Last reply 7 months ago
Confused!!

Ok, here’s a question, if you’ve got a good prognosis and you’re apparently handling and managing the MS well, then why the need to suddenly start hitting it with a stronger drug?

I’ve got to have another MRI but regardless of whether there’s any new lesions, they’re suggesting Cladribine and Tec? Something about me being young and in early onset, as in I’ve not had it very long?

Me, I’m just a see what happens kinda person but I think from never having it mentioned before to suddenly take these ones??
I know how people have been on Tec but haven’t heard about the other one before?

Ta muchly 😊

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lilbird
7 months ago

I think the newer thinking is that if you hit it as hard as you can as early as possible it improves your prognosis long term @chezy17 maybe they just want to keep things going this well as long as possible 😊


lilbird
7 months ago

Also, I thought it was only me that used the phrase “ta muchly” πŸ˜‰


chezy17
7 months ago

Haha @ lilbird I’ve used it for years, must be my bit of slang coming out πŸ˜‚πŸ˜‚. See I’ve always gone along with the less impact on my life the better, balancing the juggling of bringing up two munchkins and working. Didn’t want the side effects putting me down rather than the MS?

Guess I’ll look into it all 😊.

Ta muchly 😊


lilbird
7 months ago

Yeah I see where you’re coming from with the less impact theory. I guess I looked at it the opposite way. I chose Lemtrada which is way up there in terms of possible side effects but once I’d sat back & compared them against the possible ms outcomes I decided pretty much anything the Lem threw at me would be much more easily managed than some of the possible scary ms crap. Guess we’re just lucky that there are so many treatment options these days that way hopefully everyone can get access to something that suits them. Oh & you’re most welcome 😊


stumbler
7 months ago

@chezy17 , Disease Modifying Therapies (DMTs) are judged by their effectiveness at reducing the frequency and severity of relapses. Each relapse is capable of causing damage, which may not be recoverable.

Tecfidera and Cladribine, now marketed as Mavenclad, are more efficient treatments, with a better prognosis. These treatments also fit in more easily to your lifestyle, one being oral and the other a periodic infusion.


chezy17
7 months ago

See I tend to think about it the other way, what’s the point in worrying about something that hasn’t happened or may not ever happen. Guess I’ll look into it abit more 😊.

@ stumbler I thought both were tablets? Guess I read an update somewhere that said it was? The Cladribine, seems less likely to cause alot of side affects?


stumbler
7 months ago

@chezy17 , we take out insurance and hope the insured event never happens. Switching to a more effective DMT is a case of trading up to a more effective insurance policy, giving better cover.

You could be right about Cladribine being oral. However, it’s off-label usage so far has been intravenous.


lilbird
7 months ago

I get that, 😊 In general I’m a, “don’t waste time worrying about it coz it might never happen” kind of person. Then suddenly without warning I started to get strange symptoms that lead to a rapid decline in health & ultimately an ms diagnosis. I think this speed was the biggest influence on my decision. Just knowing that I could lose so much so quickly without any forewarning was a pretty big motivator. Wow I really know how to lift the mood don’t I πŸ˜‰ I have improved quite a bit since then so that’s good, quick someone say something light hearted & amusing…. πŸ˜ƒ


chezy17
7 months ago

Yeah, I do get the insurance policy analogy of it but sometimes you never have to cash in on that policy πŸ€”. I do know someone who’s had ms for 40 years, I didn’t know until I got diagnosed and I’m pretty sure she’s in her 80’s now, no medication and is walking around with a cane. Now if I’m hitting my 80’s and that’s about as bad as it gets, I’ll take it 😊.
I’ve had a relapse and yes it annoyed the crap outta of me and I felt rubbish for a month but I’ve no long lasting affects from it that I know of.
I’ll just have to look into it more, it’s not going to happen overnight, MRI first I guess.

Thank you and ta muchly 😊.


stumbler
7 months ago

@chezy17 , you have to do what feels right for you.

The next MRI will allow you to review your strategy, based on the results.

Just never lose your bouncy spirit and zest for life. πŸ˜‰


cameron
7 months ago

I think it’s very hard to take on board the message ‘MS is unpredictable’, if that’s not how you’re feeling – if in your case it DOES seem to be predictable and you feel able to cope with it! I remember one of Jo Brand’s comic monologues, as she was enjoying puffing on a cigarette saying ‘and you won’t necessarily get cancer’. I know it’s not the same thing but do you get my drift? Or put another way, do we pay for a top-end house insurance when we’d much rather spend the money on other things, but knowing that if a disaster happened that policy would save us from a ruined future? I think @stumbler‘s right – probably best to be guided by MRI results and the advice of the neuro team – who, after all, will have seen many, many MSers in your situation. xx


potter
7 months ago

We can hope that we end like your friend that is 80 and walks with a cane. I had a aunt like that but her sister who had MS also ended up in assisted living when she was 32 and died from brain shrinkage when she was 50. Everyone is different when it comes to MS, I figure people who don’t to DMT’s must be gamblers at heart. Potter


chezy17
7 months ago

@ stumbler life’s to short to let it drag you down, I have my moments but you gotta keep going 😊!
@ potter and Cameron no-one knows where they’re gonna be tomorrow let alone in 10 years. I only gamble on 2p machines πŸ˜‚πŸ˜‚! I do get what ya mean about using house insurance but I guess if that were to happen I’d be homeless πŸ™ˆ.

I’m not exactly gambling, I’m on Plegridy and I was on Copaxone so I’ve been on medication since diagnosis and I don’t know how unpredictable it can be. Mine, so far has been predicatable and all sensory relapses that haven’t so far left any permanent damage 🀞 so maybe it is hard for me to see the down side to it all or I think it’s wasted energy to me.

I guess it’s see what the MRI says and I’ll go from there 😊 and maybe find out how people have reacted to the new medication.

I did see a lady come out her appointment with her husband and she had what I presume is footdrop but you know what, she was smiling and laughing away…that is how I want to be 😊😊!


chezy17
7 months ago

Meant do know how unpredictable πŸ™ˆ


lara279
7 months ago

Hey @chezy17! I was diagnosed in November 17 and I have had one mild sensory relapse. I am starting Cladribine as soon as it is available at Kings (so imminently). I am not a negative person in the slightest, I always assume everything will be fine (so imagine my surprise when I was told I had MS!!) but I am also a pragmatist. Unfortunately most people with MS don’t have your friends experience. From my perspective it was about playing the odds, none of us know what will happen but I felt Cladribine was a great option because it is very effective but has few side effects, so in a sense, why wouldn’t you? (was my thinking). I did a lot of research before I settled on this treatment and I would be very happy to chat about my rationale if that would help. Feel free to message me.


chezy17
7 months ago

Hey @lara279

Thank you for that 😊, I’m just reading up about the Cladribine. Until yesterday I’d never really heard of it.
I was diagnosed in 2016, that was my thinking, the less side effects the better.

I do know I don’t want to take Tec, more side effects. I did have to laugh at the side effects of the Cladribine as it included Shingles…haha they diagnosed me with it twice before my MS diagnosis and I’ve had chicken pox 3 timesπŸ˜‚πŸ˜‚πŸ˜‚!

Thank you 😊.


dramaqueen
7 months ago

Ihave had progressive ms for 28 yrs and would have loved to have been given a choice of meds. There has never been anything available. Obviously weigh up the options but as lilbird says hit the disease hard you don’t want brain tissue damaged if it can be prevented. Good luck.


geordie57
7 months ago

Hi @chezy17, I was similar to you. The consultant saw my mri and straight in for lemtrada or tysarbri. I declined and chose Avonex. I’ve had 2 relapses in 7 years both sensory. The first I lost balance . Apparently I had a large load of lesions and the consultant was shocked to see how well I looked. I guess lesions don’t always tell the full story. Luckily I am still doing ok (touch wood) if I get worse I will rethink! I had an mri 4-5 weeks ago and still waiting on letter with results! It really is hard to decide x


chezy17
7 months ago

@geordie57

I think when I got diagonosed, my thinking was it’s not all bad and why hit it with the big guns so to speak, if it didn’t work than there would you go from there?
I had a couple of small lesions on my spine last time, so fingers crossed no changes but it seems to not matter as in your case as 😊.
Other than numbness and tiredness, I’ve been ok with the relapses, this last one affected me the most but I think Flu played a part.

Hope the scan comes back ok, but you’re right it’s hard to decide when you feel ok 😊.
Take care


tracyd
7 months ago

@chezy17

This phase of MS can also be referred to as the ‘only a little bit pregnant’ phase

It’s like that first trimester, where unless someone notices you’ve stopped drinking and smoking and works out something is ‘different’ it goes unnoticed

The thing with MS, is tomorrow thanks to disease activity, you might wake up 6 months pregnant or in labour because some invisible activity that even you didn’t notice no evident ‘relapsing’ until it was there has done significant damage.

Treatment protocol now is to use DMT’s to stop progression before ‘it gets bad enough’ – before disability starts to impact on our lives

You have a friend request, if you need to talk I’m happy to share contact details on PM xx


mermaidia11
7 months ago

Trust your gut and swerve chick, your positive outlook will see you thro is my humble advice. Had it 23 years now and just done a weeks shop!
Go figure
And don’t blight the best years of your life with the munchkins, taking what is basically chemo.

No one knows how these DMD chemo works long term, and I don’t know of ANYONE for which it’s worked for, apart from those with financial gain in saying such

If they knew what they were doing, they’re would be a cure by now. Using a sledgehammer to crack a nut, is not a good strategy in my book.

Get on the yoga and ldn and you will stay grand.

My humble opinion after 25 yrs on the MS train, so don’t shoot me down folks

I just want to make sure u get to New York Chick!

Good luck n trust that gut!
βœ¨πŸ§šπŸ»β€β™€οΈπŸ’‹βœ¨


mmhhpp
7 months ago

If I had a choice I would hit it as hard as I could!
From a now a spms person who has cero access to anything and going down…


mmhhpp
7 months ago

@chezyl17


edgarleroy
7 months ago

I’ve had cladribine – good drug, safe & easy to tolerate. I took antivirals while dosing to prevent viral activation.

Whether to hit MS hard at the first, one guy’s view:


chezy17
7 months ago

@ mermaidia11 Thanks chick 😊. I’m kinda on the lines of your thinking, to me there’s no guarantees that it will ever progress to anything more than it already is 😊.
Being happy and positive is what keeps me going, heck I could be hit by a bus tomorrow, who knows.
Took the munchkins out for another 5 mile trek in the countryside yesterday, had some random sheep photo bomb us…it actually walked passed and looked up at the same time I took the photo, they’re the moments that make me smile and I don’t want more side affects than symptoms from my MS 😊.
Whoop whoop for weekly shop chick, enjoy the little things right 😊.
I will get there, I promise 😊.

I know alot of people will say hit it hard and I understand that, I really do and I’m sorry that alot of people can’t take anything to help with their MS but I got to what’s best for now 😊.

If I was to take something more, it will probably be the Cladribine but I’ll see what my MRI says 😊.

Thanks everyone and keep living your lives, you only get one 😊.

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