Forum

SPMS is there a drug treatment

I went straight to a diagnosis of SPMS, having been told for several years before that there was nothing wrong and to ignore it and it will go away. Having therefore missed RRMS beta interferon was never an option for me.

Is there a drug in use for spms?

If so, what are the effects, good and bad?

How do I persuade my neurologist to let me try it?

Hello,

ATt he moment there is nothing on the market for SPMS.

As Gregsmyth said they are trialing Tysabri. I think they are quite optimistic about it but it will take about 3 years before NICE etc give it thumbs up or thumbs down.

Sorry to be a bit depressing

I’m pretty sure Rebif has been approved by the EU for use in SPMS. I know it is here in Australia. If it is approved by the EU you shouldn’t need to persuade your neuro, just ask him to prescribe it.

Good luck and sorry to hear of your diagnosis

Belinda

Hi Flowerpot

My understanding is that there are at least two drugs going through the process for SPMS: Masitinib (currently licensed in Europe for veterinary use, taken orally a couple of times a day) and natalizumab (otherwise known as Tysabri). The former is on phase 3 (of 5) of accreditation; the latter is on phase 2. That means that both are a few years down the line of being endorsed by NICE if at all.

Sorry to hear your news and wish I had better news for you.

Hello Brog64,

In the UK a drug has to be aproved by NICE before a doctor will prescribe it unless he/she is an awfully nice person

Fabridine has not yet been approved by NICE as a treatment for MS. I hope to go on a trial to look at its efficacy but my neuro must convince my PCT to authorise issuing it to me,

In UK horrific amount of red tape and hoops to jump through befoire a drug can be prescribed.

Patrick

All of the injectables are NICE approved for SPMS, but you need to meet the criteria:

Can walk 10 metres or more with or without assistance
• have had at least two disabling relapses in the past two years
• have had minimal increase in disability due to gradual progression over the past two years
• are aged over 18 years

NICE have avoided defining “disabling” and “minimal”, but if you are still relapsing at all, you could certainly ask.

It’s definitely worth asking about the Tysabri trials too - you never know, your neuro might know someone who can get you on one (or something else).

Karen x

Hiya,

I am on the trial for Tysabri & SPMS and my first infusion is on Tuesday 15th May. I believe according to my neuro i am one of the first (if not the first) in the UK to start the trial. So i think its going to be a long time till its available for neuros to prescribe as the trial is 2 years then there will be more trials

John

Hello,

Going for an ‘interview’ for Tysabri later this month

Sadly fail this criteria for (interferon beta ‘You must have experienced at least two disabling relapses in the last two years’

Just got to hang on in.

Patrick

There are plenty of anecdotes to suggest ldn can work for SPMS. Check it out at www.ldnresearchtrust.org and if you think it might help.

Hello Whammel,

There is one underlying flaw with LDN, it has not been properly tested as regards MS. Yes there are plenty of annecdotes and personal stories. I take it and it helps with bladder control.

Don’t know what else it helps me with but that is a goiod start

Patrick

Hi, like you I was diagnosed straight away with SPMS (after 12years of gp saying my problems were all caused by my kidney disease), however my neuro thought that as I still seemed to be having some small relapses that I could try Rebif for a while to see if it helped. Apparently (according to my neuro) Rebif can be used for spms if the patient still has the odd relapse. Unfortunately I don’t seem to be getting on with it though as my liver reacted badly and after a month break started again and seem to be getting quite depressed after each injection. Another chat with my ms nurse needed! Good luck in your quest, hope you find some answers! Lilbill x

LDN seems to work for all types of MS so may be worth considering

The Tysabri trials for SPMS are still recruiting - information is easily found on the web. Like you I came straight in as SPMS - my symptoms were so mild before then I dismissed it all. Any relapses I had approx 30 years ago were before any DMDs were available but now (of course!) I wonder if I should’ve pursued any therapy over the last 15 or so years since DMDs became available.

Like many others I take LDN. It is worth looking at the videos from MS Life that appear elsewhere on the MS Society website as some of them discuss the current status of research.

Sorry to hear about your diagnosis - but you will find support on these pages.

Best wishes

B x

morning, sorry to hear about you’re DX, I myself went straight in at SPMS, and like you was to late for DMD, I just take the norm, gabepentine, baclofen, betahistine, and drink macrogol, so it’s nice to read some of the replies, and hope that something comes from these trails, take good care, and try to keep positive, Jean x

p.s and to be fair I’m not doing too bad

To be fair I seem to be allergic to most of the medication. I have Bowen Therapy every week at the Marjorie Collins Centre in Chadwell heath. It’s an alternative therapy and it works for me. I have had SPMS for about 10 years now. I don’t mean it can cure me but it stops the pain I get especially in 1 leg. I’m told he can help incontinence too which I now have.

l went straight into SPMS - 30 yrs ago. So its just one big relapse - as l do not have remittance. Started taking ldn 4yrs ago and wished l had known about it years ago. lts helped me enourmously. Physically and mentally. lts not a cure - but it certainly helps me cope with my symptoms better. And l have not progressed since starting on it.

All other meds leave me in a zombie - fuddled state. With ldn l feel bright and alert.

F.

Hi Flowerpot,

I too have SMPS now (diagnosis has been a bit vague). I have tried Mitoxantrone for this which was fantastic for the first 2 - 2.5 years. It got me walking and moving much better after a really bad wheelchair-bound spell. It’s not licensed in this country for MS but is as a chemo drug. It’s pretty toxic and apparantly has a high risk of leukemia so its not an easy choice. I found I felt tired and sick for a couple of days after each treatment - every 3 - 6 months. It’s up to your consultant if they put you forward for it or not. As I say it worked for me but now 3 years later the MS is rearing its ugly head again. I’ve now been put forward for the Tysabri trial which I’m thinking about, despite the high risk of PML. there’s no easy choice it seems

Ask about it and see what the advice is. Best of luck,

Steffy

Steffy

I agree there are no easy choices but would disagree that much of the choice is down to your consultant. All doctors within the NHS are controlled by what their PCT will allow them to prescribe. In our area the NHS will not fund Mitoxantrone for MS,. They will not fund Sativex camparth or LDN either.

This does not mean if you live in this area these choices are not available but it does mean if you want them you have to fund them yourself. Tysabrie is funded but as in most places it is only offered to approximately 1% of people diagnosed with MS.

This is why many people who are prepared to take responsibility for their own health choose diet, LDN and treatment for CCSVI if they can afford it.

It is very important we realise what our doctors can offer is controlled much more by money and politics that science and it varies from PCT tot PCT.

The key reason it is important to understand that is that doctors generally only offer the things their particular PCT will fund. If therefore you had lived in this are you would not have been offered Mitoxantrone.so unless you had done your own research you would not even have been told about it.

There appears to be quite a bit of confusion and misleading information in this response.

LDN and CCSVI cannot be compared to Mitoxantrone or Campath. LDN and CCSVI are both unproven treatments for MS, Mitox and Campath have been subject to rigorous and scientific trials. The jury is out as to whether MS can be controlled by diet.

I am no expert but I suspect the main reason why Tysabri isn’t routinely offered is that the risks and benefits of prescribing it have to be carefully evaluated for each individual. For a lot of people drugs like Rebif are a better option.

The poster is right in one respect; funding will influence which drugs a PCT will authorise it’s doctors to prescribe.

Hi Steffy

I am on the Tysabri trial in SPMS at the QE in Birmingham, If you get the chance go for it, the PML risk is far lower than the leukemia risk you took with Mitox

John