Last reply 3 months ago
Tecfidera and Cold/flu Symptoms

Hello folks. I’ve been taking tecfidera for about 5 months now. Flushing is the main regular side effect. If I eat before taking it that does lessen it.
But since starting tecfidera cold/flu symptoms have occured two or three times and take weeks to pass. I’m looking to see if it’s just a copy coincidence or has anyone else taking tecfidera had/having similar experience.
Cheers. B

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stumbler
3 months ago

@barn-y , Tecfidera does dampen down your immune system, to stop it attacking your Myelin.

But, it also weakens the immune system to fight off general bugs and viruses. 😕


barn-y
3 months ago

Thanks Stumbler. That’s what I’m thinking. Which ain’t great. Decisions, decisions. I’m going to see how long this bout of the cold lasts. If it’s weeks again I’m going to re-evaluate taking tecfidera.


sarah_irwin
3 months ago

Hello
I was previously on Tec and had the same experience. I was so poorly i actually went to a&e on one occadion. I decided after a few months to stop it.
I am now on Tysabri, which for me has a lot less side effects.
I hope your symptoms improve soon


stumbler
3 months ago

@barn-y , try having a word with your local and pharmacist and ask whether they can suggest any vitamins/supplements to help you avoid these bugs.

You can also try using anti-bacterial hand gel.


pmfs
3 months ago

I got though all the gastric stuff with Tecfidera by longer introductory dose. But as for bugs and colds – since starting Tec I have had a constant droplet on the end of my nose and a really bad fluey thing recently and felt so bad and dizzy that I couldn’t do anything – my immunity was at rock bottom and my mood was very low indeed- so I stopped taking my Tecfidera – within a day my mood lifted and I started to feel much better. I’m certain this was not coincidence.

I am in a real dilemma I have no current MS symptoms- I have had no relapses for over 12 years (I was on Copaxone) , but neither has my identical twin who also has MS and is not on any treatment. My most recent scan showed virtually no lesions and no new ones. I am wondering whether I really need to put myself through this? Seems you can’t take a break from treatment – without the penalty of having to have 2 confirmed relapses before resuming again if needed. Grateful for your thoughts


barn-y
3 months ago

Hi @pmfs . I didn’t know that about stopping and starting treatment. I know we all have to decide what works for us personally. So right now I’m thinking of stopping the tecfidera and going all out with the dietary approach along with physical exercise. It’s a tough one. I feel I want to share the medication experience and add to the knowledge out there on what the therapies do.
But at the same time I’m not sure I’ve committed whole heartedly to wanting to take disease modifiers…is a longer lasting cold/flu worth taking tecfidera? My other half reckons so……but I’m not so sure


pmfs
3 months ago

Hi Barn-y

I think it depends on how frequent your relapses are – I’m sure I’d change my mind pretty damn quick if I had frequent relapses. I am the 3rd immediate family member to have MS so I am not taking it lightly. When my Dad was ill there was nothing on offer – so I have always felt I should be grateful and get on with it.

However I am struggling with Tecfidera as s described earlier. If you have not tried Copaxone – that might be better as it is the only treatment that does not lower the immune system. I was on it for a long time with not a single relapse – only issue eventually was injection site reactions – but now there is a version that you inject only 3 times a week – rather than daily as I had to.

Good luck with whatever you choose.


stumbler
3 months ago

@barn-y , It’s a gamble either way. Avoid an annoying cold/flu or risk a lifelong disability……….. 😕


potter
3 months ago

I have been on Tecfidera for over 5 years and I do get a cold easily and it takes me twice as long to get over it. I had two aunts that had MS when there was no treatment, I didn’t want to have to go through the same thing they did. As soon as I was diagnosed I asked for a DMT, I wanted to do anything to slow down this disease. I am going off of Tecfidera next October, I am going to be 66 and the studies show that the DMT’s are harder on the body after the age of 60 than the good the treatment does. My husband has continued to work so we would have insurance that would cover it. He is going to retire and we will just have to wait and see how my MS progresses. Potter


barn-y
3 months ago

Thank-you all. It was good therapy getting my thoughts out there and hearing your advice and experiences too.
I’m know it’s a gamble of sorts. But two days without Tec. The cold symotoms have significantly lessened. I know I can’t switch on and off as I please so a meeting with my MS nurse next to talk about options.
Cheers all. B

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