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Brog's Blog.... BG12

Hi All,

I have decided to amalgamte my previous posts about BG12 into one continuous thread rather than starting a new post for each day. Hopefully this will mean that in the future if anyone is using the “search” function to find info on BG12 they will get this all in one rather than several posts. So sorry for the repition for those who have been following it so far

And thank you for all the support I have received too.

DAY 1

Hi All,

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 actually go away in a hurry. She also said she was pretty [filtered word] off with Biogen for understating the severity of the side effects. Hmmm…

So Day 1 has been absolutely horrendous and I am not really looking forward to tomorrow morning at all

Hey, but don’t let me put any one off….

DAY 2

YAY!!! Had an OK day today.

I went to the chemist this morning and he suggested I take the non-drowsy antihistamine during the daytime and then take plain old Phenergan at bedtime. The Phenergan will a) zonk me out and b) hopefully prevent the itching until morning when I take the next dose.

I also got some Aspirin that I took with the antihistamine before my bacon and egg breakfast and then took the Tecfidera. My bacon and eggs were not nearly so nice this morning as my stomach was cramping and I was feeling sick BEFORE I had even taken the BG12.

My stomach felt awful and I did chuck about an hour after breakfast but that was it. I fell asleep shortly afterwards and woke up a few hours later mildly itchy. More prickly really. I was a bit flushed as in warm and reddish pink skin but absolutely NOTHING like yesterday, thank God.

I feel slightly queasy and nauseous and am having the occasional scratch but truly, it is fine. The only downside is the headache but given I had a full on aura and it is one sided I am putting that down to my normal migraines and not blaming BG12.

Reading other people’s accounts of their experiences on the Tecfidera Face Book Page was also reassuring as what I am experiencing is certainly common. But people are all saying that the combination of the high protein, fatty meal before taking the Tecfidera and taking Aspirin helps to relieve most of the side effects. I did the breakfast the yesterday but not the Aspirin until today and the difference is remarkable. So Aspirin seems to be the key to this.

The Tecfidera Support Team Nurse also rang me today to see how I was getting on and she agreed that although what I am describing is not uncommon it was on the severe side of the reactions. She was a little bit concerned about the lips and tongue stinging and because I have had anaphylaxsis in the past she cautioned me to only take the morning dose and NOT to move it to the evening as I was tempted. (I was thinking I might be able to sleep the worst of it off) She wants me to do it during daytime just on the off chance I do have another bad reaction and I do get anaphylaxsis. Just much easier to deal with such emergencies in daytime rather than the middle of the night. Not that I am particulary worried about that happening. But it is probably a wise precaution.

Also I am to stay on the reduced dose for 14 days before going up to the full dose rather than doing the reduced dose for 7 days. The prescribed amount is 120mg twice a day for 7 days but I am only doing 120mg ONCE a day for 14 days. The full dose is 240mg twice a day and we will decide how to deal with that when the time comes.

In the meantime it is onwards and upwards from here…

Day 3

UGH :frowning: Day 3 has been a wipe out. Very, very nauseous this morning and I really couldn’t face eggs and bacon so I made do with ham and cheese on a slice of toast. Took the BG12 and about 1/2 an hour later I was sound asleep. The fatigue was overwhelming.

Woke up with nausea and itching at about 2.00pm and the rash was back although not as severe as Day 1. But ITCHY!!! Even the inside of my throat was really itchy and I was coughing and feeling a bit wheezy. I was a bit worried at this point but thankfully it got no worse and then eased off in a couple of hours. By which stage the fatigue was back and I conked out and slept again.

Nibbled at some dinner and promptly fell asleep again and have just woken up now. All up today since 8.30 this morning I have been awake for about 3 hours and asleep the rest of it.

One weird thing I have noticed today is that I am desperately caving sweet carbs. Things like jam sandwiches and specifically blueberry muffins. So odd as I am not usually a sweet tooth at all but although I could barely eat dinner a piece of chocolate cake went down a treat. And writing this has made me want that blueberry muffin again! Yet mashed potato, veggies and a sausage for tea made me feel really sick…

I’ll be going back to sleep again in a minute… soooo tired :frowning: Still mildly itchy and nauseous but not as bad as this morning.

Hoping tomorrow is better. Not really liking BG12 so far to be honest…

Day 4

I woke up in the early hours of the morning about 2.00am of Day 3/4, itching and red again and took a Phenergan which settled it. On Day 3 I only took one Aspirin whereas on Day 2 I took two. Seems that 2 is better than one

Yesterday was OK. I was really tired again and slept most of the day and had a really early night which is why I didn’t post this yesterday. The nausea was still a bit horrid but the flush wasn’t too bad, just a bit red and prickly. So a definite improvement

Day 5

Well, today was completely different. I woke up at a normal time and didn’t feel horrendously exhausted and I wasn’t nauseous either!!! YAY!!! I actually had some energy today

I took the 2 Aspirin and the long lasting non-drowsy antihistamine followed by peanut butter and honey on toast and then took the Tecfidera.

Then my daughter and I headed out to the local farmers’ market and I had a great day. NO itching and NO flushing at all And no nausea either

I have felt so good today that I have decided to risk taking my first bedtime dose tonight. So I took the Aspirin and after dinner I took the Tecfidera. That was only about an hour ago but so far so good. I’ll take a Phenergan at bedtime to help ward off any middle of ther night flushes but I am hoping I am over the worst of it.

The next challenge will be next week when I go onto the full strength tablets rather than the 1/2 strength starter dose.

Cheers all,

B

So far so good. It was just the first few days that were horrid. And according to others that have been on it longer than me it can get a bit awful again when you go up to the full dose of 240mg twice a day so fingers crossed I manage that transition OK.

B

Sounds like your body is getting used to it now, B.

Really glad you are doing a bit better.

I thought you might have to give up on it after your initial side effects. so am pleased to read of your progress.

Take care

Teresa.x

Bother. The night time dose seems to have been a mistake. I have got the dreaded ‘flush’ again and am bright red and itching all over. And my throat is itching too and I’m wheezing and coughing. Seriously, this Tecfidera takes some getting used to

B

Well I’m so glad Day 5 was an improvement and you could go about your normal daily business. Shame about Night 5. Looks as if you may have to take your nurse’s advice about sticking to the one tablet for 14 days. Your body might need a bit longer to get used to this one. Some people have never made it to the full dose of Rebif due to the side effects and it’s still better than nothing.

Tracey x

Hope you are ok B,last blog was 3 days ago,bit worried,seen as though you were having bad side effects with the night dose.

J x

Hi brog Hope all is well ? Haven’t heard from you for a few days. Hope side effects have settled ?

Hi All,

Sorry for my absence. I have been really, really exhausted and sleeping the clock round.

After starting the night time dose on Saturday things settled down really quickly and apart from being ridiculously tired I have been good. The flushing settled down to a mild bit of pink without any itching and the nausea disappeared.

The only concern is that I started peeing blood so I have to go to my GP and get that checked out as Tecfidera can cause kidney problems and I already have a kidney disease (also an auto-immnune thingy called IgA Nephropathy.) My neuro said that if my kidney tests come back wonky I’ll have to stop the Tecfidera. Which will be a right nuisance as I have just started to get used to it!

I went up tp the full dose capsules today and was hit by the dreadful bright red flushing and itching again but no nausea so I should be greatful for small mercies! I am taking the night time dose tonight as well so hopefully I will get through the night OK.

Apart from the possible kidney complication this is getting easier in spite of reacting badly again today. But I am fairly sure the flushing and itching will settle again fairly quickly.

But I will be glad when I can just take a capsule and get on with things rather than having my life dominated by itching, flushing, exhaustion and nausea. Another week or so and I am sure things will settle…

Cheers,

B

Well, that sounds like a mixed bag. I’m pleased that your body is beginning to tolerate the drug a bit better but don’t like the sound of peeing blood. Hopefully it won’t be affecting your kidneys. Wouldn’t it be a b*gger to have gone through all this and then have to come off it?

Fingers crossed for you hun. I would cross my toes too but they are painful little blighters at the moment …

Tracey xx

Hi B

I hope that all you have been through to get to this point, that you dont have to stop taking it, that would be a bummer.

Everything crossed for you.

Pam x

Hope the kidney tests are ok Belinda.

Get plenty of sleep and rest as your body adjusts to this new med.

Take care

Teresa.x

Hi All and thanks for your kind comments

I am on Day 2 of the full dose now and I’m not taking the aspirin or antihistamines
I’m getting some flushing a few hours after taking each tablet but nothing like it was intitially. I do feel a bit sunburnt and definitley get a decidedly pink glow happening but it is really not a big deal and is quite manageable. And the nausea and vomiting haven’t returned YAY

I will get the results for my kidneys on Tuesday so fingers crossed all is OK there. I am not too worried because I haven’t had any more problem since then and my waterworks appear to be working fine to me

So, so far, so good and I am feeling pretty confident with this drug now.

I’ll let you know how the kidney tests turn out… 'till next time

B

Glad to hear that it’s good news B. Fingers crossed re: the kidneys! Hopefully, you’ll get some benefit from it now! Teresa xx

Hi all,

Another update. Beginning of Week 3 now and my second week of full strength capsules.

The kidney tests came back normal so phew… no dramas there.

Week 2 went really well overall. I am no longer tsking the aspirin or antihistamines and am no linger eating a high protein, fatty breakfast. The side effects have been really minimal to non-existent over the last few days which has been wonderful

Today was the first day of Week 3 and wham! Major flushing episode actually as severe as the very first one I had. I was blazing red and seriously itchy everywhere. It lasted for a coule of hours and then eased off but at least I know what to expect now so it didn’t seem as bad as the first one. Amazing what you can get used to when you have to

Apparently the flushes can continue to happen totally randomly for quite a few months so it is just a matter of gri and bear it. At least all the nausea and diaorrhea have stopped although I have a had a few bouts of really bad stomach pain but they have not lasted very long at all so that is OK.

Really everything is going fine and I am not finding this much of a drama at all. The next big question will be how my next MRI looks to see if there is any reduction in the lesion load (or at least no new lesions!) But that won’t be for 6 months. I see my MS Nurse in about 3 weeks for a general check up and some blood tests to makle sure my white blood cell count hasn’t dropped but other than that I think I can safely say I am travelling fine on Tecfidera and am finally on a DMD that I am not allergic to YAY!!!

B

Good news Belinda - let’s hope the next MRI scan shows good results! Teresa xx

So pleased for you B, long may it continue.

Pam x

Oh, that’s good news, B, especially about the kidney tests.

I hope it continues and this DMD works for you. You deserve a lucky break.

Tracey x

How are you doing now Belinda? Hope you are ok?

Teresa.x