Can I get your opinions please?

Everyday living
1

Hello everybody,

My dad has recently been diagnosed with relapsing remitting ms.

The consultant thinks he’s probably been misdiagnosed for the last 4-5 years.

He’s now 49. The dr said in his opinion he doesn’t think it will become too debilitating for dad due to his age? However I’m struggling to believe this.

He’s been recommended that if his blood work comes back fine then he should go on Tysabri. He’s also been recommended Lamtrada as another option.

Dad is terrified of the risks these drugs carry but does accept they may be the best option. But because of the risks he is looking at opting for Beta-interferon instead.

Could anyone please tell me of their experiences on any of these treatments so that dad can have more of an idea of how they’ve affected other people before he makes a decision.

Thank you in advance for any help you can give :slight_smile:

2

I am about the same age as your dad, diagnosed late in 2013, and opted for the Beta Interferon (Rebif)… turned down Tysabri in the first instance because I didn’t like the risk of PML and all the hospital visits and blood tests, and that drug scared me. So I went onto Rebif instead, not as potent or as recent as some of the big guns, but I haven’t had a relapse since 2014 when I started it, and have a Rebismart which does most of the hard work for you. (Injecting doobry, you just put a fresh needle in each time, hold it to the injection site and press the button. No worries.) It works for me… but everybody is different with this damn disease, and my experience is no guide to anyone else! My personal way of thinking; go for the lowest risk drug that controls the symptoms, save the big guns for later, when you (or your dad) might need them more. Good luck with the decision making! Oh, and MS is more common in younger people… perhaps if you’re diagnosed younger, the disease has more time to do more damage; so those of us diagnosed later in life stand more of chance of being OK with it?

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3

I am sorry that your dad has been dx with MS.

Most people on Tysabri (me included) take it to control very active RRMS. The idea is exactly (as you put it) to stop it becoming ‘too debilitating’. I have MS that is highly active if given half a chance and has done a lot of damage in the past, some of it permanent, but the Tysabri keeps it in check now and has kept me stable for quite a while now.

Some people start Tysabri because scan evidence suggests that their MS is very active, even if they have got away with it so far on account of the areas of damage in the brain being in relatively harmless places. Maybe your dad is one of them. They are the lucky ones - they have a chance of getting the condition stable before it does too much lasting harm.

The trouble is that, if one’s MS has not yet caused too much mayhem, it is particularly hard to accept the case for going on a drug that comes with real risks. Those of us who learned from bitter experience what uncontrolled MS can do are generally easier to convince.

It does sound from what you have told us that your dad is getting slightly mixed messages - on the one hand he is being told he needs Tysabri and on the other he is being told his MS probably wouldn’t trouble him much anyway. To me, those statements do not sit naturally together. Does your dad have an MS nurse? They can be an excellent source of information and guidance on drug options. Or he might need another chat with the neurologist. In this new world, there is a lot of new information to take in and it takes time to let it settle and be ready to address these kind of big decisions.

Good luck to you, him and the rest of your family.

Alison

4

Hi Belinda

As I think you and your father may have already discovered, one of the main problems with MS is the fact that it is completely different for everybody. They don’t call it the “snowflake disease” for nothing!

Whilst it is perfectly legitimate and accurate for a neurologist to say that, based on general statistics of people with the disease, because someone is diagnosed at a particular age it is more (or less) likely that their condition will progress a particular way. What they cannot do is say that a particular individual will definitely progress in a particular manner.

I was diagnosed as a very similar age to your father (although, like many other people with MS, it is probable that the condition had first manifested itself some considerable time before). My MS is particularly active RRMS and, in my case, although symptoms may measurably diminish after a relapse they do not remit completely. I need support when walking but this varies between needing a single crutch to 2 crutches and, on particularly bad days, I do need to use my scooter. I have cognition problems which resulted in me making the decision to stop driving (I probably could have maintained my driving licence had I wanted to but, after having a couple of bad scares, I made what I considered to be the only safe decision for me). I was medically retired from work in 2015 although I am currently seeking some alternative employment in a less demanding area.

However, I am by no means an example of “this is what IS going to happen” - nobody is. Even the most cursory research on this forum will show people in every possible situation. People with MS can be profoundly physically disabled and confined to bed. Other people with MS can win gold medals. And all human conditions between the two extremes!

Remember, though, that whilst you and your father are complete individuals in a completely individual situation that does not mean that you are alone This site and this forum are fantastic resources. You will find invaluable information and, if you need, shoulders to cry on.

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5

Hi Belinda,

before I tell you about my experience I will offer an opinion. For me it was hard to try and make an informed decision therefore I needed to run the many opposing bits of information past someone who is knowledgeable and experienced in the field of DMDs and MS. I have had experience of several neurologists and only one of them has my confidence. His views and opinions are no guarantee because no 2 people or cases are the same so I still took my decisions based on the balance of probabilities after many discussions and lots of questions. In my opinion it is vital to have confidence and some trust in the discussions and answers / suggestions / statistics you have with your chosen team. If you don’t have sufficient confidence and trust I suggest that you change your team. (easier said than done)

I have a little experience of Tysabri (I was in a trial related to SPMS from 2012-2015) The risks were explained to me and I had a battery of tests to see how much of a risk the statisticians thought I was likely to experience. Eventually they gave me a

1 in xxxx chance of a problem, when other of my circumstances were included the number changed to 1 in yyy. As a techie I decided my threshold number of 1 in zzz . Because I trusted the info I had and the numbers and had confidence in the team I decided to proceed with the Tysabri infusions. Over the 3 year period I experienced no obvious effects (positive or negative)

This may not be the answer that you would like but I hope there is something helpful here.

This forum is a really good source of peoples experiences which sometimes bring clarity and sometimes adds to the confusion !

Good luck

Mick

6

Disease Modifying Drugs are a very individual topic. What is right for one person is not necessarily right for another (although you will find some people who are positively evangelical about the particular drug that they are on.)

Different factors do come into play when choosing which of the drugs offered are best for you. Initially, I was going to be offered Rebif or similar but I was reluctant about this because of my lifestyle at the time (eg I was working regular shifts which made taking very regular medications difficult – added to which my appalling memory meant that I was prone to miss doses).

Tysabri appeared to be the best option for me right from the beginning and I was very relieved/pleased when I changed neurologist and my new neuro turned out to have a very “go in hard, go in quickly” approach to DMDs and she immediately suggested Tysabri.

I have been on Tysabri for 3 years now and, although my existing symptoms have not lessened and I do have occasional “flare ups” or “pseudo-relapses” if I get an infection, I have (touch wood) not had any major relapses since starting.

After about 18 months, I was found to be JCV+. Fortunately, improvements in the blood testing regime, now mean that they can assess how much of the virus one is carrying and they can assess how great is the risk of developing serious side-effects are. In my case, my current load is low enough that the risk of developing PML is almost the same as it would be where I not carrying the virus at all. They keep the situation under very careful monitoring; taking blood for analysis every three infusions and doing a basic screening MRI scan every six months or so.

In my case, I don’t find the regime on Tysabri onerous in any way. I go in to the neuro ward every 28 days. My BP etc checked, I have a very quick medical examination by the registrar and then I am hooked up to the infusion. I sit on a comfy couch reading my Kindle for a couple of hours and then head home stop I am not affected in any way by the infusion and I am perfectly fine afterwards.

New medications do come onto the market relatively regularly - for example Tecfidera (a tablet-based option which has some very vocal supporters here) and Lemtrada were not options available when I started my medication regime. In my case, I still think that I would have opted for Tysabri (at least in the first instance) but, as I keep saying, everybody is different (!!!)

The MS Trust website has some very useful information about DMDs including a decision-making tool that might help your dad clarified his thoughts MS Decisions | MS Trust.

Best wishes to you and your dad as he makes what seems like a very difficult decision at the time you have to make it. Don’t worry he will be fine.

7

There is lots of decent information on the Barts Blog, but the overwhelming view is that the best outcome is achieved by hitting MS hard and early with effective treatment.

http://multiple-sclerosis-research.blogspot.com/2013/06/time-matters-ens-debate-on-early.html

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8

Hi

I have SPMS and have not had any meds.

I have gone downhill a lot recently and my thoughts are I would definitely go on DMDs.

The sooner the better, as early as possible.

There are some good meds out there at the moment.

Some hold things back 60 - 70 % got to be worth a try.

Ronin.

9

Hi Belinda

Full marks to you for doing some research into MS and your Dads drug options. Do bear in mind though, that ultimately he has to make the decision. And when you’ve decided that he should either hit it hard (e.g. go down the Tysabri or Lemtrada routes) or treat it gently (and go for interferon) or of course a third option, a tablet such as Tecfidera, he needs to make the final decision himself.

What might come in handy is the decision aid offered by the MS Trust: MS Decisions aid | MS Trust

Personally I’ve been on lots of different DMDs (and had to come off them for myriad reasons, generally due to side effects, but I am unusual, and the side effects I’ve encountered have often been fairly unusual in themselves). My feeling is, along with many other MSers, that to hit it hard is the best plan. Simply because, with the best will in the world, your fathers doctor cannot predict how MS will treat him over the next few years. At the age of 49 (incidentally my age now), your Dad should have years of decent health ahead of him. To risk a seriously debilitating MS relapse is potentially to jeopardise that good health.

Good luck to you and your father. He’s very fortunate to have you checking all this out and helping him with this godawful disease.

Sue

11

Hello, thank you very much for your reply. It’s been very useful hearing from someone with similar worries and what you decided.

12

Hello. thank you for yor reply. Was very helpful as we hadn’t considered that the location of dad’s areas of activity as being ‘lucky’ areas and this is why he hasn’t suffered too badly (yet). Definitely gave us food for thought! I think it’s a question he’s going to ask his neurologist.

And you raise a good point, he is less convinced because he doesn’t feel too bad with it currently.

He has got an MS nurse, so i think we shall definitely get in touch with her and ask for some more information.

Thanks again.

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13

Hello, thank you for replying.

It is indeed very individual and i think that’s what is so frustrating. As much as it is brilliant hearing about different experiences and other opinions, it’s still no guarantee that dad’s development will follow the same patterns as somebody else. Hopefully he decides on a treatment that for him doesn’t cause too many side effects and does indeed help in the long term.

Best wishes to you.

14

Hiya, thank you for the reply. He is struggling to make an informed decision and does keep looking at statistics of side effects and long term damage in the hope it helps him to decide. He does seem to have a great team behind him, so perhaps we need to make more use of them and ask a few more questions before he makes a final decision.

Best wishes.

15

Thank you for the link to this blog! Shall definitely have a good look at it.

16

Hi, thank you for the reply.

I think because dad hasn’t suffered too badly (yet), with his MS, he doesn’t feel like he needs the harder hitting drugs and is debating the risks they carry. Although he does see the benefit of taking something with a 60-70% chance of holding the bad stuff back!

Good to hear that someone in your position does recommend going on them sooner rather than later.

17

Hiya, thanks for replying.

We shall have a look at the link - thank you!

Dad does see the benefit to hitting it hard and early, but is really concerned by the risks that the drugs carry. He’s very much of the opinion “what if i’m in the small percentage that gets…” and at the moment that outlook is what stops him from making a decision.

Some days he thinks that maybe he’ll carry on as normal and not take anything at all.

Hopefully we can arrange a chat with his nurse too and she can help him clarify a few things.

Thanks again!

18

Hello, thank you for replying.

I think dad is favouring Betaferon at the moment as he doesn’t want to subject himself to the risks of the stronger, more aggressive drugs. He found it positive to learn that you haven’t relapsed in five years. He did doubt the effectiveness of the Betaferon in comparison to the newer ones. But does also realise that although you haven’t relapsed, that doesn’t mean he wil find it as successful.

Thanks again for replying.

20

Hi Belinda,

sorry to hear of your Dad’s diagnosis, but glad that you are looking in to the various treatment options at the earliest possible opportunity. The latest research suggests it’s important to get on a DMD as soon as you can to reduce the frequency of relapses. Relapses = damage = potential disability, so it certainly makes sense to take advantage of the drugs offered.

When I was diagnosed I went straight on to Rebif which is one of the interferons. Injections 3 times a week which soon became routine, and I didn’t suffer any of the usual flu like side effects - that’s the luck of the draw. Best of all, it worked well and I didn’t have any relapses for the first four years.

Then I had two disabling relapses in quick succession and was offered the chance to switch to Tysabri and have been on it 6 years now. I’ve had no relapses in that time so it has worked fantastically well for me. I am lucky to be JCV negative, so the risk of PML is negligible but it’s important to get that checked regularly - it will be as that’s part of the protocol.

But, as others have said, your Dad has had some mixed messages re the potentially “mild” prognosis of the progression of his MS and yet he’s been offered Tysabri off the bat which is usually only prescribed for highly active, aggressive MS. I would certainly be seeking some clarity on that from either the neurologist or MS nurse to enable him to make a more informed choice.

Stay positive. MS is not a walk in the park and you’re all on a steep learning curve at the moment, but it’s great that he has your support. This forum is a wonderful source of info so keep on asking your questions.

I wish you all the very best.

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21

I haven’t read all your replies so forgive me if someone else has mentioned this. I went for Tecfidera which is less risky than Lemtrada and Tysabi but has better statistical results than Beta Interferon which are older drugs. Please do ask your MS nurse about t. Good luck.

trev

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22

It was only a matter of time before i came along (and echoed the Q made by Wib Wob)… i wonder why has no one raised the idea of taking tecfidera?

Tecfidera is essentially ‘Tysabri Light’; Not sure if it works in exactly the same way, but it is made by the same pharmaceutical and carries pretty much the same sort of risks and potentials for side effects, whilst being a market leader in efficacy for reducing both relapse frequency and disability progression.

To address the main point of concern from the original poster… the risk of PML is not something to dismiss, but it is something to keep in perspective.

Recipients of both Tecfidera and Tysabri are regularly tested to ensure that blood cell levels whilst compromised, are not completely ruined. But even if they do become perilously low, that is not a guarantee that the JC virus, which ultimately can cause PML will even arise.

there are many stages to go through from starting a DMD and ending up with PML; all of these stages require worst case scenarios to unfold and for very easily monitored warning signs to be ignored.

it is a metaphor which lacks all sophistication, but taking DMDs is like crossing a busy road… keep aware of the potential hazards and you will continue on your way through life just fine… but choose to ignore the truck barrelling down the street towards you, or worse, refuse to even keep an eye out for such things… well hopefully luck will be on your side :wink:

Good luck and do not worry!

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