I was first dxd almost two years ago with rrms. Aged 55 and no real previous symptoms. Eventually started Tecfidera. About a year later my Neuro confirmed what I’d suspected. Not rrms but more likely ppms, as my mobility had deteriorated quite clearly (and fairly rapid). At my request she agreed to let me stay on Tec until I saw her again and she’d review the situation. We both know there is nothing for rrms, but as she said, we don’t know anything for certain.
I saw her again last Monday. Despite my mri showing no change since the previous one in January last year, I told her my mobility has definitely worsened. After a really good, lengthy consultation she suggested I have a break from Tec and “see what happens”. She will organise another scan and I will see her in three months. We can both see what course of action to take then. If there are any changes (I presume she means either changes in the mri or my own physical changes) Gilenya would be another option.
Am I crazy to be considering any DMD if I have ppms. How can we even be certain it is ppms that I have? I’m really not sure what I should do if given that choice in a few months.
I think it is quite impressive and perhaps open minded that the ‘white coats’ were happy to let you continue taking the drugs even though prevailing wisdom suggests that such things are useless in the face of PPMS.
I am sorry that you didn’t derive any benefit from persisting with it, but at least you were allowed to give it a shot!
With such attitudes in mind, i wonder why a valid ‘second line’ therapy isn’t being proposed (Gilenya i though was ‘first line’ like Tecfidera); Tysabri for example?
I guess from reading other threads in here, you might count your blessings that you were not referred to QE in Birmingham, where patient welfare clearly ranks as a very low priority. If i were you, i would grasp with both hands anything and everything that might help you with the challenges you face. The worst thing i think when fighting this battle, is to be told “no you cannot”.
Thanks Paolo. I’m in Ireland and my Neuro and I have a lovely relationship. Let’s just say I laid my cards on the table when we met for the second or third time. She barked out her thoughts and intentions and expected me to do as I was bid. As she closed my file got up to leave the tiny room, I just told her I hadn’t finished! She sat back down and I asked her to treat me as an equal and not over simplify or talk down to me. I’m an intelligent woman and I would ask for clarification if I could not comprehend her terminology. We “understand” each other beautifully.
I was a little taken aback at the suggestion of Gilenya to be honest. I had expected it to be the end of the line with DMDs, not be told there might me a possibility of another in a few months time, pending scan results and any changes in my mobility.
"The worst thing i think when fighting this battle, is to be told “no you cannot”…The worst thing for me is to hear that phrase. From a very young age, my subconsious would shout back, “yes I can and will!”
