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 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…
I am feeling fine now. So hopefuly tomorrow will be a non-event too and I can just get on with my life. The nurse did say though that some people do find that a bad reaction can happen again without warning and to stick with the aspirin, antihistamines and the high protein, fatty meals. My poor cholesterol levels
I like the sound of a big breakfast every day but it’s not exactly a healthy option is it? So, if this drug works, you will have reduced relapses but the risk of furred up arteries? Life is never easy, is it?
I started on Gilenya and so far so good. My mum would have been delighted to know that my heart is very strong (having a good looking neuro helps - I’m sure he pushed up my heart rate every time he came back to check on me lol ). I don’t seem to have had a single side effect so far … (maybe I had better whisper that, or touch wood or something …)
So glad all went well with starting Gilenya, Teresa And NO side effects, excellent! Because I have had episodes of Idiopathic Bradycardia in the past I am not a great candidate for Gilenya which is why BG12 has been chosen. But my MS Nurse did say that if the side effects continue to be bad she will talk to my neuro about seeing if I can go on Gilenya instead but after today I am not so worried
Going to try full fat yoghurt and peanut butter on toast tomorrow morning for breakfast and try and trick my arteries into thinking it is a healthier option
Hi Belinda, Really glad to hear day two has been better for you. Day one sounded hideous. Hope each day gets better for you, thanks for the blog Laura x
Thanks everyone for your encpuragement and support.
Day 3
UGH 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 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
Laura x
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.