hello! some first Qs about drugs and treatments...

hello! I hope you’re all keeping warm and well as can be, and finding pleasure in the little things.

please forgive my barrage on these forums in recent days, and this possibly crude question. but my first and, as far as I’m aware, only relapse was in sept 2024, and after a few weeks of extremely unpleasant and frightening symptoms (inc. severe fatigue, difficulties walking, leg spasms/lock up, incontinence, strange skin sensations, spasticity…) they have largely subsided. but following recent diagnosis, I’ve started looking into treatments and hoped to get your two cents - whether on the drugs I’ve been researching or otherwise. so far, early favourites include:

plegridy (less effective)

ponvory (more effective)

briumvi, kesimpta, lemtrada, tysabri (highly effective).

for what it’s worth, I was also diagnosed around ten years ago with ankylosing spondylitis. it’s not clear how much this diagnosis may or may not interfere on treatment. whatever thoughts you have would be appreciated - including those on alternative treatments.

wishing you all good weekends,

james

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What are you being offered? For most of us, that will constrain our range of choice more than anything.
For my part, my policy has been to go for the most effective treatment that is available to me given my medical advisors assessment of my MS.

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I’ve yet to see a consultant - the waiting time may be up to a year, I found out yesterday, even after diagnosis.

but I did a fair bit of research and narrowed it down to the preferences above. I think your philosophy sounds eminently sensible, and I’ll look to do the same

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That’s just awful about the waiting time - I’m really sorry.

In your shoes I would be in touch with PALS at your hospital to find out what the heck is going on. Waiting times are generally poor, but for a newly diagnosed person to expect to wait up to a year for a consultation is beyond a joke. At least they might be able to explain what is going on and give you a better understanding. Also, if you haven’t already (but I expect you have) get on first name terms with the consultant’s secretary and call regularly to remind him/her politely that you will drop everything to make a cancellation appointment, day or night. It’s the squeaking hinge gets the oil, I’m afraid, and while it’s no fun making a regular and polite nuisance of yourself, it’s worth a try. Keep notes of your efforts, by the way. It will come in handy when you write to your MP - another thing that is worth a try. I am so sorry that the system is letting you down so badly.

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I was diagnosed in 2018. Back then it was also a 12 month wait on the NHS to see an MS Neuro. I went private and saw the same neuro the following day albeit with much lighter wallet after the event. I then went back into the NHS system and was on my new MS meds a couple of weeks later.

Perhaps an option for you to consider.

Good luck.

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this all brilliant. thank you for this alison - it’s extremely helpful

I’ve had a little luck pushing and I should be seen before summer. a regular polite nuisance I can do, so thank you.

I hope you’ve had better luck with this

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thank you for this - it’s a great shout. I’d wondered about going private, but I’ve been told I now should be seen earlier. it’s a tricky one, so I’ll weigh this one up - many thanks

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Your welcome.

For me personally, the cash outlay in comparison to my potential health outcomes if I had a particularly bad relapse while waiting made it a no brainer.

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Hi James,

Keep posting :slight_smile:

I echo what others have said - if you can go private then I would. Make sure to choose an MS specialist neurologist rather than a general neurologist, and maybe see if you can get recommendations. I’m in West Yorkshire and can recommend someone if you’re anywhere near me :slight_smile:

I found spending £250 on 40 minutes with an MS specialist neurologist privately was money very well spent, for my mental health if nothing else!

You then get fed back into the NHS system for treatment and continuing care.


In terms of drugs, my personal choice was to go on Kesimpta. I agree with @alison100 above - get the most effective drug as early as possible to ward off significant disability for as long as possible.

I can’t remember if I posted this on one of your other threads, but Dr Gavin Giovanni (an MS specialist neurologist at Bart’s in London) has a very good article in his MS Selfie blog about whether to choose treatment or not and how to choose.

Personally I have found the support around taking Kesimpta to be excellent. It is a self injection drug. You take three weekly loading doses, then miss a week, then take it again the following week, then whatever that date was, you take it that date every month.

It looks a bit like a big whiteboard pen. You don’t see the needle. The needle is very small and hurts very little and only for a few seconds.

You do some checks (is it in date / any damage etc), then take the cap off, then push it against your leg, it clicks once to say the needle is going in, then about 10 seconds later it clicks again to say it is nearly done, then you count to ten, take it off your leg, check it again, and put it in the sharps bin.

A medical supplies company delivers it to you, along with a sharps bin (which they take away and replace when full).

You keep the medication in the middle of the fridge.

The first time you do the injection, a nurse comes to explain everything to you, show you what to do and practice with a dummy pen (no needle/ medicine in it), then supervises you doing it with the real pen for the first time. Then they ring you to check how you’ve been, and after the first few doses to make sure you are getting on OK. You can also contact them for up to a year (where I live - may be different for other areas) with any questions about the drug.

You can also have access to an app which has videos of how to self inject, lots of information and support and calendar / reminder function for when to take it. Bit of a gimmick but quite helpful :slight_smile:

Some people feel quite flu-y after the first dose and less so after the second dose; both for about 12-24 hours. I didn’t feel too bad - tired and heavy legs and a bit off. I took some paracetamol and went to bed early. The next day I felt slightly sicky and slightly hot for the morning but fine to work.

The following doses I took it in the evening and had heavy legs and tired but just go to bed and ok the next day.

I like that it’s very convenient, and that I am in control of it.

It’s also possible to travel with Kesimpta. You can take it out of the fridge for up to 7 days and then put it back in the fridge and use it within 7 days after that. I was also told that it’s not the end of the world if you take it a few days late eg if you are away. If you take it late you then adjust the date you take it going forward.

Sorry, I have waffled on (again!).

I hope it’s been helpful. When I was in your position I reduced my anxiety by finding out everything I could, but I realise people deal with things differently.

Go gently

Alison

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I particularly rate Tecfidera. Super easy to take and has kept me relapse free and NEIDA for years.

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thank you, that’s great to know - it’s on my list of favourites

thank you for this thorough and thoughtful response. thank you for the waffle! I’ve looked into private but it’s not anything I can afford at the mo, but I should be seen soon on the NHS - hopefully in the next six weeks.

great to heat about kesimpta too - that’s the drug that’s my early favourite, from research. as it is, a used to take a very similar drug for another condition that seems to have subsided, so the process is very familiar. good news about travel too, as I am a keen explorer and try to get away as much as I can, even just city breaks. a few have rec’d dr. gavin, so I need to take a look into him.

thanks again for all this - it’s a great help

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