Forum

No DMDs now SPMS

I feel I am the most angry MS person right now, and would like your views.

Was dx 2009 as RRMS, and given amitryptaline and pregabaline for nerve pain. Had a couple of appointments with neuro over the years, had at least two steroid phases to treat symptoms, the last being March 2012. March 2013, I requested to see neuro again as symptoms over 12 months had got worse. It was then I was told I am now SPMS and told to go away and keep doing exercises from the physio. Oh and sent a wheelchair to help.

Have progressively got worse (mobility-wise) and this week saw neuro again (on my urgent request) who told me there is no medication I can be given (drug trials ongoing - not releasing to the market yet AND were expensive)! With a final, go away and keep doing your exercises!!!

I feel very abandoned and thnk had I been prescribed some form of meds from the start, then I wouldn’t be in this state right now - maybe a year down the line?!

I have RRMS friends who are all on meds - my neuro even personally delivering meds to their home!!!

Do I kick up a fuss or is that it for me?

Would appreciate your feedback.

Aly x

Hi Aly,

It’s crucial to understand whether you ever would have qualified for DMDs, because not everyone with RRMS does, so unless you are positive you were eligible, yet still not offered them, there would be little point making a fuss.

The usual rule is that you must have had at least two clinically significant relapses in any two-year period to qualify. If you’ve been relapsing less frequently than that, but your friends haven’t, it would explain why they were offered meds, but you weren’t. There are also stipulations about how far you must still be able to walk, to be considered a suitable candidate, so if your walking was VERY badly affected from the start, you might possibly have been turned down because of that. Either way, they’re not dished out to everyone who’s diagnosed, so unless there’s been a clear breach of the prescribing criteria, you won’t have the basis for a formal complaint.

The MS Trust gives a quick summary of the prescribing criteria, here:

http://www.mstrust.org.uk/information/publications/disease-modifying-drug-therapy/beta-interferon-and-glatiramer-acetate.jsp

Make sure you did meet them, before you launch into a complaint.

I’m not sure there’s any proof DMDs delay the point at which somebody moves from RRMS to Secondary Progressive. I think, in the majority of cases, this happens after a number of years, with or without DMDs.

Did the subject of DMDs ever crop up in the past? Were you told clearly you didn’t qualify? Did you ask if you qualified?

Tina

x

Betaferon is approved for use with SPMS as well as RRMS. If you meet the eligibility criteria it might be worth asking.

That’s interesting Val, I didn’t know that Betaferon is approved for SPMS, so thanks for that little gem. Janet x

To be honest it seems I have been very niave in all this. I hadn’t realised you had to ‘qualify’ (like some sort of Olympic trial) for medication assistance. I am totally baffled!!! I brought up the subject of DMDs on several discussions but told then it wouldn’t help. Yes I have had relapses hence steroids twice and forgot to mention Baclofen and Tizanadine haven’t worked. I am going to pursue Val thanks. x

I had steroids after dx, they worked a bit but I still can’t walk properly - 2nd appt with neuro, verdict likely ppms so I get no meds :frowning:

Hoping GP will prescribe LDN as desperate to try something/anything!

It really is horrible feeling like you know so little and there’s nobody just to help/answer questions, you really do have my sympathy on that

Take care

Sonia x

The only time that DMD’s, Tysabri etc will be prescibed for someone who has SPMS is if they are having relapses pn top of the progressive stage as well to try and reduce the relapse rate. There are a number of people on these drugs and I do know that one of our mods, a certain Liz Burns, is on Tysabri for this very reason!

Andy

The trouble with SPMS, is that there really isn’t a lot they can do, apart from giving you drugs to help control your symptoms. And some neuros arn’t keen on doing that. Mine certainly isn’t, i’m left to get on with it as best i can, as are a lot of other PPMS, SPMS suffers i know of. There are other people who can help, such as OT’s and physios,but you only get a certain number of sessions cos there isn’t the money. Also, treatment varies depending on were you live. It’s rubbish though, i know, love Bex xxx

Completely understand your frustration. Like you I wasn’t offered any DMD’s and few years down the line I became secondary rpogressive. It’s difficult not to wonder if they would make a difference had I been offered them. My relapses were mild, certainly not disabling and not too frequent.

Having said that, while the DMDs have proven track record for reducing number of relapses and their severity (albeit by only 30%), their efficacy in preventing disability progression is much less clear. In fact, a large Canadian study from summer last year found that interferons (first line DMDs) did not make any difference compared to placebo. Newer DMDs have better track record but come with serious side effects. Many researchers believe that neurodegeneration is a separate process which starts quite early in the disease and is not affected by the DMDs (these work on inflammation).

So, taking DMDs does not guarantee that you wouldn’t have progressed. Lots of people with MS who have been on DMDs for years had progressed to secondary MS.

If you still have relapses (some people with SPMS do) then you maybe be given a DMD. Otherwise there is nothing on offer. You can try low dose naltrexone. I have been on it for over 2 years, find it helpful but I’m not sure that it has helped with mobility. But you never know, it might work for you.

Best wishes.

Thanks guys for all your comments …

I may well have overreacted after last week’s non-eventful meet with the neuro so I am blaming the HEAT!!!

Oh the joys of an overcast day today and cooler temps, it’s amazing how much better feel.

Aly

Hi, I went straight in at SPMS, diagnosed in 2007. I’ve never had a relapse, just got steadily worse, and I’ve never been offered any drugs. That’s why I’ve followed the self-help route, changing my diet, meditating etc. There’s no magic pill and I personally don’t think there ever will be. I think our poor bodies have suffered the combined effects of pollution, pesticides on our food, hormones, steroids and antibiotics in our meat, dairy and eggs, artificial colours, flavours, sweeteners, preservatives, chemicals in the products we use on our skin and around the house…the list goes on. Is it any wonder that our bodies blew a fuse? However hard we try to live a healthy life, we’re fighting a losing battle. We have MS, others will get cancer, diabetes, strokes, heart disease, Alzheimer’s, obese… They haven’t escaped with good health in today’s world. Very few people do. If you try and live a “pure” life you’re considered a bit of a nut, depriving yourself of all the goodies and conveniences life has to offer. If everything is so good, why is everyone so I’ll? Heather

I totally understand your frustration, my consultant held off for months giving me DMDs, but his point was that its not great to be putting these chemicals in to your body, they may even cause more trouble/illness, so you need to know they are going to be worth it.

Hi Aly,

I’m SP too and I can understand how you feel. We are so conditioned by the efficiency of medical science to expect a pill or regime that will help us that it is a very lonely feeling to discover that there’s nothing!

I was dx many years ago and never met the criteria for dmd as these became available so I’ve just chugged on my merry way getting steadily worse.

I think the neuros are just as frustrated which is why they so often come out with asinine remarks like “keep doing your exersizes”! I can totally see why you want to shout at somebody – but I really don’t think that anything would have affected this outcome.

It’s important to put your energies into living your life with MS. Find ways to cope with decreased mobility and fatigue. Try not to feel angry at the MS itself – it’s as much use as shouting into the wind.

Jane

After literally years of asking my specialist after several relapses to put me on DMD’s rather than just a couple of courses of steroids he has now passed me over to another consultant who is putting me on DMD’s as I am now told I meet the criteria which I believe I have for some time. I have a sneaking suspicion this whole lack of meeting the criteria spiel is more about cost than eligibility, as I was told in no uncertain terms that certain drugs were not available to me because they were too expensive.