Please could anyone tell me if they have had any benefit from taking any kind of disease modifying drugs whilst in the early stages of secondary progressive MS? I have gone down hill a lot in the past year. A year I was walking badly and doing a few stairs and now I can’t do anything. I am now in a wheel chair with bad leg spasms. I am very keen to know if anyone has any ideas on therapies or drugs which can help. Thank you so much. Jude
My wife has secondary progressive MS and has halted all disease progress with LDN for nearly 10 years now.
Unfortunately since Naltrexone is a cheap out of patent drug it is never likely to be formally tested and licenced for MS.
Cost from about 50P a day if your particular PCT will not fund it on the NHS. Some will some will not.
Hi Jude,
Betaferon is approved for use in SPMS with relapses. I can’t vouch for it as I haven’t tried it but since it has been approved there must have been enough success in clinical trials for it to justified.
As for LDN it is not a DMD. For some people it has offered effective symptom relief for some symptoms but it has not been shown to have any effect on disease progression.
Are you on Baclofen for the leg spasms? That is usually the first drug used to treat them but there others too. Ask your neuro about Betaferon and anti-spasticity drugs and see how you go… Good luck
B
l have had SPMS for 30yrs. The only thing that has helped me is LDN - Sativex - Vitd3/vitb12.
Since being on LDN - 3yrs my symptoms have improved and l have not ‘progressed’. Wish l had known about it years ago.
F.
Hi Jude
SPMS is a bggr, I know my diagnosis came straight in with SPMS.
My neuro discharged me as there was nothing he could do and when I asked if there was anything I could do to help myself, the reply was ‘there is no proven way of dealing with this’
That was 6 years ago now and things are moving on all the time with research and new drug development.
Some people still get relapses with SPMS and their neuros can prescribe DMDs. I don’t.
I try to stay as fit and as healthy as I can. I’m not convinced, personally, by LDN. There is scientific evidence that it can help with symptom control but none that it stops progression. It is worth remembering that progressive MS can plateau all on its own. I’m still waiting…
There is a drug called Fampridine, which can be difficult to get, which may help with walking
Good Luck
Anne
[quote=AnnieB]
Hi Jude
SPMS is a bggr, I know my diagnosis came straight in with SPMS.
My neuro discharged me as there was nothing he could do and when I asked if there was anything I could do to help myself, the reply was ‘there is no proven way of dealing with this’
That was 6 years ago now and things are moving on all the time with research and new drug development.
Some people still get relapses with SPMS and their neuros can prescribe DMDs. I don’t.
I try to stay as fit and as healthy as I can. I’m not convinced, personally, by LDN. There is scientific evidence that it can help with symptom control but none that it stops progression. It is worth remembering that progressive MS can plateau all on its own. I’m still waiting…
There is a drug called Fampridine, which can be difficult to get, which may help with walking
Good Luck
Ann
Hi, You could be talking about me here. Striaght to diagnosis of SPMS no treatment, no physio, no support, and a battle for DLA, Blue Badge, and deteriorating steadily. Discharged by neurologist and no ms nurse. Tried LDN on private prescription but it did nothing for me. Seems we just have to grin and bear it! xx
Hi Jude.
It might be worth asking about clinical trials, although they tend to have a maximum EDSS of 6.5 which is able to walk 10m (20m?) with crutches. I think there are trials going on at the moment for Tysabri and Gilenya as well as some drugs that are still in earlier trials and the early data look pretty good (i.e. they appear to be having an effect).
Other than that, I’m afraid there isn’t anything the medical profession can offer in terms of modifying your MS 
There are things that you can get to help with your symptoms though, e.g. neurophysio and meds, so it is worthwhile being a bit pushy with your GP, MS nurse, neuro and, if necessary, MP.
I’ve always thought that I would try LDN if/when I became SPMS, but a few people that I’ve suggested it to have had bad experiences with it, so I don’t think I’ll be rushing to get it. We’ll see though - nothing ventured and all that and it’s not like there are a lot of proper alternatives yet. On that vein, Hyperbaric Oxygen Treatment (HBOT) might be worth a try. There’s no evidence that it does anything for MS, but there is a wee bit of evidence that it can help with spasticity and maybe bladder. The evidence is pretty ropey, but again, nothing ventured… Why not have a google for a MS Therapy Centre near you. They offer a range of therapies and support as well as HBOT.
Karen x