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Hi everyone

I have a big decision to make. I have a appointment with my neurologist at the end of the week, ànd he is going to expect me to have made a decision regarding new drug therapy.

I was on rebif but was taken off it due to weight gain and I presenting as just being generally unwell. I was them sent for a series of tests and taken off rebif straight away.

I Was sent away to decide between tecfidero and gilyena (sorry if I have spelt those wrong, but do not have the literature in front of me at the moment).

When I next saw my neurologist I starting to come out of a fog. I explained this and started asking questions. I think this is where two things happened. One I caught him on a bad day. Two i was really asking questions and not so in a fog I did not just go along with things. I questioned tecfidero and was told a lot of people had got brain disease from it. Then I asked about lemtrada and was told one person had died because of their liver.

I thought I had made a decision before this, but this threw me.
I am asking those who have experience of tecfidero or gilyena to give me advice, which would be gratefully received.
Also those who have knowledge of these drugs or people who have any advice to please get in touch.

The other thing is I will not be having my mri until next week, after my appointment with the neurologist. This is because i am stuck in a familiar tug where mri people are blaming neurologist
and he is blaming them.
This makes reaching a decision even harder.
The tests have discovered I have polycystic ovaries, and I think this is adding more pressure into the mix of deciding what to do.
Thank you for listening to my rant!

All the best and be kind to yourselves!

Valley
I think in the past I've read about whole food diet helping PSO and the good news OMS isn't far off, I wonder if a little reading and tweaking might help there.
I don't know anything about those drugs, if you have the latest book you could see if they are in there. Could see what rebound profile, if any, these drugs have should you wish to change again..
Good luck with your decisions.
Hi Valley

I am currently having to make the exact same decision - Tecfidera or Gilenya. It's not easy, is it!?

Having done a bit of research into other people's experiences, I am none the wiser, as everyone is different. Some people had great experience with one drug or the other; some did not. I guess the only thing for it is to try it myself.

My Neuro favoured Gilenya, which is what I think I shall go for. Both drugs have potentially frightening side effects - but so do many drugs.

When I spoke to the nurse recently, she gave me a long list of things to avoid eating (I think for Lemtrada). Guess what? They are all things we already avoid on OMS. Yes, either Gilenya or Tecfidera has potential side effects, but I feel that perhaps we OMSers are in a better starting position than most.

Good luck with your decision. Keep in touch if you like.

Rachel
Hi Rachel

You sound as if you were in the same confusion as myself.
I am glad you have reached a decision.
What was the thing that made you reach your conclusion?

Be kind to yourselves!
Valley
I think the fact that Gilenya is rated as the most effective drug and the fact I would only have to take one tablet per day, as opposed to 2 on Tecfidera. Like my Copaxone shots, I could take it first thing in the morning and then forget about it. Also, it's the one my Neuro prefers.

I know there is a rebound risk on stopping, but all drugs carry side effects, and they're not all experienced by everyone.

Rachel
Thanks for replying Rachel.
I know what you mean about not everyone having the same experience.
I was reasonably sure I would go on tecfidero, however, after the last chat with my neurologist I am not so sure. As I really only questioned him about one I know very little about the other. Can it be potentially as dangerous as tecfidero?
Did they talk to you about this?

Thank you again for replying.

Be kind to yourselves!
Valley
After my Neuro told me he wanted me on either Tecfidera, Gilenya or Lemtrada, I was then given an appointment with an MS nurse who explained everything in detail. Is there any chance you could get such an appointment?

There are risks with all the drugs; brain disease with Tecfidera (PML) and skin cancer with Gilenya. Hence the difficult decision! Have a look on the MS Trust website - I think that has details of all the drugs.

Rachel
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