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How to make a decision on treatments

I need some help or at least I am very interested in some more opinions.

I was diagnosed back in May last year and have not had another episode since, although I have been struggling with dizziness and fatigue and very scarily I have had 25 days off from sick since then due to infection or symptoms.

I have been referred to another neurologist because they have more treatments available than my original hospital. I have recently had another MRI scan so they can see how active my MS is now.

My question is how did you make your decision about being on treatment or not being on treatment?

I am finding it an impossible decision, it seems that ever question I ask a professional I don’t get a yes or no answer. I understand that its not black and white and there are lots of things to consider but I don’t know how to come to a decision.

I have an Aunty that was diagnosed in her 20’s and in that day and age there was no treatment. She is now 83 and has only been in a wheelchair for 7 years following a fall and a broken leg. I know that doesn’t mean that my MS will take the same route.

When I was first diagnosed one of my first questions was “Can this illness kill me?” and the answer I got is part of the reason I am writing this… “MS won’t kill you but the treatments can.” Since doing research I understand how dramatic that statement was and perhaps not factual.

So I am asking myself an impossible question.

  1. I don’t want to end up in hospital in years to come dying of something caused by my immune system being damaged by drugs.

  2. I don’t want my MS to deteriorate and end up wishing I had taken drugs to slow it down.

Any help that anyone could offer me would really help, I know you can’t make this decision for me but if I can’t ask here where can I ask?

Hi, The following page may help MS Decisions on the MS Trust website. It has an interactive tool to compare and select drugs.

I’m on Tecfidera and it’s my first DMD, been on it a year, it’s tablets twice a day. I’ve not had any problems so far with it.

I decided to go for a DMD as I have active MS. I wish I had started sooner as I had an infection over a year ago. The infection meant I had to crawl around my flat, it was very painful to stand, UTI and then sore throat. I got antibiotics on day 10, far too late - problems at GP surgery with getting urine sent off to lab and tested for infection. My legs have ached since then and not recovered fully.

I do wonder if I had been on a DMD sooner and at that same time as I had that infection, would I be in a better physical condition today? We will never know.

I make it easy for you:

take tecfidera.

To expand upon this a little:

it is the best first line drug out there; it is convenient; has few, minor side effects (for most); it doesn’t require needles and thus additional discomfort / complications.

To ease fears of death from tecfidera:

i have likened taking it to getting hit by a bus. many may people cross the road every day; a tiny percentage end up dead because of it. those who keep their eyes open will survive long and happily. tecfidera (and others) compromise your immune system. it has NOT been directly implicated in anyone dying, but two or three people did get poorly whilst taking it AND several other drugs. if you are on tecfidera, you will be having regular blood tests. aka eyes open.

the benefits far exceed the risks.

DMDs are an investment. they are not a cure. they are not a guarantee. you will never know how effective they were / are in keeping your life unimpacted by MS. you simply take them to improve your odds of staying out of that wheelchair. and so by this exact same mentality, you might look to amend your diet (no more beef for example), increase your vitamin supplements (D and B12 for example) and address any behavioural traits (stressing over the small stuff for example).

finally, the biggest burden of MS is the uncertainty. you CANNOT look to the experiences of anyone else in this entire world, to determine what your likely prognosis is. the disease is as personal as the people enduring it. you will forever have a million questions and sadly, no amount of ‘white coats’ or even other sufferers will provide many answers.

just live your life well; be happy, healthy, optimistic, and try to forget about this MS thing, coz… well… the worst will probably never happen.

the one thing which is for certain: getting on DMDs ASAP will not hurt your chances of a high quality of life for your remainder of days.

good luck!

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The quick answer is that you will never know if you made the wrong decision until it is to late to change it.

When I was told I qualified for a DMD, I had six months to make up my mind before the qualification period lapsed
They were all injectables in those days.
In the six months I had three relapses - then I chose an injectable.

Too late.

My MS developed rapidly, doing from first Dx in late 2008, to SPMS by 2014. This also means being able to walk with out an aid in 2008 to needing a rollator and an FES to shuffle around with in 2014. EDSS 1.5 to EDSS 6.5 in the same period.
Will I ever know if an earlier decision would have slowed the progression? No!
Do I think so? Yes!

What you must not do is pay much attention to certain American forums and web-sites that are all doom and gloom, and all about the evil doctors who are in the pay of the evil pharmaceutical companies. Then ignore all those who have “found” a cure.
The first person who finds a cure will make a small fortune (if not a large one).
If one person really does know how to cure MS, then all the other cure are just plain wrong. But no-one knows which is the right one.

What you are doing with a DMD is playing the odds that taking it will maintain your quality of life for a lot longer. How much longer? That is why it is your decision, and no-one else’s.
There is some agreement that earlier treatment is better. So what you do is to compare the offered meds and see if you can live with the side effects (if any, you may not get any), then decide if you like the odds.

Geoff

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One of the best sources of information is the Barts MS blog. From reading the blog I get the impression that they want to hit MS hard with DMDs like Lemtrada which is I believe the most effective - but does it carry the most risk of problems ? Probably but I think it is still low.

I am in Limbo but if I am diagnosed with RRMS it is Lemtrada I want. I say that because I am 50 and my children are independant now. If I was in my 20s with a young family and my MS was very mild then I would chose tecfidera. If it were more active then I would go with Lemtrada.

Moyna x

To add my twopennorth to the discussion, I have taken several DMDs and have had some side effects from most that have ended with my coming off the treatment. So as follows:

  1. Avonex - Summer 2002 (4months)

I was diagnosed in 2002 and at that time only the 4 injectables were on offer, Avonex, Betaferon, Rebif and Copaxone. I was sent away with several videos, told to make a choice and ended up choosing Avonex because it was once weekly. (Btw there were virtually no MS nurses then, I was pretty much alone with the decision.) I had pretty bad cognitive problems with Avonex but it took me months to explain this to the neurologist because of the cognitive problems. He (Dr Giovannoni who now does the Barts blog mentioned by Moyna) explained that occasionally beta interferon can exacerbate existing MS symptoms and it appeared that the Avonex had caused previously unknown cognitive issues to go bananas (not his exact phrasing but still…) The side effects went away pretty much instantly when I stopped the drug.

  1. Copaxone - early 2003 (5 years)

I had no real side effects from this which is why I took it for several years. Eventually I started relapsing more frequently and decided together with my neurologist to stop. I was considering starting Betaferon and had the blood tests for it but my liver started behaving badly (unexplained hepatitis) so didn’t start it and was instead eventually referred to another neighbouring neurologist who could help with more up to date DMDs.

  1. Tysabri - April 2009 (4 months)

I had to be referred again to Kings Hospital in London for this as it wasn’t available on the South coast where I live. Which accounted for a very long delay in starting. It was very difficult to keep getting to London every month and eventually I decided that there didn’t seem to be sufficient benefits to make the fatigue I was suffering as a result of the travelling worthwhile. In retrospect this may not have been the best decision. No major side effects, apart from severe fatigue each month following the infusion.

No DMD until major relapse in January 2012 made me unable to walk. I can still not walk without an orthotic device or FES plus a walker. Even with these I can only walk a few metres about 3 times a day.

  1. Tysabri - September 2013 (4 months)

I had been trying to get back on a DMD since my big relapse. Eventually my relatively local hospital started running a Tysabri clinic. This time however, the Tysabri gave me hepatitis. It was discovered during the blood tests taken at infusion 4. It took a couple of months to get the liver working properly again.

5 Tecfidera - March 2015 (8 months)

It took some time to get the go ahead for the Tecfidera clinic to be set up, and then to get a space within the clinic as they were having to recruit more staff to administer the new service. I experienced a bit of nausea from the Tecfidera but was pretty much sorted with diet and side effects when it was discovered on my 6 month blood test that I had a big drop in lymphocytes. The blood tests were repeated over the next 2 months while I continued on the drug. Ultimately I had to stop the DMD in November last year. Low lymphocytes does not in itself cause any symptoms but it can leave you open to infections. Over the next few months my lymphocytes should recover.

December 2015 to present

I am still prepared to take another DMD as I still have active relapsing MS. It does not always remit very well these days because I’ve spent so little time on an effective DMD that I am now very disabled. Once my lymphocytes recover, I will be discussing with my neurologist whether there is another DMD that I am eligible to take that will not affect my lymphocytes or liver!

In your position, I would very strongly recommend that you start a DMD. Tecfidera is an excellent first line drug, so I’d consider Paolos advice to be very useful. Have a go of the DMD decision helper tool on the MS Trust website as mentioned by Lenney. When I was diagnosed there were few options and not much in the way of support (see Dr Geoffs reply). You now have a variety of drugs, great support and all the DMDs are well monitored to ensure side effects are dealt with efficiently. The side effects I’ve experienced hopefully demonstrate that whilst there are potential side effects from all the drugs, the ones I’ve taken all have a short half life. This means their effects leave your body fairly quickly and you would have to be very very unlucky and badly monitored to contract a really serious side effect from any of these.

With Lemtrada, it does look like a more effective drug, and is potentially close to being a cure. But it also has potential serious side effects and a longer half life. If you have very active early RRMS, and were otherwise fit and strong then I would consider it. Likewise HSCT. If you have milder MS symptoms, then go for one of the other first line treatments. As you’ve not been on a DMD yet, you wouldn’t normally be eligible for Tysabri. Which would indicate Tecfidera or Gilenya as being the best options as these have the best results and are both oral therapies.

Good luck with your decision making. Hopefully all the above posts will help.

Sue

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I look on DMDs as an insurance policy. For a modest premium (in terms of bother of taking them/risk of taking them) I secure myself against an element of the risk - the large and frightening risk - that uncontrolled RRMS poses to my health and welfare.

My RRMS clearly meant business from day one, and the only DMD available (back in 2000) was Avonex, so my only question was ‘how soon can I start?’ Avonex held the fort for many years, then my MS shifted up a gear and was too strong for it so I upgraded to Tysabri.

If I had known then what I know now, the only thing I would have done differently would be to have admitted sooner that I needed to upgrade - that might have avoided some damage that cannot be undone. Otherwise, I feel that, with the help of the neurologists and MS nurses, I have managed to dodge and weave fairly well. For sure, I’ve lost a lot of ground - no two ways about it - but it could be a whole lot worse.

Put it this way: if I had been told 16 years ago that I would still be getting about (rather sedately, admittedly) under my own steam, I would have been very glad to hear it. Given how my MS behaves given half a chance, there is no way that would have happened without DMDs.

Alison

Hello there, I really feel for you as it is the hardest decision and I do not want to sound flippant about it. I was diagnosed 7 years ago and have not started dmd as yet. I have had a few MRI’s and the latest one came back with no new lesions and in the past year there is no evidence of ms activity my ms nurse has said. The reason I had the last mri was to assist me in making the decision of dmd but when it came back as no activity it has left me totally unsure now. I know that there can be silent activity but am really trying to understand what is the best thing to do. I think I will meet my ms nurse and get started. It is a very tricky one and I fully understand your thinking.

Mary

Thank you for all of your messages. It is reassuring to speak to people with the same disease as I haven’t until yesterday.

I have spoken to family and it seems so easy for other people not suffering to make this decision.

I have taken all your comments on board and it has definitely helped in making this decision for me.

Thank you again and good luck to you all.

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MRIs are very useful but the variability of the illness remains as baffling as ever.

The greatest concern for us comes from whether symptoms affect our day to day lives. When symptoms can manifest without new lesions being visible, or that new lesions can mean no symptoms are endured, an MRI result has little meaningful value

DMD choice should also be considered with their impact upon our day to day life in mind. If they threaten side effects, illness, risks of death, or almost daily discomfort, such drugs seem pointless if they are for the treatment of a harmless dose of MS.

But today’s wisdom from those in white coats recommends that DMDs be started ASAP.

DMDs are an investment in a future with fewer relapses and thus less disability. Much in the same way as eating fresh fruit and veg, whilst not smoking or drinking too much, also help towards a long and healthy life (although no such thing is ever guaranteed).

For me, my MS is more or less symptom free, but in order to help this remain the case, i have amended my diet, certain lifestyle traits and of course, i have started taking Tecfidera. Luckily for me, the drug didn’t bring with it a list of side effects to manage. It is a strategy currently without any adverse consequences.

When i was considering which DMD (if any), I decided that a wheelchair was likely to be in my future at some point. However, if by taking tecfidera, that time comes in 30 years instead of 20, the answer was an easy one to find.

Good luck, but personally, i think you must be bonkers to not fight this disease with everything at your disposal. Sincerely, why the hell not?

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That is wonderful news. Whatever extra complications it gives you as you consider DMDs or not, it remains wonderful news!

Alison

I am so pleased that you MRI showed no new lesions. I am not sure how active it has been in the past but 7 years seems like a long time and to have this news must have really pleased you. I am waiting for the results of my MRI, which will be the first one I have had since my diagnosis 10 months ago and I am hoping the results will make the decision easier.

Please let us know what you decide - always interesting to hear.

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Sorry in delay in replying, I am so very grateful to all your kind replies and I realise I am very lucky so far. You all have really helped me to really think about DMD’s and I will contact my ns nurse next week to ask for a meeting. I will keep you all posted as to what my decision is and hope that you all continue to be as good as you can be and remain as positive and helpful as ever. Thanks again,

Marydan xx

I agree with Paolo on this. I was diagnosed almost 11 years ago but not offered any treatment at the time except iv steroids when I had my my 1st and second relapses, just 3 months apart. Following that, I was handed back to my gp surgery, who have been fab & just had minor symptoms, mainly numbness & pins and needles every now and again. Luckily for me, my ms has been slow in progression and it wasn’t until this last relapse in Apr 15 that things got significantly worse for me, which also coincided with the new NICE guidelines. If only the new guidelines had come in Apr 14 and I started taking DMD’s then, maybe I wouldnt be suffering the weakness I now have after my relapse. I started Tec in Nov and in Jan this year have changed my diet & I’m now taking a variety of vitamins including vitamin d, which I insisted was checked after my relapse which came back way too low and I was put on a mega dose for 3 months before being tested again. I would definitely recommend those who are newly diagnosed & those not on DMD’s to act quickly as you dont know what could happen next week. I also realise it’s down to personal choice but with regular blood tests, the likelihood of complications due to DMD’s is very very small. Good luck with your choices. Sharon x

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