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Advice and opinions please re medication

I have has MS for 11 years and two years ago diagnosed with secondary progressive after a massive flair up. Last week I had an appointment with a neurologist I had never seen before, the reason being I am having symptoms every day and just feel I am constantly in a flair up. The consultant said I am not having small flair ups it is that I have damage from my previous flair ups and that is causing symptoms everyday and I will be like this all the time basically. He has said my medications are doing me no good as they are preventative and can not treat damage that has already been caused. I have therefore been advised to slowly reduce the meds. I feel confused and would like to hear from anyone with similar dealings or advice. Many thanks and wishing everyone all the very est.

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Hi Anon, sorry you’ve had this news. Very hard to take.

It is, as far as I know, fairly typical of secondary progressive. It basically becomes like primary progressive and there are no drugs that will slow or halt the progression (at the moment that is… keep in mind that there is loads of research going on right now on both progressive types and new treatments are going to come along).

The drugs which help are for pain, and are usually Pregabalin, Gabapentin, or Amitriptyline.

There is another drug for stiffness … sorry forget name. But surf through the posts on here for more info on drugs.

Also look into LDN. Take a look at the LDN Research Trust website.

For now, try and take it one day at a time. Rest when you’re tired. Sorry there’s not more advice I can give you.

Except, that is, that we are all here for you. I know this board is called Primary Progressive but you are most welcome on here as there really isn’t a difference between our ‘types’ of MS.

We are all here for advice, support and friendship.

I also suggest you post on EL as there are others with secondary progressive who don’t use this board.

Take care hon… keep strong… take it one day at a time.

Pat x

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Hi. I’ve been diagnosed with PPMS and told there are no drugs that will slow or stop the progression of the illness as Pat said, but I take Gabapentin for pain and it is effective for nerve pain, but if I miss a dose (memory isn’t great) I notice my stiffness is much worse too.

I think the drug for stiffness that Pat was trying to find is Baclofen which my neuro said he might give me for that but I already rattle loudly with all my painkillers etc so I’ll think of that if life gets uncomfortable but not yet.

I hope this helps, am no expert only repeating what I was told, but as someone who has posted and been grateful for every reply, I don’t like to read and run.

Take care.

Min x

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What you don’t tend to get told is that there is a cheap generic drug available that can be an effective treatment for any flavour of MS. I have been taking the unapproved low dose naltrexone (via NHS) for over nine years and my only regret is not starting it sooner. Take a look at the anecdotal information at ldnresearchtrust.org and see if you think it might help.

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Thank you to all that have replied and made me feel so much better and not so alone. It’s so good there are lovely people that can be contacted. I hop I can go onto help someone one day. I will look at the sites and meds as mentioned. Your all a real credit to yourselves. X

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I was diagnosed 2 years ago and take no medication. I was given baclofen for spasums, but found it gave me other side effects like drowsiness and my balance got worse, so i only take it when i have bad spasums & cant sleep. I just get on with my day the best way i can now with no medication. I just find that small everyday tasks are getting harder and i need to sit down every 5 mins. Hurry up nervous system repair medication

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Wow, my neuro has told me twice now that there s nothing that can be done for me. I’m being transferred to another neuro closer to home who specializes in ms so I’ll ask him if it’s an option. Thanks I’ll even rattle a little louder if there’s help available. This forum is definitely a hive of information. My neuro’s gonna wish I’d stayed away.

Has the drug improved your symptoms or put you in remission or even slowed the progression? Any of those would be welcome. Take care. Cath x

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Has the drug improved your symptoms or put you in remission or even slowed the progression? Any of those would be welcome. Take care. Cath x

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Oh yes, ldn has made modest improvements to most symptoms and significantly slowed progression, which is pretty remarkable for PPMS. Sadly, it doesn’t work for everyone (what does), but highly unlikely to do any harm and worth trying in my view.

There are an estimated 100,000 people worldwide taking ldn for a variety of conditions, so not too bad for anecdotal evidence.

If your neuro doesn’t fancy the stuff, I understand it is easy and relatively inexpensive to obtain privately. Let me know if you get stuck.

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[/quote]

Oh yes, ldn has made modest improvements to most symptoms and significantly slowed progression, which is pretty remarkable for PPMS. Sadly, it doesn’t work for everyone (what does), but highly unlikely to do any harm and worth trying in my view.

There are an estimated 100,000 people worldwide taking ldn for a variety of conditions, so not too bad for anecdotal evidence.

If your neuro doesn’t fancy the stuff, I understand it is easy and relatively inexpensive to obtain privately. Let me know if you get stuck.

[/quote]

Thanks again, I went to the website and have put that on my list of questions for the neuro when my referral comes through which hopefully won’t be too long. Take care.

Cath

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My neuro mentioned some kind of ‘steroid infusion’ that’s on trial - again he said it was cheap so none of the drug companies were interested. I guess I’ll have to wait for his letter and an MS nurse etc. I thought he said intravenous but to be honest it was all a bit of a blur… I will definitely ask about ldn though. Any improvement would be a bonus right now :slight_smile: and I feel a bit of a wally just knocking back the vit D and hoping for the best!

Sonia x

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Hello Everyone.

I live in the States and I’m new to this forum. I was Dx 4.4.12 with PPMS. After an 8 month stint on Avonex to see if anything would result of it (nothing did…no surprise) I decided to try LDN over my neuro’s reluctance…she wanted me to go on Rituximab. I’ve been very happy with it. I’m currently taking 3mg a day at night before bed.

My question here is actually directed toward whammel:

What dosage are you taking? I ask specifically (this is the funny story segue) because 1 afternoon one of my dogs found my capsules, chewed on the plastic cap, and dislodged it and I’m pretty sure she ate some of the capsules. She’s fine and never showed any adverse reactions. But - between her licking and drooling while gnawing on the pill bottle/cap some of the spilled capusles fastened to each other rather firmly and permanently. So I have had a few nights where I have actually taken 6mg and experienced phenomenal sleep and felt especially energetic the following day.

Yes the capsules are permanently stored out of reach now.

So whammel: if you don’t mind what is your dosage?

Thanks and Best regards.

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I dont know which type of ms i have yet but cant walk atm. Seeing neuro on 31st march and expecting to b told steroids r the only treatment i can have?? Is that right?? Had a yr with no remmision and im confused about it all. Can anybody help please?

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Hi

Unfortunately steroids generally do nothing for pppms, but if your neuro is undecided, he may try steroids, and if they help, could determine whether you have rrms spms or ppms. Should it turn out to be rrms, you may well be offered DMD’s (disease modifying drugs)

If you have neuropathic pain, burning, pins and needles, tingling etc your GP, MS nurse or neuro can prescribe medication to help, normally amitriptyline, gabapentin or pregablin.

Hope this helps a little, let us know how you get on.

Pam x

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Cath, unfortunately you can’t take LDN when you take morphine…it renders the morphine useless.

I stopped LDN a couple of years ago in order to try morphine for pain but I missed the help the LDN gives me so ended up stopping morphine.

LDN helps me with so many things, like Whammel I only wish I’d started it earlier.

Nina xx

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I cant see anything on this site! I am on a mobile phone and its impossible! Ashandrob