Last reply 4 months ago
How benign is benign? To treat or not?

How benign is benign? Would you ever decide to stop treatment?

I haven’t posted here before, although I’ve sometimes browsed. But now I’m pondering a big question about possibly benign MS: How benign is benign enough to consider stopping treatment – when that treatment has a significant negative impact on your quality of life? I won’t be making any snap decisions, but I’d be very grateful for people’s views to help me think!

Here is the long story: (Apologies, it’s rather long!)

I was diagnosed in 2001 when I was 28. I had three relapses within a year, including optic neuritis, loss of sensation, and some quite bizarre movement difficulties in my right arm and leg. I was living in Germany at the time, where the diagnosis and treatment processes were very efficient, and I was put on Copaxone straight away. (At the time it was difficult to get it in the UK.) They were not terribly upbeat about the prognosis, possibly because of the movement problems, and I was advised to change my career as a classical musician, which I did.

I continued on Copaxone for about 5 years, until I wanted to get pregnant. In that time I had one sensory relapse, but nothing major. I then spent nearly 5 years either pregnant or breastfeeding. All that time I felt absolutely great, as far as MS went. (I think it is established that pregnancy can be positive, and I have since read that extended breastfeeding may actually have an ongoing beneficial effect.) As soon as my second daughter stopped feeding, seven years ago, I had a relapse and asked to go back on treatment. They wouldn’t give me Copaxone again, as I had quite a lot of atrophy from injecting, but put me on Avonex instead.

Avonex has been a trial! After 7 years, I still have quite severe side-effects and I give up the best part of a day every week to sleeping it off. However I’ve counted my blessings as otherwise I’ve been very well. I have only had two relatively minor sensory relapses in the last seven years, and MS only affects me in a minimal way. I have some minor sensory disturbance and loss of strength in my right side – I don’t like to try and do things like open jars (or play the viola). I had an MRI last year, which was free of any new activity. I feel unbelievably lucky to be honest, knowing how MS can affect people.

At my annual review recently, I asked the big question. Could there come any point when they could say that my MS had turned out benign enough to justify stopping treatment? The weekly Avonex days mean that I’m currently losing significant quality of life to the gamble against the future. I guess the point of any treatment is to maximise quality of life. And although my family can step in and help out, I’m still missing out on chunks of my kids’ childhood.

The neuro was slightly surprised, but he said the answer is that they literally don’t know. In light of the fact that I’ve been so lucky so far, the question is a reasonable one. He said that there’s no hard evidence one way or the other to support a decision – I think it will be pretty much down to gut feeling. However he also said that if I stopped treatment, the guidelines may not allow me to change my mind if I were to go on to have a minor sensory relapse – only a fairly disabling one.

So basically, either I have been very lucky to have been treated from the beginning and to have responded to treatment, in which case it may not be a good idea to stop. Or I may have been destined to have a benign disease course anyway, in which case it may not make much difference. Or a mixture to the two. I’m now 45 and have got so far – the future looked rather different at 27.

Incidentally, I think have discounted switching to one of the newer immunosuppressant therapies. I know quite a lot about them now and they make me very nervous, particularly with looking after kids.

I appreciate how lucky I am to have this dilemma at all of course. But it’s still a real dilemma, and it would be very interesting to hear from anyone with any thoughts or similar experience. Thank you for reading – if you made it to the end!!

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4 months ago

I can’t decide for you whether to start treatment or no.

I was daignosed in age 17 didnt know I have MS my parents didnt tell untill I finished uni almost after 5 years
Tried rebef uts terrible i stopped it after short while stopped treatment after that fir 10 years

Im not disabled after 14 years with MS but now I had to begin treatment last month because my brain looks like a mess and I feel uncomfortable around messy stuff :p now I’m 39
I still dont get relabses so often even before treatment.

4 months ago

Hi @jerbil
I am no expert (not even medically trained) but why mess with something when it is going well for you? Your ms doesn’t appear to be active from what you stated but given you still do have the occasional relapse you’re not thinking that you don’t have MS. I understand that Avonex is giving you bad side effects. Have you considered changing DMTs there are so many of them out there now?

I am on Aubagio (not the most effective but I was only given a choice of a few first line treatments) and take a pill daily for 3.5 years and I don’t notice any difference if I do or don’t take it in a day. I did have tummy trouble for the first 2 weeks and did have my hair thin out for a bit (it’s all back now) but I think it is very tolerable and easy to take since it doesn’t affect my life. As for if the DMTs really work…’s a leap of faith.

Good luck with whatever you decide is best for yourself. I hope your good health continues!

4 months ago

Oh. @jerbil , if only there was a black or white answer to your question, you’d know which was the right route for you. Unfortunately, as in life itself, we just don’t know what might happen tomorrow.

Personally, I’ve never liked the term “Benign MS”. MS was diagnosed because it was active, which makes the term a bit of an oxymoron. The most common form of MS is Relapsing Remitting MS (RRMS), which can be treated with Disease Modifying Therapies (DMTs). The periods of remission can last for years.

But MS is hugely unpredictable, which is why your Neuro can’t commit themselves. So, MS is only benign, when it’s not active!?!

It is possible to adopt a non-DMT route, with lifestyle changes, e.g. diet. But, this is no guarantee.

I can appreciate your concerns about DMTs. They come with documented risks. But, life itself comes with all manner of risks, known and not known, foreseeable and unforeseeable, which we try and manage as best we can. At least with DMTs, the risks are known and can be monitored.

You’re right, the underlying issue is quality of life, so that you can be the Mother that you want to be. There’s no denying that a DMT is the only insurance we have against MS, but we’d prefer it not to have a detrimental effect on that quality of life. And, Avonex is having a detrimental effect.

There is now a range of DMTs to choose from. We have many member’s experiences of these here, both good and bad.

So, we have a choice. No DMT or which one? Just like we have a choice when we leave the front door, left or right? We just have to choose the route which we feel is going to give us the best outcome.

4 months ago

@jerbil I think many of us have a similar dilemma, choices as stumbler says. I had forty years between relapses, optic neuritis at 17 and a sensory relapse in my lower body at 57, and I’ve just begun a DMT. So even if they considered I had Benign MS way back when, it became active later on. My kids are grown and I’m older, so my situation is different, as is everyone’s. I’m taking Plegridy, which is interferon injected every 14 days, so I am “out of commission” only two weekends a month, mostly Friday eve and Saturday. I chose to accept treatment because I’m afraid of having another relapse, afraid of what MS is doing silently which will affect my future. Of course if I don’t have any more relapses or lesions, I’ll never know if it was because of the treatment, or just that I wouldn’t have had them anyway.
This is only my opinion about my own situation, but I hope it helps you to see the question from a different angle.

4 months ago

Thank you very much to all of you for your thoughtful replies.

I know there is no easy answer. I guess there may be a bit of wishful thinking involved in the idea that it would be OK to go without treatment altogether. On the other hand, I was struck that the neuro didn’t throw up his hands in horror, so I’m still bearing it in mind.

The thing I’ve been avoiding thinking about too much is the possibility of switching to a DMT with less obvious side effects. A few years ago I was very interested in Fingolimod, and I had the impression that I could have switched to it if I’d really wanted to. However I’ve since been going off the idea for various reasons. (Also I suppose that having responded well to one DMT is no guarantee of continuing to respond to a completely different one, so it may be best not to mess with it.)

Still thinking!

Thank you everyone, keep well!

4 months ago

Oh, I hadn’t heard of Plegridy before. Thanks, @embroideress, I might have to look into that.

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