I am about to start on BG-12 (Tecfidera) this week. It is the newest of the oral DMDs and has just been approved in Australia and is available only on the Product Familiarisation Programme from the drug company. Because I was one of the very few people in the world to be treated with Cladribine before it was pulled off the market it has meant I am now very limited in what I can take because of the way Cladribine works. So all the Cladribine cohort were promised to be the first to get BG -12.
I am just waiting on the results of some blood tests and then assuming they come back OK I will start the BG -12 later this week. Because it is such a new drug and not many people are on it yet I was wondering if people would be interested in hearing one person’s experience with it or not?
If there is enough interest I’ll do a regular post on here so you can see how things go with it… but do remember that it will only be my experience and so not representative of how other people might find the drug.
BG12 is for treating RRMS to help reduce the frequency and severity of relpases and also to reduce the rate of progression. It is a very effective drug according to the clinical trials.
I think it would be very interesting to hear your experiences with the new drug. At least we would have some personal experience to refer to if/when it is approved over here. Although we can read the drug company’s information leaflets about the drug, it’s so nice to hear first hand stories when we are considering our options.
Fingers crossed for you Belinda. And l do hope everything goes successfully. l am SPMS - so it will not be for me - but l speak for many of those it will.
Time we all had - and especially you - some good news!
I am back to my neuro this day week to discuss changing my DMDs as copaxone hasn’t been working for me and this is one of the options we had discussed initially although obviously I will have to wait for it to become more mainstream.
I’ve had various blood tests and a brain MRI so will be basing my choices on the results of those but I’d be interested in hearing more about Tecfidera as it might be what I am changed to.
Thank Francis. Interestingly BG12 is being investigated for its neuroprotective factors and potential for progressive MS as well so don’t give up hope.
Thanks Pat. I’m not on Warfarin any more. The haematologist switched me over to Clexane (low molecular weight Heparin) instead as my INR was impossible to stabilise. Although it does mean doing two injections every day it is far better than the Warfarin and I am much more stable as a result. But oh my poor tummy The bruising from the injections is a bit gruesome. Nothing quite like being decoagulated and sticking needles in to give massive bruises!
Send me a PM and fill me on how things are for you. It has been far too long since we chatted xx
There seems to be quite a lot of interest in a blog on my experiences with BG 12 so once I get it and actually start I’ll do a daily blog of how I feel and any side effects. From what I have read the most common one is flushing of the skin and gastro upset. Apparently by taking Aspirin before you take the Tecfidera you can reduce the flushing but because I am on Cleaxane (an anti-coagulant) I can’t take Aspirin so fingers crossed I am in the 60% who don’t get it