Last reply 3 years ago
Decision time… Campath or Tysabri?

Ok heres the basics…I was diagnosed with MS in April. I started getting symptoms back in October, starting with tingling in my legs and my ribs. Whilst this was going on I developed numbness in both hands, once this went I suffered with double vision for about a month. When that started to clear I had problems urinating.
You get the drift right? one relapse after another continously..Ive just got over having the right side of my face and mouth being completely numb, and am now in my 3rd week of having a numb hand and arm (right side).

I have has 2 MRI scans both of which showed big and new areas of inflammation. So between the continuous relapses and the MRI results both these have been suggested as my MS is highly active.

I have looked up the side affects, benifits etc But dont know what to go for. Although I def need a strong treatment. I tested positive for the JCV virus which increases my risk of developing PML with the tysabri, but my white blood cells are good for the campath.
Anyone taking either of these and could offer some advice?

Thanks in advance 🙂

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carolyn22
6 years ago

Hi there, I’ve been on tysabri now for the last 3yrs and I’ve not looked back.Ive only developed 2new lesions in this time and pretty much no relapses.I also tested pos for JC in the last 4months but to be honest the risk of PML was lower than me relapsing if I came off TY so I decided to stay on it.Get all the advise you can,I know nothing about campath so I couldn’t add to that but am sure you’ll make the choice! Good luck x


Becks
6 years ago

all i can say is i’ve had 5 tysabri infusions and pre-TY i was needing steroids every 4-6 mths due to relapses so highly active ms. So far (touch wood) there’s no signs of heading towards another relapse and as a bonus my walking and cognitive function has improved and people say i’m like a new person.

Luckily i’m JC- but should i change to JC+, because i’ve been on azothioprine in the past the risk of PML increases to 1 in 300 so Dr already told me i’d have to stop TY (boo) but whilst i can still have it i would cos its helping me already and i feel the world’s my oyster again

Campath was never given as an option to me so can’t help you with that part of your dilemma – but good luck! x


Anonymous
6 years ago

Thanks both, to be honest the side effects of the tysabri is what is putting me off. Campath is not licensed for MS its currently being trialed and the Dr has said he would recommend one of these as their both stronger than avonex etc, but would say which one he thinks would be better.
We will see I guess, I need to decide soon, but I cant decide whether I want tea or coffee half the time to this decision should be easy (lol).
Thanks again x


Becks
6 years ago

i’ve had no side effects from tysabri at all, only positive changes….hubby said he’d have bashed me over the head if i hadn’t have gone ahead with tysabri for fear of PML as in his eyes i was more likely to get run over going to the hospital for my infusion than developing PML but at the end of the day it wasn’t him choosing to put the stuff into his veins so i can empathise with your dilemma – i just knew my quality of life was pretty pants before i started tysabri and seeing the benefits i’ve received already i would definitly choose it again.

My consultant was pretty candid and told me what he would do in my situation (pre JC virus test) bearing in mind the problems i was having – maybe chat with dr/ms nurse again and try and see if you can pin them down a bit more – i also found emailing people on tysabri helped me in my decision making – can the drug company/their website put you in touch with users of campath the you can contact?????


sian810
6 years ago

Hiya, ive been offered Campath or Fingolimod and to be honest my neuro said he wont bother with Tysabri as it has too many risks. Ihave decided to go with the Campath as it has a 74% of no relapses and 71% of halting the progression of the illness. I looked at it like this 74% is too high a stake not too try. Yes it is unlicensed but it has great prospects. Hope you make your decision soon
Take care x


IANG
6 years ago

HI I HAVE BEEN ON TYSABRI FOR 2 AND A HALF YEARS NOW JC POS AND NO RELAPSES SO FAR THAT EWINGS IT FOR ME.X.


IANG
6 years ago

HI I HAVE BEEN ON TYSABRI FOR 2 AND A HALF YEARS NOW JC POS AND NO RELAPSES SO FAR THAT SWINGS IT FOR ME.X.


MrsB
6 years ago

If you’ve been offered the Campath(mabs), I would go for that. The results so far have been astounding, so much so that when my neuro went to a conference on it, the neuros stood up and cheered. His comment was “using your experience thus far of neurologists, I’m sure you are aware that nothing excites us”.

I’m on tysabri (JC-), and have had about 8 infusions. I’ve had 2 relapses since November, but given I was having 12+ a year then that’s fine with me, I like methylprednisolone anyway! And I’ve been walking sort of normally for short distances for the first time in 3 years, so for me no risk can outweight the benefit!! (yet anyway…)


carolyn22
6 years ago

Well I got my MRI result today and it looks like my Ms is “well” controlled!! To me nothing works like tysabri! No relapses in 2 years wins it for me!!! The risks of PML to me are low in comparison to relapse! With good NHS care I know I will be fine!! Hard choices to make evans3 and sometimes I feel we get conflicting info on all the options available.take your time and research every avenue x


Anonymous
6 years ago

Thanks all for your replies, I appreciate them all. Its good to get opinions from people who are receiving the treatments, rather that just the neuro.
Will update you when the decision has been made…might take a while lol x


rachh
6 years ago

I’ve been on Tysabri 3.5 years and am positive for the JC virus.
I have chosen to continue with Tysabri as it is working well for me. After my last MRI, in February, my neuro told me I had no new lesions and the ones I have haven’t increased in size since my MRI a year ago. I know it’s a hard decision to make and I wish you well which ever meds you choose. xx


siangwilym
6 years ago

I had campath and have been virtually symptom free since the first dose. I’ve got my second coming up in Nov. Really glad I had it. I’ve been doing a blog of what it was like to get it and how it made me feel after etc if it’s any help: http://www.alemtuzumabmsandme.co.uk.
Good luck!
Sian x


smallbrowngirl
6 years ago

Sorry for the late reply. I came back from the hospital today, to have my 11th infusion on Tysabri. Before being diagnosed with MS, I was on a huge dose of steroids for around 2 years and pretty much suffered a shed load of relapses. I was constantly in and out of hospital. But since starting Tysabri my life has completly changed. I don’t read about the side-effects bcos I see little point in digesting that information – I suffer no side effects. I’ve been relapse free since I’ve started and I am too JC positive. But compared to the life I had pre-Tysabri – its a chance that I will take


melanie
4 years ago

I wondered if anyone knows of a blog by someone taking and sharing their experience with Lamtrada was called Campath. I’d appreciate any info you have, thanks


stumbler
4 years ago

This drug is also known as Alemtuzumab. Any UK blogs would need to come from someone involved in the extensive trials held at Cambridge. Other than that, it has only just been approved for use in the UK.

There are some more details of the treatment here:-
http://www.mstrust.org.uk/information/publications/factsheets/alemtuzumab-lemtrada.jsp

Hopefully, one of our international members can help further.


siangwilym
4 years ago

Hi there, I had campath in Nov 2011 and Nov 2012. I blogged about it here: alemtuzumabmsandme.blogspot.co.uk Tge treatment is not pleasant but I’ve had no symptoms since. It is defo worth considering if you’ve been offered it.
I live in Cardiff and was part of a trial.
Goid luck,
Sian x


cazzzzzy
4 years ago

Thanks for sharing this @siangwilym ! … Looks really good, also from what I’ve read it does sound very helpful!

I hope one day they might trial it in PPMS too 🙂

xxx


vasy
4 years ago

Hi @melanie Heirs
Here is the blog of one of the very first Campath trials participants: http://www.davidscampathstory.org/experience.html

Btw, I’m on this drug also, though got my first course only in this March.


finchy
4 years ago

I’ve just come off Tysabri after receiving infusions of the last 30 months. I am pleased to hear that it has been working well for others. The MR feedback that I was getting suggested that whilst I was receiving treatment the lesions were stable. However, I couldn’t ignore the fact that my mobility was continuing to decline and things were getting tougher.

Added to this, I had concerns about headaches which were quite pervasive and lasted throughout the day. Now I have stopped the treatment the headaches appear to have gone away although I am still dealing with declining mobility. I don’t wish to be a party pooper here but in my case, Tysabri seemed to make me an unsufferable person to be around.


melanie
4 years ago

Thanks Vasy, I appreciate your comments. I’m thinking very hard if I am offered Lamtrada, whether to remain on Tysabri instead as I don’t think the process is straightforward, especially as one needs to be totally drug free for a whole year which will mean coming off Tysabri. I hear this could be problematic. Frightening, as the relapses could be very disabling. Let’s see what information arises as I need some more hands on experiences of the transition.

If anyone has any info, please let me know. Kind regards. Melanie


mstanyasmith819
4 years ago

Hi I have had rrms for 18 years now and I am only 35, and I have been on rebif and then Tysabri and I felt great on Tysabri but as you are aware it comes with side effects. I was fine for the first 23 infusions, then I tested JC Virus positive, I don’t have the brain infection as of now, but even that one out of 100 statistic is to high for me so i decided not to take it again but thats a personal decision but also try to get all the info you can… if you read something online I would confirm with the talk to the professionals because there is a lot of scary misleading information out there, and I find this website to be a great place to get answers and opinions from people who have actually been where you are. I have never heard of Campath is that a needle? Right now I am pushing for Gileyna ( the pill ) and I am nervous about going off Tysabri because that is I guess the strongest MS drug out there. In my opinion being as I was on Tysabri and it really does work, its actually fantastic, I would recommend it but i would also ask your neurologist to test for JC Virus every month, because when I got the news that I was JC positive ( just the virus that can lead to the brain infection ) I was scared to my wits end. But Its your decision. I just turned JC positive like 2 weeks ago. So I responded to you because we are almost in the same position , plus I went through this whole decision process 23 months ago but in a nut shell( sorry for rambling ) regardless of the outcome with the JC Virus I would do it all over again.


stumbler
4 years ago

@mstanyasmith819 , here’s some information about the drug, formerly known as Campath:-
http://www.mstrust.org.uk/atoz/alemtuzumab-lemtrada.jsp


sian810
4 years ago

Hiya, I have RRMS and was diagnosed 9 years ago. I started on rebid and was relapse free for 4 years. I then started getting skin reactions so they switched me to avonex. This goes for a start but I then started getting relapse after relapse. So was given a choice of fingolimod (gilenya) or campath. Although campath was not licensed as it was 2012, I chose the campath route. I was never offered tysabri as my neurologist don’t really like its side effects. So I had my first dose of campath for 5 days in October 2012, I had MRI before tx and it showed a tube MS. I was then relapse free for that whole year and was feeling much better in myself. I had another MRI before 2nd 3 day dose in oct 2013 and some of my lesions had gone!! I had 2 nd dose and now nearly another year later I’m still relapse free, I can run more now as before I was like a weeble lol, but as long as I’m well for my kids 12 and 3 then I don’t care ill take that option. I can honestly say it was the best decision I made, I still work as a nurse, so understood the risks more, I still go out with my mates occasionally and I still mess around and be an idiot with my kids. If you want a chat then drop me a line ill be more than happy to share info
Sian x


caterpillar
4 years ago

us-emma
3 years ago

Melanie,

A few of us from the US have traveled to Germany and the UK for Campath/Lemtrada/Alemtuzumab. We have chronicled our journeys on a blog:

lemtrada.blogspot.com

I agree with the others who have taken it. Lemtrada has changed my life. I was starting to give up the fight against this relentless disease when a high JCV Ab titer forced me to stop Tysabri and look for other options.

Prior to this year I was not much into forums or blogs but I am glad I stumbled on the Alemtuzumab research and decided to fight for that option.

I was only looking for the ‘next best thing’ to Tysabri and found something better and got better. I wish more people knew about this option which is why I am so passionate to share my story.

I think if you know something that is close to a cure and keep it under wraps that is selfish! I want to tell everyone! Of course we all have to weigh the risks and benefits in our own lives but a ‘disabled’ life was not one I wanted to have.

I didnt chose this disease but I did happen to chose an effective therapy!

Emma


us-emma
3 years ago

Oh- I always forget something-

My last Tysabri dose was 2-14-14. My first Lemtrada dose was 4-7-14. (or 14/2/14 and 7/4/14 in Europe)

My JCV Ab titer was 2.05 and my years on Tysabri were 6+ and I had prior use of immune suppressants- is- I was at VERY high risk for PML if I stayed on Tysabri.

I did not have to be off other MS therapy for a year- just 6 weeks. The doctors wanted an MRI to screen for PML and then we went ahead with Lemtrada treatment. Another patient had and MRI and Lumbar puncture to rule out PML but I didnt think the LP was necessary. That decision is best for you and your doc to make.

Emma


smallbrowngirl
3 years ago

From september this year, NICE have given the go ahead for Lemtrada to be available on the NHS. I’ve been on tysabri since 2011 and it has done me wonders. But I feel that I need to change to medication that will allow me to work.

When Tysabri is administered, it does weaken the body/mind for a couple of days, at least. And when it’s time to have a top up (4 weeks), again you feel a lot more fatigued.

@melanie, how does your body feel once you’ve had all the infusions? And does your body cope for the whole 12 months?


us-emma
3 years ago

@smallbrowngirl

There is a lot of variability between people. I felt great for about 3 weeks and the a difference kind of fatigue came- it was like hitting a wall. Others have told me it was like pregnancy fatigue on steroids.

We have surmised that a during this period your body is ramping up to build & replace all the cells that Lemtrada killed. It lasts until about your 11th week, or 8 weeks total. Over this 8 weeks the all-consuming fatigue does improve and comes on later in the day, than it just goes away.

There is a ‘benefit’ to this fatigue period, it roughly coincides with the amount of time you need to say away from exposures to kids & others who may be carrying bacteria or viruses you are susceptible to. If you are able to plan to sleep & rest through this period you will do well.

It was hard for me because I didn’t know to expect it after the first few weeks of feeling great! But now that others have gone though this right after me we all ‘caught on’ to what was happening.

I am now in week 20 post my treatment & feel amazing. I have energy I have not had for 5-6 years (diagnosed 11 years ago). I plan so much to do in my days I sometimes can’t get to it all, not for the sake of energy but not enough hours in the day 🙂

I’m still learning how to balance it all. Every weekend now we either host parties at home or travel. I haven’t been this ‘busy’ in years but it is a very good busy.

The blog I’ve mentioned (Lemtrada.blogspot.com) goes over what it has been like winch March of 14 when I decided to pursue Lem, daily blogs through the treatment, then about every 3rd day after that. I have less to blog about now because I’m out doing 🙂

The posts around week 3 about being sick were wrong- now I know it was this immune recovery phase I spoke about before. I need to go in and make a note there. How I was feeling us honest, my conclusions about why are wrong, a Forrest for the trees mistake.

Take care,
Emma


smallbrowngirl
3 years ago

Hi Emma

I was hoping that you could shed some light – and apologies if this was known by most guys on this chat….

I had my appointment with my neurologist a couple weeks back – it was about changing treatments. I started Tysabri back in Sept 2011. It’s now Oct 2014. I’ve had zero relapses and zero side-effects. But I am JCV positive. My MS was really aggressive to begin with and my chat with my neuro was great, he’s an honest guy and has been with me through my horrible ordeal. I said that I would like to start Alemtuzumab. He didn’t say yes or no, he said that bcos my health has been on constant rise, he would prefer me not to start straight onto Alemtuzumab bcos it is such an aggressive treatment. So he said, we’ll start you on Gilenya, we’ll take an MRI before you start and an MRI 6 mths later, and if there has been any activity, then I’ll have no hesitation to put me on Alemtuzumab.

Fair enough – but he also mentioned that the FDA had rejected Alemtuzumab, bcos they said that more tests are needed regarding it’s safety! Is tht true?


smallbrowngirl
3 years ago

FDA in America that is….


us-emma
3 years ago

SBG,

I was JCV Ab + and had been on Tysabri for 6-7 years. I stayed on it because it was the strongest thing out there at the time. I did try Gilenya for 1 year due to PML risk but did horrible- many relapses. This is a common story for people successfully treated on Tysabri. Gilenya simply is not as strong.

In Jan of this year my JCV titer was 2.05 (very vey high). So I was finally ready to let common sense prevail. I took my Feb Tysabri dose while I figured out what to do.

The FDA rejected Lemtrada in Dec 2013. Their beef was clinical trial design. They did not like that the phase 3 compared Lemtrada to an interferon, not placebo. There are many problems with the FDAs position including the commonly held belief that placebo controlled trials are not ethical in an era with many safe tmt options, also there is the ethical question of making patients either inject themselves needlessly (if the were in the control group) or spend hours receiving an IV of nothing.

If that doesn’t make sense let me know I can say if differently. The FDA is currently reconsidering its decision. The ruling is expected in the next 6-8 weeks. They ended up looking really bad in all this as all other developed & underdeveloped countries approved it.

On timing and Gilenya- I was at huge risk for PML- but after my last dose of Ty 14Feb2014 I got my first Lemtrada infusion 7Apr2014.

How was this safe?

My US & German neuros decided if an MRI failed to show any signs of PML I would be in the clear for Lemtrada with no/very low PML risk. Another US patient was in the same position as me. She was treated at Bart’s in the UK following an MRI here. So 4 neuros in 3 countries agreed, if the MRI was clear Lemtrada was safe.

I spoke with her today via phone & she is well. We are both well beyond the time when PML could arise and we both did fine. Her doctor was Dr. Ben Turner at Barts- in case your neuro wants to consult with him. Dr. Gavin Giovanonni (also at Barts)also consulted on her case.

I hope this answers some questions. There is a window for Lemtrada to be Most effective and that is Early. I am 40, the woman treated at Barts is 60- so Lemtrada won’t be curative for us, but if you are younger and have fewer symptoms you have a good shot at a “cure”.

With your history of aggressive disease I would at least try to open the discussion of early Lemtrada treatment, rather than delayed. This is my opinion.

Take care,
Emma


Becks
3 years ago

Since I lasted posted I can update you more on JCV. It doesn’t seem as black and white as you are first led to believe. I was originally JC neg, was on Tysabri a year and on my annual review tested JC azathioprine positive. 6 months of counselling later I decided to remain on Tysabri. A month later I fell pregnant so came off treatment! Post birth I went back onto Tysabri and had another JC test and I tested negative!!!

Biogen have stated that Apparently 5% of people can be intermittently positive. My levels were very low (the tests have been refined from when I originally started on Tysabri so they can give more accurate results) but because I tested positive once for JCV I have to be classified as positive although the risks maybe do not seem as high as someone who is testing positively constantly. If unsure ask your consultant for the actual levels figure if this makes you feel any better/more informed.

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