I took my first Tecfidera (BG 12) capsule today. The side effects as listed by Biogen include some gastro-intestinal upsets and flushing of the skin.
About 1/2 an hour after taking the tablet I was feeling a bit queasy in the stomach and it slowly got worse to the gulping and excess salivation stage but no actual vomiting. And then the ‘flush’ started…
OMG!!! Flush??? Who is Biogen kidding? This was no flush. Maybe I am naive but the word flush to me usually means some gentle warmth and maybe a wee bit of pink colouration of the skin. HAH, I wish… My lips started to tingle and feel hot as if I had rubbed a chilli on them and then my face started to burn as if I had had acid thrown at it. My body steadily went dark brick red, starting at my face and creeping downwards to my feet until I was covered in a bright red and slightly lumpy rash which burned and itched unbearably. And the headache kicked in too.
I rang my MS Nurse and she said that of the 7 of us that had started on it 5 had reported the same thing and this is the ‘flushing’ Biogen described. But she agreed that flushing is the wrong word and that all 5 of us were describing the same thing of intense burning and a really painful itch. And the heat coming off me is like an oven, alternating with awful shivering. It is like a combination of really severe sunburn after you have had a quick roll in a nettle patch
Normally the starting dose is a 120mg capsule taken twice a day for a week and then you go up to the full dose of 240mg capsules twice a day but my MS Nurse said to only take 1 120mg capsule a day and to do it for 14 days rather than 7 before going up to the full dose. Also to take the tablet after a full meal with plenty of protein and FAT!!! to reduce the nausea (that seems counter intuitive!) and to take an anti-histamine immediately to try and reduce the itching. She also said that Aspirin taken before the BG 12 can reduce the ‘flushing’ but she has to talk to my neuro about that because of other medical problems I have which may make aspirin contraindicated.
She then went on to say that if this doesn’t improve she will talk to my neuro about swapping me (and the other 5 ) onto Gilenya as it seems this side effect doesn’t actualy go away in a hurry She also said she was pretty pissed off with Biogen for understating the severity of the side effcts. Hmmm…
So Day 1 has been absolutely horrendous and I am not really looking forward to tomorrow morning at all
My MS Nurse has just emailed me to say she has spoken to my neuro and that she has said to take the Aspirin along with an antihistamine to reduce the flushing effect. So hopefully tomorrow won’t be as bad
And you’re right Dom, you’d certainly hope the drug lives up to its hype in terms of effectivenss to justify the revolting side effects
Understatement of side-effects (though I realise they’re not going to brag about them!) or the assumption they’re going to be “acceptable” to anyone with a disease as serious as MS, does concern me. I know what is deemed “tolerable” will depend, to a great extent, on the desperateness of the person’s plight to begin with (think only of chemotherapy). But nobody wants side-effects that are worse than the symptoms they already have to deal with. Especially when it’s not in return for a “cure”, but only an attempt to slow things down.
I hope this reaction does diminish, but it’s not very encouraging that there’s already talk of switching 5 out of 7, after just a single dose. I wonder how much grace they will give it, before deciding?
It does make me wonder more now about the allergic reaction people reported with the Dimthyl Fumurate in the couches that you mentioned being applicable to the MS version of the drug
Crikey! They call that flushing?! The mind boggles …
I really hope it settles down although from what you read in their leaflet (and from what your nurse has said) it doesn’t sound very promising. Considering that itching/burning is part of the neuropathic pain that goes with MS, it’s the last thing you’d want as a side effect - couple that with looking like a cooked lobster and it’s not a winning formula. It would have to be a wonder drug to be worth it … (hmmmm, I wonder?)
Let’s hope that the antihistamines and aspirin do the trick and day 2 goes more smoothly.
I wasn’t going to say anything, because it smacks of: “I told you so”, but it does sound uncannily like what those poor people went through, who sat on the imported sofas, doesn’t it? Might be complete fluke, of course, but if I’d read your description in conjunction with the ‘sofas’ story, and NOT in the context of having recently taken BG12, I’d have thought it a perfect fit with the reactions others have reported. And either way, it’s clearly much more than just ‘flushing’. I too would have expected ‘flushing’ to be minor and mainly cosmetic - not to cause significant distress - and certainly no rashes involved. ‘Flushing’ isn’t a rash, is it? Pffff!
The itching and burning is a million times worse than any neuropathic pain I have had Tracey I was scratching like crazy and really miserable. It really is as if I had taken a roll in a nettle patch or been bitten by a squillion biting ants. (Australian biting ants btw )
And you are quite right, Teresa, it had better settle soon because it is going to make life unbearable if not. It sure as heck is not a minimal side effect. And if that is flushing it makes you wonder how any women get through menopause! Tbh I was expecting something like a menopausal hot flush but this was off the scale and NOTHING like a flush. Insanely itchy severe RASH is more like it.
And Tina in the nicest possible way I wish I could post a photo to show you what it looked like but I can’t seem to make that happen. Does anyone know how or indeed IF we can post photos?
I don’t know of any direct way you can post photos. The only way I know is if you uploaded to somewhere like Flickr or Picasa, and then posted a link to that. But external link might then get held in the mod queue, I dunno. Mine seem OK, but then I rarely link, and more often than not, only to elsewhere on this site. If that’s not safe, where is?
I think I do understand the itchy, burning part, B.
Years ago, I had an allergic reaction to an environmentally friendly bath cleaner. Insanely itchy rash all over. My GP gave me 12 tubes of steroid cream for it and I was popping antihistamines but still couldn’t stop scratching lol. She also advised me to take a cool bath to relieve the heat from my skin. As soon as I got out of the bath, I realised what the allergic reaction was from! The burning was worse than ever. I laid naked on my bed with ice packs all over! (She said I had done well to identify the allergen …) I scrubbed the bath (with rubber gloves on) and went back to my tried and trusted bath cleaner. I’ve never changed since.
My neuropathic pain was similar but without a rash. My left arm was like ants crawling under the skin, it burnt and itched like mad. I spent a week with one arm hanging out of bed as I couldn’t bear even a cotton sheet on it. I was wearing vest tops in late October. I was prescribed amitriptyline which took almost a week to kick in - by that point I was a zombie as I had barely slept for 2 weeks. My nurse said some people describe it like sunburn and I asked why people would get sunburnt year after year if it hurt so much? I wouldn’t know what sunburn is like as I don’t change colour in the sun. Even now I cannot cut down my amitriptyline as the itching begins and I cannot bear the thought of returning to the intense itching/burning. Worst pain ever (and I’m not a wimp - I went through child birth with no pain relief at all). Oddly enough, this wasn’t considered a significant relapse as it was ‘just sensory’!!
However, yours came on very suddenly without the gradual build up that accompanies an allergic reaction or neuropathic pain so that must have come as a huge shock. That and the (very attractive sounding) discolouration of your skin, see I’m using my imagination
How does the song go - ♫ Things can only get better ♫ - (let’s hope so)
PS - my neuropathic pain was just one arm and it drove me mad. I’m not sure I would cope if it was my whole body. In fact I didn’t cope with the allergic reaction which was my whole body - if I was you I would be in a cold room with ice packs all over …
The BG12 reaction sounds very like the allergic reaction you are describing, Tracey. I have had hives before with allergies and it is very like that but without the distinct welts, just a generalised slightly raised rash. But the itchiness is the same as having hives.
But the neuropathic pain I get is not quite like that, it’s more like a Chinese burn and also sharp stabbing pains and electic zaps. Bl**dy MS does it differently for all of us, doesn’t it?
No wonder my nurse thought I was making a huge fuss about nothing much then I thought she was just being a bit harsh with me. She also seemed a bit surprised that the amitrip took a week to work …
Ah well, on the plus side I recover fairly quickly from my disabling relapses.
I think what you described for your neuropathic pain sounds horrendous! Far worse than my usual zapping and burning. I know a severe allergic reaction is way worse than my neuropathic pain and if yours is like that I pity you
The only time the neuropathic pain for me got completely unbearable was when I had Central Pain Syndrome and severe Trigeminal Neuralgia at the same time. Basically my nerve responses got so scrambled that absolutely everything became excruciating agony and I couldn’t bear the slightest touch anywhere. And the TN was just the straw that broke the camel’s back. I had to be hospitalised for that bout and had a 3 day infusion of Ketamine (the horse tranquiliser!) to stop it.
And given your Nurse was dismissive I think your first reaction of her being harsh with you was spot on! And Amytriptiline can take several weeks to reach full effect so Ya Sucks Boo to your nurse
It is 5.00am here and I have been awake for the last hour scratching and itching again and going bright red all over again. Seems the antihistamines don’t last for 24 hours which is a nuisance since you can only take one a day
Off to the chemist when it opens to find another type of antihistamine that I can take more frequently I think. This is awful
I wonder how much grace they will give it, before deciding?