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no change in ms

Hello…Met neuro today and he said im the same as the day i was diagnosed 5years ago which is good i suppose but i sure dont feel it.I asked for more baclofen but he said i didnt need it but my spasticity is still there.He did say he will get me on fampridine soon as it will help but i am unsure.What am i to do

Fampridine does not help with spasticity. It is also getting bad press lately.

Hi moyna,i asked for more baclofen but he said i didnt need it.He had suggested fampridine last year but yesterday he said he will get me on it soon.im not too keen on it either but have heard good things about it too.

Jimmy

Have a look at the thread started by johnh titled Fampyra and seizure.

You should be completely comfortable with any new drug treatment you start. It does look like Fampyra helps some people. Some of the improvements are temporary though, and there has been some suggestions that it’s worsened disease progression. In particular, have a look at the link posted by Whammel.

There are other drugs that you can take for spasticity apart from (and alongside) Baclofen. Personally I take 60mg of Baclofen plus 2g of clonazepam per day. Since I started the clonazepam, I’ve dropped the Baclofen from 80mg (which is generally considered to be the maximum dose.

Other people take different drugs for spasticity. Both alongside and instead of Baclofen.

I know that it’s very easy to accept our neurologist is experienced and knowledgeable so if he or she wants to prescribe a drug the temptation is to be a ‘good’ patient and take it. But sometimes it’s not the best drug for the symptom.

Best of luck with it. Living with worsening spasticity is horrible.

Sue

Sue,thanks for the info.ive read them posts and i cannot see a positive post about fampyra and i know myself that it could be detrimental to my well being.A small number of people could have great results but i have read elsewhere about faster disease progression and of terrible effects if its stopped.Ah im confused now as my neuro is really pushing for me to start it now and im not too bad these days tbh…Scary if it doesnt work and if it does work. Thanks sue

Jimmy, just bear in mind that they can’t MAKE you go on a treatment if you don’t want to, they can only suggest it. If your neuro’s being pushy, and seemingly not willing to listen to your worries maybe talk to your MS nurse about their attitude?

Maybe they’re getting kickbacks for every patient they get on Fampyra…

Is talking to the PALS people at your Neuro’s hospital worthwhile? I don’t really know anything about the service so I don’t know if it’s relevant to your situation.

Jelly sundae, my neuro suggested it last year and I was happy to try it but the cost of it changed it for me but things have changed and last week the neur said he is sorting it so I should hear from them soon and never asked was I happy to try it and I’m v.unsure now especially after reading comments here.I’m a lot better this year thanks to tysabri and I’m happy to plod along with my cane.my nurse said I should definitely try fampyra and that’s what makes it difficult too.I’m getting scared now,are they all pushing me on it.

Jimmy

My advice would be “just say no” (standard advice to kids who feel drugs are being pushed on them).

Honestly, Fampyra is just a treatment for symptoms. Like all drugs, if you don’t want it, then you don’t have to have it. Particularly if you are doing well on Tysabri - you may see improvements with spasicity from that.

Your neurologist has to listen to your views on your treatment. If you find it difficult to get him to listen, you might think of taking an articulate friend or relative to the consultation, to help you put your views across.

Sewingchick,i am doing great on tysabri and im noticing a difference and ive only had 4 infusions and i dont want to ruin this recovery with a drug that could make me worse.I asked for a little more baclofen,which i dont mind taking,but neuro said i didnt need it.Ive read nearly all the posts on fampyra here and not many people say good things about it.I will try to stop myself taking it if im called. Thanks

Hi Jimmy

If you’re finding that you’re already seeing good things in your physical condition after only 4 Tysabri infusions, then perhaps you should suggest to your neurologist that you could postpone the decision about Fampyra for another 6 months. In that time, you’ll have settled down with Tysabri and you won’t be trying another new drug in quick succession to the Tysabri. That way, you’ll be absolutely certain what benefits you get from Tysabri, and what (if any) from Fampyra. Trying two new drugs in a relatively short time is always a bad idea. You can never know what is causing either side effects or improvements.

In the meantime, you can continue to investigate the benefits versus the side effects of Fampyra, which means that when you come to make a decision about it, you’ll be armed with all the facts, rather than a knee jerk reaction or a blind acceptance of his recommendation. (Don’t forget, a drug therapy is a recommendation not an order so you can refuse it.)

By the way, what dosage of Baclofen are you taking? If it’s much less than 80mg per day, then you could argue that increasing a bit won’t hurt, unless you already experience side effects of weakness from the dose you are taking. I just found this website which suggests 40-80mg for muscle spasms: http://www.drugs.com/dosage/baclofen.html

Personally I don’t think my dose of 80mg per day caused weakness. I certainly haven’t noticed my muscles getting any stronger since cutting back to 60mg.

Sue

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Hi sue,thats what im thinking,wait and see if this recovery continues with tysabri.I got great results the last infusion,eased my stiffness,walking faster,more energy.Lasted a week though but still a lot better.I dont want to try something new and not know which is causing side effects or improvements like you said.I should get a few months hopefully before i decide.Im on 60mg baclofen at the moment which i like,no side effects.I wouldnt mind an extra 10 or 15mg and see if its better…I must read more into famprya,barts blog and comments here so i will have all the facts armed and ready. Thanks sue, jimmy

[quote=jellysundae]

Jimmy, just bear in mind that they can’t MAKE you go on a treatment if you don’t want to, they can only suggest it. If your neuro’s being pushy, and seemingly not willing to listen to your worries maybe talk to your MS nurse about their attitude?

Maybe they’re getting kickbacks for every patient they get on Fampyra…

Is talking to the PALS people at your Neuro’s hospital worthwhile? I don’t really know anything about the service so I don’t know if it’s relevant to your situat

In the NHS, that’s an emphatic NO. NO kickbacks.

You get one month to try Fampyra and then you have to self fund. That’s if it works…not fair.

Fampyra has been brilliant for me. I wouldn’t go as far as recommending it to others, not without funding.

it doesn’t work for everyone.

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LDN can also be of great help with spasticity. Low Dose Naltrexone.

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Cosgalto,i have heard LDN is great for a lot of things in ms.My gp will not prescribe it so i gotta travel to different doc.I will be asking for it in the future,i will stick with what im taking til then. thanks

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