kitty369 03/01/18
Last reply 3 months ago
Help with choice of medication

Hi

I don’t know what to do, I went onto tecfidera in November and it didn’t work out for me, it made me very physically ill and also I had a relapse which I am currently tying to recover from.

I am due to go back to the MS team next week and dicuss further treatment options. I was thinking of lemtrada but I am now terrified as u can’t just stop taking it like tecfidera if u/ I have a bad reaction.

Can anyone advise on a drug that isn’t like tecfidera and that might not make me feel really ill, I really want to get onto a treatment plan but am scared about what to try next and the effects it might have.

Feeling lost ….. and scared I just want to feel better

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sciencegeek
3 months ago

It’s hard to advise without knowing more details of your MS and lifestyle.

Some drugs are only available for highly active MS. Others are more generally available for anyone with RRMS. The MS Society and MS Trust have realy informative websites:

https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/disease-modifying-drugs-ms-decisions/disease-modifying

https://www.mssociety.org.uk/dmts

Personally, I’ve also abandoned Tecfidera and I’m planning to start on Cladribine. Lemtrada seemed too risky for me at this stage of my life and with my current MS symptoms.


stumbler
3 months ago

@kitty369 , no MS treatment is without risk. That’s the nature of the beast.

However, Lemtrada has been used for sometime. Initially in it’s earlier incarnation, Campath , where it was used as a treatment for Leukaemia.

Yes, you can’t stop taking it, but it doesn’t remain in your body for more than a few weeks. It does have a potential side-effect of leaving you with a Thyroid condition, but you have to weigh up this manageable condition to the damage that MS can cause.

Have a read of Tracyd’s blog on this treatment:-

http://www.tracyslemtradajourney.co.uk


kitty369
3 months ago

Thank you u will look at all of this, why do u think lemtrada is too risky?


abbeytagg14
3 months ago

Hey, I was in a similar position myself. I started of on Tecfidera but it wasn’t working for me, I am now on my first year of Lemtrada and it has been working perfectly. There is a chance of a thyroid problem but they do blood tests every month to check that you don’t have a thyroid issue. So I would highly recommend Lemtrada for those who want to start on it.


stumbler
3 months ago

@abbeytagg14 , thanks for such a mature contribution to this topic. 😉


potter
3 months ago

A new drug is suppose to be coming on the market soon that is like Tecfidera with out the stomach problems. I can’t remember the name of it perhaps someone on the forum knows. Potter


shadow14
3 months ago

I have been on gilenya since october had no side effects so far and feel good, tried Capoxone.Aubagio.tecfidera before all failed


londonlad
3 months ago

@kitty369

when i decided on my treatment, i was advised to go with either tysabri or lemtrada.. as my MS was diagnosed as rapidly evolving severe RRMS (think its fancy way to say it was likely to be active)

the big thing with taking tysabri, is the risk of PML and the risks are increased based on something known as your JC status which is whether you have been exposed to a certain virus.

they test you and If yes, and you’re JC + then its unlikely you’ll be started on Tysabri, although its possible, for a short period (a year) and some people continue with JC + status. its all about levels of risk vs reward, and theres a lot about this on the web. in particular Barts blog (http://multiple-sclerosis-research.blogspot.com) .

being JC- it meant that tysabri was a very good option for me.
Yet, i heard lemtrada is too. my deciding factors where that a lot of people (as stumble mentions), get secondary problems, but most are manageable.

However, the thing about lemtrada, is once you start, its not easily changed, whereas, starting tysbari, stopping is always an option. (although that has some complications, as there is a possible rebound effect, so you have to move onto something new). none of this is simple, sadly.

i have (touchwood) been doing very well on Tysabri, so maybe biased, but i have no side effects. the man negative is having to go to hospital once a month (but small inconvenience in the grand scheme of things).

i know a lot of people have done well on lemtrada and it sounds a great options for many.. i just decided to go with tysbari, as the factors worked for me. And I’m glad, Lemtrada will still be an option for me in the future.

If i was starting treatment now, id see if Cladrabine or Ocrevus were options, as they seem to be as effective as Tysbari/Lemtra, and perhaps with less risks. a lot to learn and consider.

i hope your neuro talks you through all the options but do prepare yourself.

as you’ll see. there will be no shortage of people here to offer assistance 🙂

I wish you the best on your decision.


londonlad
3 months ago

this was a useful post i used when comparing.

http://multiple-sclerosis-research.blogspot.com/2014/08/clinicspeak-natalizumab-or-alemtuzumab.html

i would add, that theres many many studies suggesting both are fantastic options.

do let me know if you want any other info. you can add me as a friend


kitty369
3 months ago

Thank u all, loads of useful information here for me to follow up on.

Going to write up a list of pros and cons and see where that takes me. X


strictlysoca
3 months ago

I’ve found fingolimod/gilenya to work for me and I tried my hardest to get Lemtrada. In a way it was a good thing that the neuro would not give it as it meant that I had to try what was on offer while I got a second opinion. If I had my time over I would want Cladirabine but now I’m on fingolimod I won’t stop until it fails as the risk of a rebound is not one I want to take.

No DMT is perfect but my way of looking at it – avoiding active MS and more disability is to me worth risking the side effects


masteryass
3 months ago

I am currently taking what i was told is the latest medication for MS. It is supposed to be a miracle drug from what i have heard. I must admit that i am in a clinical trial at the moment but it does not mean that you can not ask your doctor about it. The drug is called Ocrevus and it is one infusion intravenous (that lasts about 8 hours) every six months. I have done one infusion so far and i have zero side effects.
Note: I did have one tiny allergic reaction during the infusion (a few rashes on my chest) which was quickly resolved with Benadryl.
P.S. I have RRMS type, recently diagnosed….Some 5 months ago….
Hope this helps and if you have any questions do not hesitate to ask


arknat
3 months ago

RRMS here .. Been on Gilenya last 2 years. Have had no relapses since.

My Neuro prefers it this way (status quo) rather than putting me on Lemtrada but will consider it if needed. He did say he has patients who did Lemtrada and that their symptoms were much worse than myself …


arknat
3 months ago

Forgot to mention – I’ve had no side effects whatsoever on Gilenya and is very convenient.


sciencegeek
3 months ago

For me, the risk/benefit analysis didn’t work out in favour of Lemtrada. But it is a highly personal decison.

The risk of thyriod or other secondary autoimmune condition is quite high (up to 60% of peple withing 5 years of the 1st round), and the resolution of the thyroid conditions can be complex in some cases. My MS symptoms are still minor most of the time. I’ve had MS for probably 12-15 years, and it seems to be developing slowly, with pretty luch full recovery between relapses every 2-5 years.

I have 3 young children, am the main earner and have a fairly useless spouse (at the moment – her’s still in denial 18 months after I was diagnsosed and siad he thought I was choosing to make his life difficult by asking him to accommodate my MS symptoms – but that’s another story).

Basically, I came to the conclusion that for me the risk of serious side effects was too high. I also have no one to rely on to look after my children if the recovery from the Lemtrada is slow, and I have to work to support a family.

Cladribine was my next best option for effectiveness, and without the downsides of Lemtrada. So I am going to try that next.

I hope that helps you, seeing how I made my decision in my circumstances.

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