Hello nice people of the forum, and apologies for being such a feeble poster.
While I’m panicking about whether or not my RRMS is moving on to much-dreaded phase two, I have been wondering why it is that nobody seems to be on more than one DMD? Their mechanisms all seem to be very different, so I can’t see any obvious reason why they would conflict in one’s immune system … is it simply a cost consideration?
I’m a scientific dumbo, but I have read that in modern oncology, a variety of drugs are quite often used to address a cancer. Would be curious if people know.
Hope the heat isn’t too uncomfortable for you folks. Rather hoping for the traditional bout of Wimbledon rain here
That is a serious question linds, so let me try for a serious answer:
1 - Yes, it is cost. With each DMD costing upwards of £10,000 per patient, per year, you can see how fast the cost would mount up.
2 - But, if you took two or more medications, and one worked, how would you know which one?
3 - Then comes the question of interactions. The BNF (the prescriber’s bible) will only list the interaction of drug A with drug B. Until we have people prescribed two DMDs there will be no evidence of any interaction. If they are also on one or more non-DMD medication, it would be anyone’s guess as to what caused the interaction if there was one.
To give you an idea, when I was on Copaxone, I was also on Gabapentin, plus four more for a heart condition. Now, I am not on Copaxone, but the same four heart drugs, plus Gabapentin, plus one for the bladder. and one for muscle spasms. So far, no interactions, but increasing fatigue - tell me which one is responsible and I will think about stopping it. That is the reverse of point 2.
Finally, point 4 - Without a serious trial of two DMDs together, there would not be enough evidence that two DMDs gave a cost effective benefit (and NICE, who rule on these things are primarily concerned with cost/benefits). Then, just to test (trial) each DMD with each other DMD would cost many millions of pounds. No drug company would fund this, just in case their star product was not effective when given with a competitor’s product.
See the problem? The idea might work, but no-one will ever know.
The question should be, why do they prescribe any DMD’s, when even a common cold is still an issue.
My neurologist didn’t even know what an interaction was, many years ago. And looked at me with a smug grin.
The guinea pig phase of my PPMS has gone out the window, when not once has physical therapy & a dietician been offered. I personally chose it myself & have gone from being a cabbage on the sofa. Unable to lift my limbs & walk. To someone getting out & about. The neurologist told me I would never drive again & I didn’t listen. I’m now driving, once again after a mine field of paperwork & in control of my own future. The moment when so called experts became involved, my life as was, started to nose dive. The GP claimed, I had merely a head ache & assumed I just wanted time off work. He’s since retired.
Drink plenty of water, eat fresh fruit, veg, fish & meat. Exercise & snack on nuts. Enjoy a balanced diet & stay away from pot luck medications. You’ll live longer. Some people think taking a cereal bowl of medications every day is the answer. I’ve seen many healthy folks take that route. I wont be joining them.
Maybe I’ll get arrested for trying to live a healthier life, with a terminal problem & lynched by idiots for not letting them rob everything that makes me who I am, because they know someone in high places, who smokes weed.
Get a grip on reality, folks. Stop listening to numpty dumpty & believing a qualification means anything.
i was offered no medication because neuro said ‘it was all in my head’. i had a brill gp who listened to me now retired.
fast forward to now (12 years later)having lived through a huge attack affecting all right side, lost sight in left eye, double incontinence, speech difficulties and cognitive issues. i have carers to assist me with whatever i need help with.
i was bitter and angry because that neuro didnt believe in me. my brill gp never let me be admitted to hosp because i didnt want that. i am a single mum to 4 so care was arranged at home.
so getting one dmd in my book sounds good and i understand geoffs explaination.
i eat healthily. dont smoke, and rarely drink. i enjoyed aerobics for 25+ years and was always active. i lost 5 stone because i couldnt swalllow-i often have spasms in throat BUT i have learned how to manage all this s*** in my own way but need support of others-mainly my new gp but any one person that believes in you will do.
theres a fine line between independence and stupidity-i know cos i frequently pass back n forth that fence!
ms has no cure and nobody knows how u live your life-follow your way!
ellie
who has a qualification but is on the other side now!
Hi Linds, Cancer can also be curable, granted not all cancers but quite a few. As we know MS is not. The drugs used are to ‘control’ & relieve symptoms, they will not cure MS. The treatments for Cancer can be very aggressive, patients are severely compromised for the duration of them, so as well as the cost implications of MS drugs, even if combined they will not achieve a cure & could, make patients even more ill. Tracey xx
Thank you very much for your replies. I don’t think I made it clear that my question was more or less speculative
A lot of very good points and of course the cost counts. We all have to bear in mind that the nation - which includes us, to some extent, though like 50% of the population we are almost certainly net drains on the public purse - is picking up a very large tab fir the help we already get. But there are also different costs.
Research is obviously almost as unfathomably high as the worldwide cost of the successfully endorsed drugs. But designing a trial with existing patients that can identify malign interactions doesn’t seem that hard to imagine. And wouldn’t it be worth a punt for the pharna giants, who are already getting a lot from spending a lot? And wouldn’t it be worth NICE’s while crunching their numbers to decide whether dual treatment was worth the nation’s while?
I’m sorry if this is an annoying train of thought. It just seems that no one has tried, or is researching, this.
There is a question about whether Lemtrada is a cure. Some people have been given Lemtrada early in their disease and have seen improvement and no return to deterioration. When the doctors on the MS Blogspot talked about this, they said you would have to monitor a person for 15 years after they were given Lemtrada. If there is No Evident Disease Activity (their term) in that time, the person is considered cured. Here’s the post talking about this:
On the original question, I think some people are given more than one drug at the same time, in testing. Not the really powerful ones, for the reasons discussed above.