreed that MS causes all sorts of problems with spasms and how seeing a chiropractor (long before diagnosis) helped me greatly and got my facial bones back in alignment again. My spasms were so bad that none of my sinuses could drain and my face actually looked lopsided.

You know what thanks I got?

He sneered and mocked my story. I was disgusted and upset and outraged.

It’s time EJC left us to discuss OUR MS and the issues that affect us all.

Well said Dave.

Weird how attractive this forum is to people without MS who feel that it’s their divine right to advise us on which drugs we are ‘allowed’ to take to reduce relapse rate and hence subseqent disability which will never affect them whether they take sugar or sh!te with their morning tea…

In respect of your original post, if the drugs you are taking work for you, stress this in your appointment and refuse to be moved onto more cost effective, i.e. cheaper drugs.

Unfortunately the actions of the bankers on the global market and dribbled down ultimately to the CCG’s is a desperate attempt to cut costs which will include prescribing the cheapest available drugs regardless of others which may be more effective. If you’re happy with the drugs you are taking, stick to your guns and refuse to be moved. Contact PALS if you feel you are under pressure.

Well said Dave.

And the best of luck with your ongoing Sativex fight.

Karen x

Original post reported for personal abuse and publishing a private message in open forum.

Also on the forum you mention you’ll also find a long post about my wifes experience of CCSVI treatment and before that post about her experience with Copaxone.

I have been sitting back and reading what EJC has been saying for the last few days and trying to stay silent


You are becoming a bit of a joke


Dear mods and admin team,

There may well be a breach of t&c’s in this thread, but I hope you will bear in mind what and who provoked it.

Surely multiple complaints about one individual outweighs multiple complaints by one individual?

Particularly when the individual may have breached several of the Ts&Cs himself.


I am sorry if my post contributed to the thread being locked but certain things just cant be left unchallenged as people are being misinformed.

It was a good post and i am sure would have had a good response if not been taken over by someone.

I hope this has not put you off posting here. I had no idea this was happening (with drugs for pain) as i don’t take any other meds at the moment apart from rebif and suprised me that you could get such a letter.

Please carry on posting here - the info was useful. Do not let this person sabatage this site and put you off because if you leave - he has won!

The regular users of this site have had others try to promote their ‘cure for ms’ before unfortunately and are used to challenging any unproven ideas. He is not the first and won’t be the last.

EJC i would fight every step of the way if my rebif was taken away but i am also aware that new drugs/treatments are being trialled all the time. The research going on will improve drugs from what we have available now and will become better and better. So for now i stay on rebif (relapse free for 7 years) and then be open minded about changing to something else as these new PROVEN TRIALLED drugs become available.

p.s. We would all like to speak to your wife if possible as she is the one living with this condition. My husband knows a bit about ms but has no idea what it is like to be the person living with it. Its all very well knowing about it but actually experiencing it is very different indeed.

Thankyou - i will look forward to chatting to her.

Dave - my apologies again.

Best wishes (to Dave!)



Please don’t leave the Forum. Your original post was relevant and about an issue that will effect many people on here and needs to be discussed without it being HIJACKED by someone running their own agenda.

If you leave you are only allowing EJC to gain even more control over the contents of this Forum and to upset even more people. Solidarity is what we need at present. We must all stick together to keep discussing the things that are important to us and not let one lone maverick pull us apart.

As for the removal of pregablin from the subsidised list and having it replaced with alternative drugs I am in a slightly different situation as I live in Australia where only some drugs are on our subsidised list (called the PBS here) for neuropathic pain relief. Pregablin is only available at the subsidised rate if you are a Returned Soldier (!!!), and Gabapentin is only subsidised if you have epilepsy. For other prescriptions they are full cost of about $50.00 a script compared to the subsidised rate of $5.80. Which is a lot of money out of my Disability Payment. To me it is terribly wrong that the same medicine has such a huge price variation depending on who you are or what condition you have.

Don’t let this happen to you in the UK. Fight it by any means available. Equitable, affordable health care is one of the standards of a civilised society. Maybe the MS Society can help lobby to ensure continued affordability for essential medicines for MSers?



Emma has had eyesight problems for quite some time, particularly in her left eye to a degree that it’s very difficult for her to read computer screen. watch and operate in a normal day to day manner. Now she has had a reversal of symptoms due to work discussed elsewhere, her eyesight issues are now her single diggest debilitation.

She had a huge improvement in eyesight (whilst on the table) having a CCSVI procedure in Dec 2010 to a degree that it corrected her prescription by 20% and was of huge interest to a number of medical specialsts. It’s well documented and inculded in the clinical trials discussed in the latest published study. However over the next 2 years the improvment regressed back to a point where sitting reading a computer screen is not viable.

I post on Emma’s behalf, I read her my posts and all of yours. You are effectively talking with Emma an MS suffer who will do anything not to have to take drugs after her personal experiences with them over 15 years of suffering MS.

If we are 'effectively talking" with Emma why doesn’t she dictate the posts to you and you just act as her scribe so we actually get HER words verbatim?


Ooops sorry, Dave My apologies. I let myself get hijacked. Ignore the above pointless exchange


Simply becuase you don’t like my posts doesn’t make them wrong, I have a fair few people on this forum (any many who feel they can’t post due to aggression similar to that experienced in this thread) supporting what I post and sending me private messages voicing that support.

I don’t post these as it’s been made very clear that’s a breach of T&C’s. But I pass them along in prviate to Chloe and the mods to show there is a balanced debate here.

It’s a shame these people feel they can’t post due to open forum aggression don’t you think? They are other MS sufferers.

Don’t beleive me? Ask the mods, they will confirm these exist.

@Davew, it would be a great shame if you were to leave. Your original post had the potential to lead to a valid discussion, which would be of benefit to many contributors/readers of the forum

@ETC. I have got to hand it to you. You certainly have an evangelistic approach to your beliefs. Too bad your arguments are flawed but at least you remain committed, despite all the evidence to the contrary.

Passing private messages to admin is a breach of t&c’s. And it is very easy to say that one has had lots of messages of support when actually one has had none. If someone wants to show support for EJC, he or she should send a pm to Chloe or Stewart. Complaints can be made in exactly the same way - just send a pm to Chloe or Stewart.

You do realise that passing on PMs to ANYBODY is a breach of the T&Cs don’t you EJC? And that includes Admin and the Mods. PMs are PRIVATE Meassages…

And apologies again Dave as EJC yet again is HIJACKING your very valid thread.


EJC Why do you not start your own threads then we can all see who your supporters are and maybe just maybe we can highjack your valid comments.

There are plenty of websites promoting alternatives to those not currently available on the NHS or even at testing stage, most of us would welcome you joining forums on these sites and let us get on with our concerns.

I sympathise with your wife’s condition why not buy her talk type and voice reader them she may be able to do her own thing once you have started the computer for her.

Yes I think you will find this offensive but me hiding it here may take a while for the mods to pick it up but not it you go running to teacher first which seems to be the norm.

Can someone PM me when he has been banned and I will start my thread again.

Thanks to everyone for their positive comments

LIZ time to close this thread

wow you guys know how to keep admin busy.

I am waiting to go on avonex at the mo. Had a call from the company supplying the drug two weeks ago to say they have it ready just waiting for paper work. Now all this cost cutting is happening i hope that my avonex has not been stopped. So this is a very important subject for ms"ers. Just wish the last thread stayed on topic . THis thread will be locked so on the next one everyone stay on topic please.