kitty 10/05/17
Last reply 9 months ago
Confused

Hi, so dont know what to do. Ive known about my Ms over 7 years and only had 2 relapses. Ive also only ever tried 1 drug… Avonex for 6 months and then came off it as I felt it was effecting quality of life. This week Ive found out the results to latest MRI…3 new lesions and enhancement of existing one.

Ive seen a few Neurologists and they all give me the same advise; start treatment ASAP, any treatment as long as Im on treatment. Ive done so well without treatment and kept stable without treatment.. Ive just taken high doses of vitamin D and B12 and tried to stick to low dairy, low red meat diet (sort of trying to stick Professor Jellinek’s OMS diet).

Although I havent had a clinical relapse in over 4 years, this is still considered progression as its radiological (a silent relapse if you like).

Im stuck with trying my luck with a treatment or do nothing. Its not like Im anti medication but I just dont know if its worth taking any medication with only the possibility that it MAY delay the progression of this disease and a certainty that it will have ongoing side effects aswell as damage my kidneys and whatever else.
I feel like its a catch 22.

Ive reduced my work hours after my 2nd relapse. I live alone and support myself. Should I progress with my condition or feel ill regularly due to treatment I wont be able to work. Government benefits will not be enough to cover my rent let alone living expenses.

Help, let me know what treatment youve taken and if its working well for you, or just let me know your thoughts.. thanks guys.

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stumbler
9 months ago

@kitty , oh for a reliable crystal ball! Regrettably, we can’t see the future, we can just see the past.

And, the unwelcome truth from your past is that your MS is continuing to nibble away at your Central Nervous System (CNS). Fortunately, this latest activity hasn’t caused a disabling relapse, but what happens next……….

Each of the Disease Modifying Treatments (DMTs) come with risks, but these are known risks for which you will be closely monitored. There are also now about 12 different DMTs available, from injectables through infusions, to oral.

You’ve tried the natural approach, but this has not prevented your MS progressing. So the question is really one of is the threat of a side effect from a DMT greater or less than the threat of MS giving you a disabling relapse?

And the complication behind this conundrum is that a disabling relapse cannot be undone.

DMTs are a form of insurance for our future. So, do your research, https://support.mstrust.org.uk/file/MSDecisionsWeb.pdf , and see if there is now a treatment that suits your lifestyle.


simone2
9 months ago

Hi, I took copazone for 6 months but stopped due to awful side affects that was over 5 years ago, now I don’t take any meds it was a hard decision, my neurospecialist wasn’t happy with me stoppingDMD but the terrible side effects affected my life so much,I follow a strict diet best bet diet no dairy,gluten and sugar its hard to stick too but I havent had any relapses since starting the diet 5 years ago and feel so much better on the diet, I also take lots of supplements.
email if you want more information
Sue


kitty
9 months ago

Thankyou simone2 (Sue)… Email address ?


kitty
9 months ago

Thanks Stumbler and for the sites.


spunky
9 months ago

Hi
I am on Aubagio and besid s a sore stomach/loose stool for 2 weeks and hair shedding from months 3-6 I have had no other side effects from the drug. BTW all the hair came back and I’ve been on the DMT for over a year now and it very easy to take in pill form once a day.

Best of luck in whatever your decision is.

Spunky


tracyd
9 months ago

@kitty

Feeling good, not having physical relapses is great, but your MRI has shown that your MS is damaging you regardless, it’s causing scar tissue in your brain which when it breaks down causes reduction in brain mass (brain atrophy – which happens naturally – our brains shrink as we get older – a person with MS’s brain will shrink more quickly as those lesions we have accumulated break down)

Lesions happen quietly and steathily in the background until one day it takes a big bite at something important and the damage is so great that physically it manifests as relapse symptoms.

You say 2 relapses in 7 years, but your lesion count is double that.

Whilst not relapsing and feeling awful is classed as a ‘doing really well’ for someone with MS, the accumulation of lesions in the brain and spine tell a very different story ….. it shows the condition is progressing and damaging our brains and spines even if we aren’t physically deteriorating and suffering that we are invisibly ‘rotting away’ from the inside

Living healthy, getting plenty of fresh air, excercise, sunshine, fruits, vegetables and water, all those things that we know we should do just because we are ‘humans’ and that’s what is recommended for us all to just maintain ourselves well. Whatever works for each of us, as long as it’s good for us, but backing that up with a badass DMT is … well it’s our ‘safety net’ our ‘protection’ from MS.

There are many wonderful new DMT’s which can stop the progression in it’s tracks stop more lesions forming. Not all of these treatments require you to regularly inject or infuse or take something each day. All treatments have their side effects (but then so does coffee and tea)

MS uncontrolled has a lot of really nasty ‘side effects’ we call them symptoms and relapses and all sorts names …. but they’re all ‘side effects’ and unlike the ‘possible side effects’ of a treatment the one thing that is absolutely guaranteed is that untreated the ‘side effects of MS’ WILL get worse and what form that worse might be is anyones guess but the side effects of having MS can be pretty devastating.

You have a friend request if you want someone to talk to I’m happy to share contact details.


potter
9 months ago

I had two aunts that had MS before there was any DMT’s. One aunt had it so bad she was in assisted living by the time she was 32. When I was diagnosed ten years ago the first thing I ask was when can I start taking drug treatment. I knew what she had went through before she died at the age of fifty. I was on Rebif for 5 years and I have been on Tecifdera for 4 years. Once I got through my first few months with Tec things have been great. Easy to take, no relapses and blood work comes out good every six months. Potter


simone2
9 months ago

Hi, Kitty, you can send me a private email but not sure how you do it!!


kinga
9 months ago

Just to add that Dr Jelinek does not oppose taking DMTs so perhaps its worth having a go…


californiadreamin
9 months ago

@kitty Just to add that while it may slow progression its important to note the delays are averages. You have every reason to think that if you dont see progression on the MRI it IS in fact slowing progression. Getting an MRI in 6-12 months after the DMT is started is a good way to see if it is in fact working for you. At some point it may stop working and you might need to switch medications, but imaging now gives you the opportuntity to see how well things are going before you experience a relapse in hopefully many situations.

My wife takes Tecfidera and the long term effects are generally monitorable so you have the opportuntity to stop the medication if there are indications of anything going astray and allow your body to recover. Many of the side effects that are more serious were discovered over the years and are now watched for. So going with a medication that has been around for 3-5 years gives you at least insight into the likely problems.

We follow OMS carefully in addition to Tecfidera.


andydav
9 months ago

Initially I was on Rebif until the irritating skin redness at the injection sites and the lack of decent site to inject pissed me off so much I was intentionally missing injections. After discussing this with the MS nurse and neurologist I was placed on a Teriflunomide (Aubagio) trial within the Brighton area health authority. I have taken this medication for the past two years with no side effects (bit of hair loss, now OK). I have blood tests every three months to check my liver and blood count to monitor the drug (all good), I’ve had two MRI scans with no new lesions and no relapses for six years. One tablet a day, better then three injections a week. Been good for me.

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