New Oral Treatment Tecfridera Side Effects

Everyday living
1

Hi, I started New oral treatment Tecfredera after coming off of Rebif on the guidance from both my Neurologist & 'S Nurse.

My treatment commenced 3 months ago, I had flushing on the st day and a feeling on being warmer. On the 3rd day I had loss of appetite and very loose bowels, this along with a general feeling warm continued for around 2 weeks. My bowel habits returned to normal, but for the next 4weeks I continued to feel warm, had occasional flushing & survived on porridge. My appetite slowly returned, but I could not face anything that was sweet and continued to fell warmer with occasional flushing.

I visited my MS Nurse 2weeks ago, we went through my symptoms, of which she stated where what most people were feeding back.

I became unwell last Saturday, with terrible pain in my upper abdominal area, my Husband arranged for a house-call from my GP, last Monday. GP gave me an anti-spasmodic injection. The injection never eased the pain and I was sick (white throffy) on Monday night twice. GP was called for on Tuesday as my pain had got worse and I was sick again. GP stated the injection would have made a difference if I had colic and admitted me to hospital for suspected gallbladder issues.

I was discharged from hospital yesterday Saturday, I was initially put onto an omeprizol drip, even though I have taken an omeprizol tablet for a number of years to combat any stomach issues due to the amount of tablets I was on for MS symptoms. I was also prescribed pain killers and buscapan. After the following tests: x-rays, ultrasound, scope and biopsy of the stomach and a CT scan. I was diagnosed with having severe inflation of my stomach lining, hospital consultant thoughts are that it is through either volume of meds or from tecfridera as I only started 3months ago. Long-term prognosis is that I will have to take more medication. to manage & protect stomach.

I would like to know if anyone has had similar symptoms after taking tecfridera.

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I have been on Tecfidera for 6 weeks now and the side effects are minimal for me. I’ve just had a few flushing episodes. I have not had any stomach issues apart from a couple of very mild stomach aches/cramps.

Gastro intestinal problems are stated as side effects of this treatment.

If you already had stomach problems then i can’t understand why they put you on this treatment.

I too have failed on rebif so went onto tecfidera. Alternatives for you could be copaxone or gilenya or aubagio.

Tecfidera however is a more effective treatment than the interferons so if you can get your stomach ‘issues’ under control you might be able to stay on the tecfidera.

I hope you feel better soon. Your side effects are a lot worse than i have experienced so far on Tecfidera.

Take care

Teresa.x

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Ask about aubagio I’ve been on it for 5 months with no problems. I’ve been taking omzopazole ( forgive the spelling) for reflux for many years and aubagio has not made it any worse.

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Hi Lainey

I’m due to start tecfidera in November, all being well. I’ve tried reading up on it and I’ve posted a link to a topic called 'Tecfidera - How to Minimise or Eliminate Side Effects, which I came across on the ‘this is ms’ website

The discussion focuses particularly on gastric problems.

Teresa it’s great to read a positive account of the drug - just shows that everyone reacts differently. I’m hoping that I’ll be one of the lucky ones… Anonymous there’s no reason to suppose you’ll suffer extreme side effects. People are less likely to post when things are going well, so you may be getting a disproportionate view on the severity of the side effects in the number of people taking the drug.

Good Luck Lainey - I sincerely hope things improve for you

Jane xx

1 Like
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Hi, many thanks for the posts. I have spoken with my MS nurse today and we are to work through a few options with medication for gastric issues.

Can I confirm that my post was merely to gain feedback from people who are also on tecfridera. I had no intention of scaring anyone from taking the drug, especially when it reduces the risk of a relapse by far than the injections.

Jane, I will check out the website and feedback my thoughts and hopefully positive results.

As this is a newly licenced modifying drug therapy, the feedback of side effects are minimal and as you say it would be beneficial for myself along with individuals who are making the choice of changing to tecfridera.

My moot to my MS is to embrace the rollercoaster ride MS takes you on and to “live, rest an recover”

Lanier

1 Like
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Hi

Just realised my link was incomplete. I’m not too technical but I’m working on it… This is what to cut & paste into your search engine

jane xx

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Gosh, I was just about to post a separate topic asking Tecfidera users how to minimise side effects as I’m due to start taking it tomorrow…this is scary stuff, I thought nausea and flushing for a few weeks were most likely the worst that could happen, but this is scary because I’m currently only suffering very mild MS symptoms and this makes it sound like for me the medication could leave me worse off than doing nothing :frowning:

Do any Tecfidera users have any tips on keeping well while taking it and minimising the side effects? Which meals did you take it with and were they big meals? Did you leave a certain gap between the 2 tablets, and did you take the last one a certain amount of time before bed? Any advice would be gratefully accepted, I’m a bit scared now :frowning:

Lainey I hope you are doing ok and find the right balance of medication for you.

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Hi Vincere

Click on the website link in my earlier post & you should be able to get some information on what you’re asking, with regards to meals and type of food to help minimise symptoms.

I hope it all goes well for you; I’ve got mild symptoms to date so I can relate to your dilemma.

Please let me know how you get on

jane x

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Harlekin, I’ve just finished reading that thread and am so nervous. I have 3 young children and a job and considering I am well at the moment, the thought of Tecfidera making me so ill is very worrying. I don’t know how I’d manage either with work or with the children.

Also I wonder does having to keep to this diet only last for the initial period of taking the medication, and can you then go back to eating normally, or is this an ongoing there where you have to avoid acidic foods, have a cooked breakfast etc?

The other thing is I’m trying to follow (to a certain extent) the SWANK diet - I’m not strictly counting that I’m under 16g of saturated fat per day but I am trying to stay as low as I can.

The advice in the thread mentions fat as being a key component in the meals and snacks needed to minimise gastrointestinal side effects of the drug…eggs for breakfast, crackers and cheese, peanut butter etc. So does that mean I have to abandon the low satfat…temporarily or permanently?

I didn’t realise the side effects can be so harsh and it seems that they’re a lot more widespread than my MS nurse led me to believe. The leaflet that comes with the pills says 1 in 10 people have these side effects…

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I would like to try and reassure everyone that for me the side effects are minimal so far. I am on week 6 of tecfidera.

I have not changed my diet at all.

I usually have bran flakes and fruit for breakfast with semi-skimmed milk with my first tecfidera tablet.

lunch is usually a sandwich/or pasta salad/ or a salad wrap or pitta bread with salad/ham or tuna.

For tea iv’e had whatever i am cooking for family and take the tecfidera after i have eaten. (this could be anything such as a beef dinner/curry/stir fry/chicken/fish/pizza)

I am not a person who eats a lot of fat in my diet apart from my guilty pleasure of cheese and pizza! my diet is pretty low fat generally. I am not a big drinker but was told to drink in moderation. I have had the odd glass of wine but not any spirits so far. I have not always had my tecfidera with a full meal. I have taken it a couple of times with just a sandwich when i didn’t feel very hungry. I didn’t notice any more side effects.

I have had mild flushing which is reddening of the skin/warmth/itchy skin/tingling skin. The longest this flushing has happened is for about an hour. The flushing started and i just looked like i had a rash. One minute the rash is there and then it went very quickly. It was on my face/neck/arms and tops of my legs. I did not feel unwell with it but obviously the red skin is not a good look if you are at work. I have had no stomach problems so far. I have always taken the tecfidera with food twice a day. With breakfast and evening meal.

You can take the tecfidera when you want but there has to be at least 4 hours between doses in that day. The doses cannot be any more than 12 hour appart though. Take it with food or within an hour of eating to minimise stomach problems. I usually take mine at about 8.30am with my breakfast before taking kids to school then at about 6pm with my evening meal.

I have also got 2 children to look after. I am carrying on just as normal. I am not finding the flushing hard to manage. I am not working though.

I have had about 6 flushes in the 6 weeks of treatment so far. Usually at the start of treatment until your body gets used to the tecfidera.

I am in England. I have got the drug early because i am on the tecfidera/aspirin trial.

I am a guinea pig for you lot!! ha ha ha ha!!!

I am trialling the aspirin with the tecfidera to see if it helps the flushing side effects. Obviously i dont know if i am taking the aspirin or placebo.

I hope this answers some of your questions.

I think i will start a new thread that explains the tecfidera/aspirin trial if anyone is interested?

Everyone reacts differently to these drugs but this is my experience so far.

I was on rebif for 9 years but then started to feel ill on it. I am feeling much better now.

Teresa.xxx

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Oh i just wanted to add…

I have never had any stomach problems in my life. If you are prone to digestive problems then you may be more sensitive to tecfidera than other people.

T.x

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I have done research as i am currently contemplating the menu of DMDs…

Lots of websites later, i have found that the prevailing advice for mitigating the side effects for Tecfidera is to consume the capsules on a full belly, or at least whilst eating. This supposedly helps with flushing and GI disturbances.

Perhaps of significant interest, is the recommendation that a square of chocolate be consumed with your dose (not crappy cadbury’s but the hardcore, 99% cocoa, dark as my soul type of choccy) Which is no bad thing!