Feeling abandoned for not wanting side effects

Symptoms and treatments
1

So title might be miss leading in the fact that I have MS so of course there will be things affecting me but I recently too the decision to come off the drugs. I was on plegridy and the side effects when i was first diagnosed from what I was experiencing was comparable. We then hit a pandemic and then it seemed on the scale of things that feeling horrific for a few days was a small drip in the ocean. However the more time went by and I would stick myself with the drug and feel like crap the more I felt my MS was a huge part of my life and organising it around how I would feel become overwhelming. Also the brain fog I was getting the more time went on was huge. I felt like I was heading toward Alzheimer in recalling and my use of word. On top of this after coming off maternity leave during a pandemic and trying to find a new career (as I was self employed before and the job wouldn’t fit in with kids) with a drug that would floor you for three to four days didn’t seem employable or sustainable for an employer.

I have to say coming off that drug has been like a new lease of life. I was actually running around after my kids at a park.

So I had the nurses send me out alternative drug option and to me honest I feel into a slight depression. All from reading peoples accounts of them had sever to moderate side effects. I was due to seem a nurse joined to the MS group because of a leaky bottom (nice way of putting it) , now this was happen while on medication. It not that bad at the moment. However on hearing that I am not taking medication she has cancelled my appointment to go through the equipment to help with this. stating that if I wasn’t on medication then I wouldn’t be getting that treatment. I feels like in order to get any help I have to take a drug in order to get anything.

Now I was having this problem before I come off the drug and even if I do stay off drugs I still need this but it feels like I am being punished for not taking something. She state that I should keep trying because many people don’t experience side effect when the find the right one. This is not my experience, it seems like most people are just making peace with the side effects over the possibility of a relapse or progression.

Has anyone found a drug were in all honesty the side effects haven’t been a pay off for a possible relapse.

All my scans have come back as no progression.

Any advise would be helpful. Feel very down and shunned out of how to live my life.

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I think it was easier for me because my RRMS was aggressive from the start. It was already showing me enough of what my future looked like without medication to make the decision obvious. Now, that’s a mixed blessing because no one in her right mind wants aggressive MS, but at least it made life relatively simple in that department (clutching at straws here, looking for the silver lining.)

I can’t speak to side effects; my 10 years on Avonex left me feeling mildly hung over for one morning a week, but nothing more than that. And it protected me for years before my MS finally got too strong and and I had some disabling relapses that left permanent and serious damage. I just wish I had made the switch before that happened, but there’s no point worrying about that now. Tysabri has been a life-changer, and I have had 10+ relapse-free years - a wonderful contrast to the horrible couple of years before starting it.

I started DMDs in 2000. I’m not in great shape now - I need two hiking poles to get about and all sorts of things don’t work so well - but I do get about and I have a lovely life despite MS. DMDs, and the good health they have granted me, have allowed me to stay as well as I can be. 22 years since dx, I do not like to think what state I would be in without DMDs.

But that’s me and you’re you. You must do what you feel comfortable with.

I do think that the medics have a duty to do their best to persuade you to try to keep your MS as quiet as it can be and satisfy themselves that you understand the potential consequences of not taking the drugs: that’s their job. But I am very cross that you have been made to feel that the medics are washing their hands of you because you don’t want their nice drugs: that’s not right.

My suggestion would be to try to keep separate in your mind the issue of whether to try another DMD and the issue of managing ongoing MS problems:
try not to let your understandable distress at the second colour your opinion on the first. And try to get the clinicians to do the same. Good luck with it all.

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Thanks for sharing your experience. I am only sorry your MS has taken its toll on you more. It’s nice to read you still find the joy in life. Take care

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