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What did we decide about drug treatment for SPMS?

Hi folks

I know what you’re thinking, Cannibis! there I’ve said it, no; there was a post several weeks ago where someone asked if there was a drug treatment available yet for SPMS. I’ve looked through the posts but can’t find it, can anyone remember what we decided please?

Thanks for any replies,

Wendy x

Morning.

Sorry to say it but if you are SPMS or PPMS your on the scrap heap like the rest of us.

There is little being done, lets face it why spend the money on us when vast amounts come in from RRMS DMD drugs

Hope the big wigs at the MS society read this.

MORE NEEDS TO BE DONE FOR THE PROGRESSIVE TYPES OF MS.

Mini rant over.

Ronin.

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I agree with Ronin. The answer is NOTHING.

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Hi Wendy, I have progressed from RRMS to SPMS so there’s nothing for me now either. I’ve been reading lots about LDN (Low Dose Naltrexone) & have decided to try it…I’m not expecting miracles but if I don’t try I won’t know, will I?

Rosina x

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Thank you all for your replies, I do know a bit about LDN Rosina and asked my Neuro several years ago, there hadn’t been adequate research on it then but I belive there has now.

My Beta plus nurse said I should ask my Neuro about treatment for SPMS, I think there is something on the horizon that may stop progression although it can’t damage repair. I will let you all know the outcome when I see her which should be quite soon.

Wendy x

Hi Wendy, welcome to SPMS. When you reach this stage there is nothing for us. It’s very much a “thank you and goodnight” situation. This disease has alot to answer for! Sorry it’s not very positive but that is the reality. Linda x

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I decided to try ldn over ten ago and it’s been one of my better decisions. It’s true the drug remains unapproved, but an estimated 100,000 users worldwide isn’t too bad for anecdotal evidence.

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Thanks for that Whammel, I know it doesn’t suit everyone but it’s got to be worth trying.

Wendy x

Good luck Rosina, I’ve been taking it for a year, not keen on the idea of giving it up!

Sonia x

On my last visit to my MS Nurse she told me that I now have SPMS (my Neuro concurred on my last visit to him a couple of months ago). All that we have are symptom treatments for SPMS. I still take an Immunosuppressant (Azathioprine) as well as the various tablets for symptom relief (34 tablets per day!). I asked about Statins for SPMS (I take 40Mg for my chloresterol anyway) but my Neuro said that there’s not enough data available to prompt him to increase my dosage to 80Mg.

Hope this helps

As you are aware we all have our own version of MS and just because the neurotics need to categorize us,it doen’t actually mean anything to you and whatever you have happening.If you think that something they allowed you have in the past did you good,then fight tooth nail and anything you can use to try it again, if you want it.

The drug companies make their money by selling stuff to the PCTs for the newly diagnosed and because it is too difficult to find drugs that help those a few years in they don’t bother. MS drugs are worth £8 - £9 billion globally a year and that is increasing by several hundred thousand each year.

The NHS WORKS FOR YOU

Wb

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Interesting that you mention taking statins for cholestorol. In the latest newsletter I received from my local branch there’s an article about the research into using Simvastatin for treating progressive MS. Apparently it’s been through a small trial and shown promise, but it will need a larger trial before it can be used as a treatment for MS.

Neil

I"m ppms and was prescribed Fampyra by neuro. It really helps.

there is a three year trial of Gilenya on ppms patients. Results due next month.

Hi. Wb, make you right about the phamasutical company’s, about 6 weeks ago I decided after nearly 2 years of taking and injecting lots of stuff, and still going down hill, & feeling worse because the drugs were bunging me up ie, constipation. That I would stop taking everything exept Vit D3 5000iu. See ms nurse last week told her I feel no different without drugs, if anything better for going loo more regular, (sorry) she said ok we shall see how you go till October, but won’t tell anyone because if you say non of the drugs are working, they won’t let you try anything new? Do I won’t to. When someone develops somthing that repairs the damage, rather than just trying to kill the cells that attack it, I will be up for that. Wishfull thinking.

Thank you for your input Dave, I take loads of drugs too, also on the Jenilek diet so very little saturated fat, I’m hoping this will keep progress slow and work like a statin.

Wendy x

Thanks Wb

Wendy x

Thanks John, that’s intersting.

Wendy x

Thank you Squiffy, I’m tempted to do the same,except that Amitriptyline certainly helps with nerve pain and I think (not sure) if Baclofen helps with spasms and stiffness, the spasms seem to come and go whether I’m taking it or not.

Wendy x