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Scared to continue Tecfidera - dizziness & headaches

Hi everyone I’m new to this forum waves I haven’t confided in other ms sufferers since my diagnosis 2 years ago - initially I felt supported by my GP and MS nurses but as time has gone on I have found it increasingly harder to get in contact with anyone and dont have a direct nurse to contact, only the ms nurses at southampton general which is 30-40 minutes drive away with difficult parking etc. Anyways so I have been on Tecfidera (I have relapsing remitting ms) for about a year and a half now. I had side effects from the start, mostly fatigue, headaches, bloating and flushing. I have always suffered from headaches but since I have been on the tecfidera I have had migraines increasingly frequently - from every 3 weeks to recently nonstop headache which got worse and better throughout the day for about 2 weeks. I have also been experiencing panic attacks and these have become more frequent since I have had dizziness. From the start I have been really worried about the PML virus. I know it’s rare but it’s really always worrying me. I have been having 3 monthly blood tests and I had a brain scan October last year which have been all OK. Now I feel as though I want to come off the medication. I have only taken one tablet today and scared to take another. It’s been the weekend so I have no one to contact. Any advice would be really appreciated

Hi Michelle . Sorry to hear about the problems you are having . You should definitely make contact with your nurse . I am on tecfidera and have had no real issues other than the flushes which I find aspirin helps with . Ifvi was in your position I would stop taking it until you get some answers . I forgot to take my tecfidera recently when I went on holiday and did not have any problems hut obviously not taking it can only increase your risk of relapse . Have you tried ringing the MS society with your worries . Good luck and I hope you get everything resolved .

Hi Michelle

If a drug is making you this unwell and miserable, then you should stop taking it. Simple as that. Contact your MS nurse and your neurologist. Explain that you need to stop the drug and want a different DMD. It’ll be the neurologist who will have to help you get a new disease modifying drug so contacting him/her for an appointment asap will be key. If you don’t have an imminent appointment, then contact the neuros secretary and ask him/her to get a message to the neurologist, that you are going to stop Tecfidera and want an appointment to discuss your next step. And send a message to the MS nurses to say the same.

Meanwhile, see your GP and explain all of the above, see if he/she can also contact your neurologist.

It sounds like a pretty poor service to have MS nurses only available at the hospital. Perhaps I’m lucky in that the MS nurse comes out to do home visits. I wouldn’t rush to see an MS nurse, just see if you can get some phone advice about stopping the Tecfidera.

Don’t let a drug make you this unhappy.

Sue

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Hi Michelle,

What if you have not got MS?

I know it’s rather a broad statement but please look at APS, http://www.aps-support.org.uk/

Yes MS does cause headaches but they can be far worse; constant and everything in-between with APS. Otherwise symptoms can mimic MS and very often can be misdiagnosed as MS; even shows lesions.

Take a look around their website, http://www.aps-support.org.uk/about-aps/how-is-it-diagnosed.php and get your GP to test for antiphospholipid antibodies (aPL).

Good luck; perhaps you will not have to worry about PML; got my fingers crossed forya.

George

Fatigue, headaches, bloating, flushing.

Just one of these things is a listed side effect of Tecfidera: flushing.

This can be combated by taking an anti-histamine when it strikes, and can be reduced by taking a daily aspirin before dose #1.

You are on the verge of ‘throwing out the baby with the bath water’.

Whilst i would agree that taking a DMD is supposed to increase the quality of one’s life, and not simply add to the list of symptoms to be contended with, i think the idea of stopping tecfidera immediately is bad advice.

You will have to forgive me; i am not a professional medical / psychological expert by any means, and i only have your one post to base any opinion upon… but sure enough, an opinion i have formed…

You strike me as being something of an anxious person… bordering on the neurotic. I say this because despite being closely monitored, you remain convinced that PML (a nasty situation no doubt) remains as a very significant threat. It is not.

You have to understand that Tecfidera reduces your blood cell count only slightly, and this reduction needs to be significant, over a sustained period of time, in the presence of a certain virus (called John Cunningham), for the chance for PML to develop. I repeat, for the CHANCE of PML to develop. Even when you fit the entire criteria, you are not certain to progress to PML.

If i were you, i would take a moment to breathe, and get back in touch with reality. You received some bullshit bad news and have joined the RRMS club. I am sorry this happened to you, but that’s just they way it is. But you have also been given one of the best (if not THE best) first line drugs to help move you to a positive, long term prognosis.

Good luck.

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hi michelle

paulo will remember what a drama queen i was when i first started on tecfidera.

his good advice encouraged me to stick with it and within a fortnight the side effects were manageable.

i’ve even become quite blase - we went to a party the other day and continued with the wine when we got home.

at which point i remembered i hadn’t had my second dose so i took it with a glass of malbec.

have a talk with your consultant or nurse, you may be able to get migraine medication from your gp.

carole x

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I think “neurotic” might be going a bit far!! It’s entirely natural that you should be anxious given constant debilitating pain, and panic attacks will only be making it worse - anxiety may also be a side effect of the Tecfidera itself. Hugs to you, Michelle!

But, Michelle, I agree you do need to breathe.

Tecfidera may well be the best first line drug there is - but only for people who can tolerate it without unbearable side effects. I quit Avonex, against the advice of my MS nurse, for far lesser reasons than you have - moderate low mood & anxiety, with occasional panic attacks. And my neurologist, when I saw him soon after to discuss next steps, was 100% supportive. He said “No, you can’t live with that, you’ve got to have a decent quality of life or what’s the point?”

If I were you, then personally I would stop taking that stuff until you get a chance to see your neurologist. But do try and get a neurology appointment soon, as there is clearly good reason to get back on the DMD train as soon as an acceptable therapy can be found for you. If your neurologist believes that you should persist but with some medication to manage the side effects, then do take it seriously - although if mine is anything to go by I suspect s/he will offer you an alternative.

Good luck, my lovely, and take care xx

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Yes but Michelle has been on it a year and a half!

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In my defence, i choose my words carefully and i did say ‘bordering on the neurotic’… i.e. not quite batshit crazy just yet.

But also, when you contemplate the definition of the term neurotic: ‘excessive and irrational anxiety or obsession.’

The original poster has been worrying about the risk of PML for over a year now, despite having all of the same regular tests and scans the rest of us have and find to be reassuring.

I agree that life can be challenging enough; that a constant level of anxiety is completely understandable; but 18 months of headache, due to a focal point of concern hinging on PML? To the point where a beneficial medication is considered to be harmful?? To me this is both excessive (in duration) and irrational (given the otherwise clean bill of health).

Finally… i admit… i try to be provocative. Gaining a diagnosis of MS is a kick in the crotch in no uncertain terms. And dealing with the symptoms is a long, drawn out and typically an exhausting endurance. It can make you weary. It can cause you to feel victimised. One method of perking up one’s resolve, is to get pissed off.

And so whilst i accept that some might find my choice of words to be offensive, i sincerely hope that instead of being offended, a reader might feel more antagonised; but not to slight me in return, but to instead decide “i ain’t gonna stand for this anymore!!”

And so this is why i say what i say. Please feel free to get mad at me, but also get mad at this disease. And just try to find as many ways as possible to push back against the challenges which confront you.

All the bloody best!

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Yes but i do not think what Michelle is enduring is due to the Tecfidera

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I chose my words carefully; [portion of remark removed by moderator] if you think it’s making you unwell get off it; listen to Sue.

George

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How are you doing Michelle? Been thinking about you and hope you survived the weekend!

Did you manage to make contact with your MS team today?

Sending you love and care, and hoping good things for you xx

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I’d email your neuro, not because I think there is anything seriously wrong, but simply because if you aren’t happy you might as well try something else. There’s quite a lot of choice and no one knows which one is the best one for you, so ask to try an alternative.

Thank you for your reply. Yeah I have discussed the headaches many times and all they seem to do is recommend something to help stop the headaches themselves. But I’m pretty sure the medication is causing them because they seem to have been getting worse and worse over time. The dizziness is new but the ms nurse I spoke to said to wait and see if it continues… Not particularly helpful either. My gut feeling I’d I need to cut down my meds for a while (to one a day?) To see if I feel any better. But I know I probably shouldn’t do this of my own accord…

I do think it’s fair that I dont have a local nurse or a direct contact. I had mentioned this to them many times and get no response… There isn’t even a ms nurse clinic at my local hospital which is only 10 minutes away from me (only Southampton which is 40 minutes) Even when I call the nurses at Southampton I usually go to a voicemail and have to wait for a response. I know the NHS is very much under pressure right now but it just seems crazy

Hi Angela, in some ways I agree with being borderline neurotic as I do have a lot of problems with anxiety, however I am also undergoing therapy & hypnotherapy and take anti depressants which should all help control this. The fact I am still having so many issues makes me think a lot of it is side effects from the meds. It’s mostly the dizziness which is causing me anxiety - I feel like I’m sort of stuck on a vicious cycle - anxiety heightening symptoms and symptoms caused by meds and then all probably making my ms symptoms worse… Hoping to get this all sorted soon

When you say headaches i’m reffering to migraines - severe sharp pain in one side of the head which literally make me feel miserable. I have tried aspirin and anti histamines already. I have also tried various things for the headaches. All I know is they have increasingly gotten worse and more frequent since starting the tecfidera. I have given it a good go (year and a half) so I guess we will see. Different meds might bode better with my body perhaps?