Hi feeling pretty bewildered A recent MRI for a slipped disc revealed an old lesion that has grown apparently So I had an urgent appointment with my Neurologist It was 7.30 in the evening and I was knackered to be honest He’s arranged another MRI for Sunday ( as the previous MRI only looked at a small area of my back) Strangely he brought up the subject of DMT telling me there are plenty of drugs to try and at 62 there is still lots of life left in me I was diagnosed with MS over 23 years ago and have never been offered anything In fact I was under the impression I had PPMS so didnt bother seeing a neurologist until 3 years ago when I got really sick again All I have been told for the last 3 years is I have lesions C2 C3 C5 T6 T8 T10 and T11 and a lesion in the pons that apparently were inactive So worried feeling like a newbie to be honest and dont know if I am brave enough at 62 for DMT All I’ve heard are horror stories about the side effects I think 20 years ago possibly I would have considered them but now I don’t know how I feel and why would I suddenly develop active disease unless it always has been ? Anyone started on drugs late and what were your experiences Thank you
I’ll be 62 in a few months (d.v.) and have been on DMDs for well over 20 years and I certainly don’t feel that they’re only for the youngsters!
I’m 70 in less than 3 months and have been using Avonex for some 17-18 years now. I do get some side effects- feeling generally a bit rubbish for 1-2 days but I just take paracetamol and take it easy for a day. If I were you I most certainly wouldn’t hesitate in getting a DMT. If you do find the side effects are too much then just ask to change the DMT
I developed ms at 51 and at 52 I started kesimpta a monthly injection which I wouldn’t describe as an injection as it’s a pen that isn’t scary at all. I feel much better, I have relapsing remitting ms not sure if that makes a difference. It’s been a no brainer choosing to take medication for me and I have had no side effects. Do some research and see what you think.
Hi Im 60 and started a DMT 6mths ago.
I’d rather chance side effects than a horrible relapse and/or new lesions causing greater damage.
All my lesions were old until last year when a new one was found to my neurologist surprise.
Hi,
I can understand how going in for a slipped disc and then being presented with all this other stuff would be a bit disconcerting.
I’m in my late 40s, recently diagnosed with virtually no symptoms. I started on kesimpta (ofatumumab) in January and it’s been a breeze so far, just a few flu-like symptoms after the first dose or two.
On the issue of side effects… beware “horror stories”. All medicines come with a long list of scary side effects. Look at the patient leaflets for paracetamol or aspirin! It’s not a list of what will happen, but of what could happen. A good MS nurse or neurologist might give you a feel for what is actually likely. Websites are less useful because people tend to post when things go wrong, not when they’re fine.
The other thing is that MS itself is progressive and does not seem to progress in a linear fashion. So you can be ok for 20 years and then go rapidly downhill. I know one man whose MS was like this: fine for decades and then it just started to hit his mobility, now he finds it hard to go far without a wheelchair. If you’re reading lists of side effects, it’s worth reminding yourself of the joys MS might bring: fatigue, incontinence, mobility impairment, cognitive problems…
20 years ago most of these drugs didn’t exist so they weren’t an option. Then the early drugs had side effects and weren’t as effective as the newer ones. Nowadays websites like the MS Society or the MS Selfie website (infocards) have useful resources to help you choose a DMT.
But being “older” is not a reason to exclude yourself from healthcare… rather the opposite! If they thought your MS was at a point where the drugs wouldn’t help, they wouldn’t offer. I think it’s sometimes said that we eventually get to an age where our immune system weakens and is less of a threat - but if you have growing lesions perhaps that’s not where you’re at.
If they’re offering, worth taking seriously. At 62 you potentially have decades left!