What Does DrK think….Practice what you Preach!

Yesterday’s drug delivery, giving six people options where there maybe none…and saving the NHS up to £600,000.

                  Can’t wait for the EMA…Cladribine Ready to Go 

For those Health Care professionals and People with MS who may be interested. 

We have updated our Information concerning off-label cladribine use at BartsHealth.

Barts ms clinical guidance for cladribine from BartsMSBlog

There is also information concerning the subcutaneous Administration of Cladribine

Furthermore people enrolling must sign a consent form and be very clear why they are willing to try cladribine. 

We want the best choices for people in our care. 

These may well be the current MS Pharma produced DMT.

However, at BartsMS we are at least willing to try some thing different when these avenues may not be available. 

The documents above show we are prepared to consider Cladribine as an off-label treatment (as we have done it on a similar individual basis, for example, with Rituximab) in situations where (i) eligibility for licensed DMTs cannot be established, or (ii) pwMS, together with the BartsMS team, make an informed decision in favour of off-label treatment rather than a licensed DMT. 

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  • Hmmm, I would imagine that certain interested parties won't be best pleased by this. 😉
    Well done all.

  • Be careful about offering too many options as the patient may become confused and overwhelmed, therefore not in a position to make good judgement calls.

    Medicine is becoming like Netflix: too many offerings but nothing worthwhile and out of the ordinary.

    • The more options the better IMO as long as the information is given to pwMS so they can make an informed choice with their neurologist.

    • I don't believe that Anon 12:22:00 has MS!

      As well "about offering too many options to the patient may become confused and overwhelmed"?!
      I have MS and I can say that the worst thing in the world is to be offered to you a medication that has only 30% maximum reduction of the annual outbreak rates within 02 years, and that doesn't help you to not progress to SPMS! This rather makes me confused!
      If I can use a powerful drug, that go let me stable (NEDA) probably for a long time, and that I'll not need to spend or make my country spend lots of money to be able to use it, easy to administer and short treatment, I should then have this medication as option offered to me and to all other MSers the planet!
      So CONGRATULATIONS to the DRK, to the MD and for all Barts MS Team for this initiative!
      They have recognition for all that actually has MS in the worldwide, because if they make use of Cladribine to practice this becomes preceding!

      Excuse me MD but I needed to write this because the comment in question can only be leaving someone who works for the pharmaceutical industry, or some old-fashioned doctor, or a frustrated researcher who doesn't have the disease and don't know what it's to have an illness caused by your own immune system and that is eating your brain and your spinal cord …

    • Anon 12.20pm, as a patient myself I don't really agree at all. I realise that not every patient wants to choose between a million different options with complex pros and cons, but that's why we have doctors to help guide the decision making process. Far worse would be to offer patients no choice at all.

      Imagine if NICE had rejected alemtuzumab on cost grounds, and the only highly-effective DMD available on the NHS was natalizumab. Not much cop if you're JC positive, huh? And not much cop if you aren't, but fail natalizumab anyway, and then have nowhere else to turn! Thankfully they approved alemtuzumab.

      Lemtrada vs Tysabri may feel like a confusing decision but frankly it's fantastic to be able to choose between two potent DMDs. Ten years ago we had neither! Now it looks like cladribine works well in a lot of MSers so let's push forward with that too, especially if works as well as Tysabri and Lemtrada with fewer dangerous side effects.

      The tragedy is that PPMS and SPMS patients aren't so 'unlucky' to be burdened with having to choose between numerous highly effective DMDs! I pray their time will come soon.

      And now I look forward to Team G enthusiastically championing the introduction of HSCT on the NHS. Bring on patient choice…! 😉

    • I've got SPMS and I've not had access to any DMT. I often wonder what I would have chosen had these treatments been available when I was diagnosed many years ago. It's wrong to assume that because someone has a different opinion they have a hidden agenda. What I see is early onset pwMS on treatment that don't seem to be NEDA in any way. It upsets me.

    • I dont know….but in those syringes above, i bet some were destined for people with spms and ppms. When a drug cost thousands the cost effectiveness argument fails when it is a few hundred it is different active disease responds to this type of drug and if someone with progressive ms has this then one would expect this to respond. Maybe we can slow loss of hand function.

      We need a trial to show this would you be willing to be involved?

    • Unfortunately, my ship has sailed. I've had so many life threatening co-morbidities it wouldn't be possible. I have not sat on my hands, my DNA is being studied by scientists, but sadly not for MS. I'm not Anon 12:22.

  • I totally agree with Cinara! I feel bad for 12:22 that they would feel overwhelmed. I am also surprised as they seem to be informed enough to be able read (and at least partially understand) the blog and its contents.

    Maybe they don't mean themselves… maybe it's a reference to 'all them others'.

    The thing is with us MSers… we are just like everyone else on this planet… Some are thick, some are smart, some are poorly educated, some are well educated, some are informed and some are not. For those that are not and would be 'overwhelmed', then there is support out there either from health professionals, MS support orgs or other MSers to ensure that an informed choice CAN be made.

    To tell us that we shouldn't have the whole alphabet because that's just too much… just give them the letters D-U-M-B… presumes that, well.. we're all STOOPID.

    This is a fab piece of work and shows that you are doing your best to ensure that patient outcomes are at the heart of your work at Barts! Thanks!

  • I'm really grateful for these comments. Sticking ones head above the parapet always causes mixed responses, but we are trying to make our strategy as transparent as possible, and as MD says put our money where our mouth is. If our abstract to ECTRIMS is accepted we'll be able to discuss our experience against the backdrop of some big satellites hovering through the ExCeL – Hello review committee, are you reading this?

  • This is all a Big Pharma ploy. Neologists like Prof G are being swapped first-class airplane flights by Big Pharma, and they'll want things in return. This blog is a utility of Big Pharma. It's always about DMTs that don't actually benefit MSers because they only work in certain circumstances. Relapses have nothing patho-clinically to do with progression.

    These dugs are expensive and a lot of money is being made by business and clinicians. More importantly, they do not fix MS because we do not know why MS happens. Pure greed is a play here.

    • Your comment makes me angry. My second ever relapse totally crippled my bladder and it never recovered. It only took two relapses to cause significant permanent damage. Relapse damage isn't just some theory. To me it's reality.

      How dare you suggest that stopping relapses isn't a worthwhile goal. I hope you never have to experience the misery of permenant bladder damage at age 27. I may need catheters for the rest of my entire life. It's not trivial. It's soul crushing. And it's only going to get worse.

      If I had been given tysabri sooner I may still have bladder control. Maybe. Maybe not. But there was a window of opportunity and it was missed. Now I am left to deal with the aftermath. I desperately wish I could have tried a proper DMT sooner. It might not stop secondary progression but it might have improved my quality of life in the relapsing phase.

      I think it's totally wrong of you to come onto this blog and smear the few neurologists who dare to open themselves to public comments. I disagree with them on lots of things (eg juat give me HSCT already!!) but the idea that Prof G would secretly give up looking for an MS cure because he got a first class flight to Vancouver insults the intelligence of all of us with MS, not just Prof G.

    • I think you are talking rubbish

      You simply have to read what this post before spouting out this tosh. The drugs being presented here cost in US 32 to 110 dollars a vial in UK 165 pounds a vial is this going to break the bank

      This has nothing to do with progression….I get fed up responding to this.

    • I will clarify this. If ssomeone does not understand i will try different routes to get the ideas why this is wrong but for the ostrich with their head in the sand frankly there is no point.p

      yes there are no treatments available for progressive ms yet but this is not a reason to be negative about what is being done

      Are there treatments for progressive ms…non available yet but to suggest such agents have no value if to

    • Anom 17:34 as well relapse isn't related to progression?! Of course it has!!!
      Obviously a primary for those with RRMS !!! I even had my first very definite relapse with active spinal cord injury in C1 and C2. The difference is that in MS Progressive inflammation is present there yes, just is not very well defined clinically speaking, ie, does not see a clear line between clinical remission and outbreak… What we are doing is research into the causes MS, Charcot design, and in particular Charcot 2 is an example. Studies on Vitamin D deficiency is another example, and studies of MD and MD2 on the plasma cells in the CSF are another example…

      And I personally, for example, I know a guy who's 09 years used the alemtuzumab and is wonderfully well because your neurologist here in Brazil was innovative and daring for a scientifically backward country. I know a guy with SPMS that fingolimod is managing to curb the sharp brain atrophy that it presents. So imagine how Cladribine is administered at the outset is to whom has Progressive MS can definitely change the picture the scenario of MS …

      Anom 17:34 best that you closely follow the publications not bullshitting …
      True science isn't made one hour to another, even for such a complex disease as MS. Understand that we aren't in the "Big Bang" of the Enlightenment Phase, where everything was a "scientific epiphany"…

      And yes, if I can I'll use the Cladribine as soon as possible, as I have already informed enough to know that it is not "trick Big Pharma" but is a reality, is a substance that stops the MS and is what I and other MSers the world we…

      And another: if you think nothing is being done in the setting of ON then participate in clinical trials that are being promoted and are still in need of subscribers. Right here in this space of the blog almost every day they announce research participants need, needing individuals eligible to close the frame. The PROXIMUS test or the test for VSN16R are some of them … because if I could participate in several projects like this, because that's how things really work, but is tested on those who have the disease will never know if it works or not…

    • What is this obsession with the seat upgrade. I fly NY to LN on business – i would not fly coach to LN to advance my project at work. I thank anyone that would fly LN to Vancouver in coach to move forward this cause.

    • If you fly on MS company business then their rules state for transcontinenetal you get business class.

      If we pay for ourselves we travel coach and profG has so many airmiles he can usually upgrade to premium economy. Long legs and power requirment is key…the MD's on the other hand have to fly budget….squeezy jet or Dan dare for us and even have to fly air fungus to go to states with a layover in Dublin becuase we couldnt get flown on a direct flight because of cost…wasting extra 6-8 hours of our time.

  • The more choices and surely as important the research into compounds by qualified professionals the better.

    Would you mind if we ran an article towards this research with the associated materials and linkages back to Barts? Perhaps get some more awareness raised be a good thing?

  • Much talk over availability rather than efficacy. Which brings to mind… BG12! Was supposed to be a wonder drug, hardly mentioned nowadays.

    History will sadly repeat itself.

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