Diagnosed 11 years ago, had a whole host of DMDs and didn’t tolerate any of them. I got lots of the side effects that they list as rare
Almost 3 years ago, having exhausted all the first line medications, I decided to go drug free and try and manage my MS with diet (gluten and dairy free) and exercise.
Has been going well but now noticing changes and currently in a relapse. Balance issues, dizziness and leg pains. Also insomnia and mood changes.
Sorry the point to my post is I’m worried about whether I need to be on DMDs and also the side effects that may come with it. I’m working 3 days a week and don’t want to give up my job but worried stronger medications may lead to being unfit for work. I think I’m also worrying that i may have done more harm than good being med free for so long.
Cannot get hold of GP or MS nurse just now and didn’t know where else to find answers/support.
Can’t offer any real advice, but I’ve had MS now for more than 40 years, undiagnosed for most of that time. As I result, I didn’t have any DMT’s until about 2 years ago, and when they tried me on Ocrevus I wound up with all those rare side effects, too!
The bottom line is that I’ve lived my life without drugs and did fine until about 2 years ago. I can still move around inside my house, but getting out and about now requires a cane or motorized cart. I had to give up working around that time, too.
You’re in a very difficult position now, and other than discussing it with your care team, I don’t have any suggestions.
Wondering if you have tried again your MS nurse… I think she can help. If you think this may be a relapse you may need to go to A&E and they will put you in contact with the Neurology Team on -call to assess you. I would suggest that… yes, going to A&E … the time…the hassle…take with you some water, a blanket, earphones and a magazine.
Considering treatments is always a challenge. However, there are so many options and you can choose them based in suitability to your life style and which secondary effects you can live with. In my 16 years with RRMS I have tried a few and I can tell you that current treatments are nicer and easy to take. I had 8 years with interferon injections that made me feel flu-like symptons. I was at the same time training as a doctor. I found that getting injected during my post night shift was the best option for me…I was feeling miserably tired anyway… Nowadays I am on tablets which are more friendly. It took me a while to get my stomach around it but after some trials and errors with my diet got the upset stomach feeling under control.
I would suggest to speak to your nurse about your concerns regarding secondary effects… there is always a solution and they have a lot of experience. They have a lot of tips under the sleeve.
Regarding to your work… think about you first… we cannot give what we don’t have is my motto… I used to think my career as doctor is the most important thing to me but life showed me the opposite. Although I love my job and my patients I think that I need to be fit and feeling good to provide what they need… Therefore, I pause when I need to…I rest when I need to…
Sorry that you are in this position, I really wish I could offer useful advice, but without 20/20 foresight & hindsight I can not.
I tend to agree with other comments, try again to get through to medical professionals who will have more experience and tools in the box. It is very difficult to balance courtesy with your need to get some help to go forward. The lack of support is adding to your burden which could have consequences for you & the NHS, so try to sell it as a short term cost to save big bucks in the future.
Wishing you all the best.
Mick
Don’t worry about long posts, sometimes you need to explain what’s happened to you.
I’ve been in a similar situation to you. I had side effects from 4 different disease modifying drugs. From Avonex, Copaxone, Tecfidera and Tysabri. So in my 24 years with MS, I’ve mostly been DMD free. As a result, I’ve had a lot of relapses and am now quite disabled.
It’s certainly not my fault I’ve had disease activity and am disabled. Nor is it yours. It’s easy to look back and think maybe you should have tried harder. But it’s just not true.
By all means, try again to contact your MS nurse. S/he should be able to advise you on whether there are DMDs you could still try. Or maybe there are drugs which could help with symptoms. Or you could phone your neurologists secretary and try to get a phone appointment with the neurologist.
As an emotional first-aid action, I think you need to get yourself off the hook of trying to find a risk-free option: there isn’t one to be found. I am sorry that you are having a worrying time.
And don’t panic. You are where you are, and we make the best decisions we can and we never know for sure at the time (or even later) what the right thing is.
What I would suggest is that you try to rank the risks you face in order of severity. I’m afraid that, for most of us, the big risk to our health and ability to function in the world is our MS. DMDs do give us the best chance of staying as well as we can be for as long as we can, and I am sorry that your own experience of them so far has not been good. But it might be worth a chat with your neurologist or MS nurse to get their advice on what you should be thinking about as you plan ahead. I hope that you feel better soon.
Thank you everyone your advice and words are much welcomed.
I’ve been trying for 3 days to get hold of one of the NHS Tayside MS nurses without success. Their email addresses are no longer working .
I think I need to get over this relapse and then make any medication decisions when I’m not in the middle of this storm. I think I’m taking it bad as I’ve been doing so well for so long. I’m a positive, glass half full, person and I know this will pass.
So glad I found this forum think I also need to research current medications as there is bound to be one out there for me x
When you’re ready to start looking at the various drugs available now (and there are loads), think about the benefit/cost balance. The benefit is the potential relapse reduction rate, and the cost being possible side effects.
Your MS nurse (if you ever get hold of one), should be able to help. But otherwise, try to get at least a phone appointment with your neurologist (phone their secretary and ask for help).
Thanks everyone. Got hold of one of the MS nurses who is going to speak to the neurologist about me on Monday and get me in for an MRI. Once they’ve got the results a plan will be formulated from there. It’s not going to be a quick fix as I know getting an MRI takes a long time at the moment, but feel I’m heading in the right direction
think I also need to research current medications as there is bound to be one out there for me x