Last reply 2 years ago
Treatment decisions!?

Hi everyone!

Today I had an appointment with my consultant for diagnostic test results and discussion about treatment. His recommendation was to go for a higher-potency DMT as the current body of evidence supports that approach, but that I need to weigh up the side effects and long-term risks associated with this. Either one of those or Tecfidera, as he described it as the stronger of the lower/mid potency DMTs. When I asked about the low-potency drugs like interferons, he explained that as they have been around a while and they are maybe a bit dated compared to the newer/stronger drugs, he would lean towards the stronger drugs.

My question to you guys is whether your consultants gave you similar or different info? And I wondered why people are on low-potency drugs like interferons, if they aren’t as promising or effective as the newer drugs? Has anyone else started with a high-potency drug as their first treatment? When I first started reading about treatments, I rather naively made the assumption that one might begin with the milder drugs and then escalate as needed?

He has given me a narrowed down list of his recommendations for me to weigh up and choose from: Tecfidera, Lemtrada, Fingolimod, Tysabri and Ocrevus as part of a clinical trial. If anyone has any strong opinions one way or another, or experiences of these, I’d be really keen to hear from you, and how you arrived at your decisions? There’s tonnes of factors/variables that right now I just can’t make clear sense of, to make a decision!

Thanks!

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vixen
2 years ago

Hi there. What a difference it makes depending on where you live. My hospital were really quick with introducing the idea of DMTs. But neither Nero nor nurse would make the call or a recommendation; it had to be my own decision. As it happens, I went for Tec, which I felt would fit better with my lifestyle. And it’s done just that; I was very lucky and didn’t get any side effects, and have been on it for seven months now.

So all good for now, but I’m sure at some point there will be a change for one reason or another. I would be very interested to see how Ocrevus goes in the next few years.

Lots of luck. The good thing is, that 15 years ago, none of these options would have been available to us at all, so things are looking up in the murky, grey world of MS. Let the fight back begin 🙂 x


stumbler
2 years ago

@srh90 , you have a proactive Neuro, rather than a conservative one.

MS is a progressive, degenerative condition, whichever variant of MS you have been diagnosed with. Each relapse is creating potentially irreversible damage to your brain and/or Central Nervous System (CNS), which is best avoided. The expression “time is brain” is used to reinforce the message.

So, yes, hit it powerfully and hit it quickly. But, you also need to consider how the treatment will fit into your lifestyle. Whether you would prefer daily tablets, monthly infusions or periodic infusions. But, more importantly, whether it fits with your life plans and whether you have any maternal plans.

So, a bit to consider………….


bok2bjan
2 years ago

Hi – @shr90 – I began treatment 10 years ago, so there weren’t these choices. But I only was on them a few months. I couldn’t handle the injections, so quit all together. I’m therefore not the best to answer this – BUT – speaking with my neurologist recently about Ocrevus – a drug she had hoped I would qualify for (SPMS) – we discussed the side effects of these stronger drugs. I always felt that due to there not being conclusive evidence that a redunction in relapses, reduces ultimate disability – that if the side effects are significant – it’s not worth the risk. The risk vs reward issue really needs to be looked at.

Seems to me, these drugs are being so aggressively pushed anymore – and patients are lead to believe their use will prevent future disability. I’m afraid that just hasn’t been proven! The actual process by which the background damage progresses in patients with MS – is a mystery. Those with a multitude of lesions can end up with very little ultimate disability and those with very few, and limited relapses – go on to develop severe disability.

Also – regardless of DMD use, after 10 or more years, a large majority of MS patients will develop SPMS. So you really do need to research the potential negative side effects of these drugs. I would not chose to take them. It’s not like cancer – where we have a stronger correlation between taking a chemo drug/radiation – leads to a statistically significant positive effect. MS is just not as well understood.

I wish you the best making this decision. My strongest counsel is to do your research. Read the literature. At least you’ll be making an informed decision. I have SPMS after almost 20 years with this disease. I didn’t have a terrible time with it, but am getting progressively worse. I don’t regret not taking the drugs at all. I have enough other health concerns – so I would hate to have to worry about the cumulative influence of the strong immunological manipulation.

Blessings to you, Jan


Anonymous
2 years ago

Hi srh90, I can share my experience with you and then you can use it how you wish. I was started on an injectable (Glatopa 20ml. daily). Glatopa is the generic for Copaxone, both of which are DMT. I then transitioned over to Copaxone 40ml. 3x’s weekly. After 6 months, I really started struggling with giving myself injections, even though my repeat MRI’s showed no change in lesion growth. After consulting my Neurologist, we decided on Techfidera 2 capsules 12 hours apart. This drug came out in 2013, so it’s relatively new, but there is enough data available to determine with some specificity it’s efficacy, as well as the side-effects. For myself, I only had a little flushing for the first few weeks. Taking it with food and possibly a low-dose aspirin is said to mitigate this side effect. Now, I don’t need to take it with food. I just need to remember that it’s important to take every 12 hours. The Neurologist emphasized this point. There are more severe potential side-effects that are possibly fatal (PML), but the risk is considered very minimal. Now, Ocrevus I think, is a twice a year infusion you get at a clinic. From what I’ve read, Ocrevus is a potential “game-changer” when it comes to treating MS and is the only treatment that has been shown to be effective in treating PPMS. It is also indicated for RRMS. It is brand new and therefor, not as much data out there.

So, there you go. Chew on that a little bit, sit with your family and Dr. and make the choice that YOU think is right for YOU. Good Luck to you!!!


Anonymous
2 years ago

Wow! Just visited your profile! We have very similar backgrounds, with vey different timelines! If I was in your position and entering grad school, I would definitely utilize your Profs. in the department as much as possible! You are in a unique position to gain some insight and perhaps educate your peers about MS!


cameron
2 years ago

@stumbler makes the critical points. Your neuro is up to speed on what’s going on and the fine balance of risk-benefit as evidenced from clinical practice and global research. One thing you may not have considered is how you will be monitored. The stronger the drug, the more checks and balances are in place to minimise risk. Apart from the tests themselves (bloods, MRIs and possibly others), the process puts you in close, frequent contact with the MS team. This means you’ll be having regular conversations about all aspects of your MS – and (in my opinion and in my own case), this should give you peace of mind. Instead of fretting about symptoms, you contact the team. Your decision now about which drug may anyway not be a once-and-for-all choice: if a change of drug is appropriate to your needs you’ll be guided. It sounds to me as though you can put your trust in your neuro: perhaps go with guidance about which strength and then narrow it down yourself to which seems best within that category. Just my thoughts.


nutshell88
2 years ago

Ive seen several neurologist in several countries.
One in Saudi day year i was daignosed he said nothing because i was young 17 and i remained 5 yrs without getting symptoms or knowing i even have MS my parents agreed with dr.
2010 US prof in NYU said I will be bed bound in end of 2011 if i didnt take tysapri i cried and hated all treatments till today.
Other saudi dr told me in 2010 to have intercerron i did have and hated side effects i became at uni and they were disturbing hehe.
Other saudi woman dr says interferon now after 14 years and she insist nothing but interferron
A dr in Edinburgh scotland she was a woman said gylina and i promised her to have it slept in and missed the appointment my gd luck next year ssaid tecfidera i took it to my flat but never took more than 1 tablet and stopped basically all my life off treatments my symptoms aare rare just fatique nbness burning limps in a very mild way im still healthy.

Dont put your life at risk i have atrophy in my brain now and studied in scotland three yrs worked there & work here in my country saudi now too
Its ME VS Ms

I doint need posions between owened by companies as long as im fine
You be careful and optimistic MS never harrass you if you didnt harrass him by over worry 😉


californiadreamin
2 years ago

This is a question I think a lot about and its a question thats never a final answer. Even if you chose a DMT today you have to be thinking about what will cause you to make a change in the future.

Here is a video from a very solid MS center in the US (consider taking the 3 hours, yes its 3 hours long) and just watching it:

Here is the ICER arcticle probably approaching a year old (a lot changes in a year) but its the best overall comparison there is that I know of (since most of these drugs have no side by side comparisons). Remember all these drugs are of different ages but all relatively new so you cant compare the numbers easily. Many people with advanced MS went on first line drugs when they first came out so the populations taking say Tecfidera are different then the populations that took Copaxane when it first came out:
https://icer-review.org/wp-content/uploads/2016/08/CTAF_MS_Evidence_Report_012617.pdf

Specifically at your age if you are JCV negative you should strongly consider Tysabri. My wife is JCV negative and would have gone with that had I know what we know now. However, we chose Tecfidera and have been happy with that decision. Given all the new drugs in the pipeline I would not choose Gilyena as my first choice today, the reason is that there is a very strong rebound effect in about 10% of the people stopping to take that. Given the new drugs on the horizon, if you wanted to switch, I wouldnt want to take the rebound risk (because you have to let drugs wash out before you can start new ones). In your shoes if I was JCV+ i would take Ocrevus, but thats based on its current safety profile which seems to be improving so far rather then getting worse.

One of the gaps with the dr’s today is they are often looking at whats available now, not what is going to be out in the next 2-3 years.


edgarleroy
2 years ago

I like how your neuro wants to treat you to prevent further damage as much as possible. I didn’t have treatment options in 1985, I’m fairly disabled now. Of your current treatment options, I would go with Ocrevus. Cladribine is my first choice, safe, effective and easy to tolerate.

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