Had RRMS for 10 years. Have just had appointment with consultant who has told me I now have progressed to secondary progressive and have taken me off Rebif. Although I expected this why do I feel I’ve been punched in the stomach and thrown out of a plane without a parachute!
The Barts Blog covered this subject recently. Multiple Sclerosis Research: #ClinicSpeak & #ThinkHand: stopping DMTs - are you salvageable? It seems there are a few drugs in development and probably worth asking about. https://www.mstrust.org.uk/a-z/drugs-development
what neuros fail to understand is that bits of us may be gradually deteriorating but other bits may recover after not working properly. We may have a leg that is slowly packing up whilst our arms may have periods of weakness and the they may get better.
Hello Angelica, I have had MS for 30 years, but only a couple of years ago I was officially moved to SP. I have always been on Rebif and so far the neurologist hasn’t moved me on to anything else. Moira
I saw a new neuro (changed hospitals to Queen Square) at the beginning of August. He was really excellent and treated me as if I was a new patient (which I was to him) - very thorough.
I was dxd with RRMS in January 2015, and the first neuro reckoned that I’ve had it since 1997. Last year I asked him if it had progressed to secondary, as I felt that my level of disability was increasing very slowly but surely. I got a definite ‘no’ and I wondered afterwards whether this was a way to justify keeping me on Tecfidera, which I’ve been on for two and a half years. Prescribing criteria, etc.
The new neuro strongly suggested SPMS, and said that if this was the case then I should stop the Tec. I’m to have another MRI in January and see him again in February for a decision.
I know that it’s just a label but I was somewhat knocked back by this. In a way it revived the ‘grieving’ process of the original dx. In the meantime I’m getting fed-up with the Tec as it has started to ‘disagree’ with me and I almost look forward to stopping it - if I do.
Whammel, thanks for those links. I didn’t quite understand the Barts blog one (must be having a dozy day) but I’ll certainly be asking about new drugs in development when I go.
My neuro vaguely (he’s always been a tad vague) mentioned Cladribine for me as I’m not eligible for DMDs now that I’m SP/Advanced and 7 on the EDSS. But then when reminded that I’ve experienced insurmountable side effects in 3 out of 4 DMDs, thought, mmm perhaps not. But him acknowledging that my MS is now progressive was actually a relief, now I can just stop sitting in appointments with him writing down the names of various DMTs and one by one crossing them off the list. It was becoming a little dispiriting. Sue
I’m PPMS & seeing people with SPMS after refusing DMD’s is quite demoralising. My personal research has taken me to some odd places, & then I get labelled a fruit bat. Stay on the side of the so called experts, or get locked up & have the key thrown away, by the people who didn’t have a clue in the first place. It’s like being passed around for people to claim funding for their extensions & holidays. I think it’s time to go on a holiday myself, I’m getting dizzy at all the conflicting arguments. My medical record is going from bad to appalling. Trust who, I want to know! Trust yourself, I say. I’ve done that much research, even the neuro can’t keep up. Going with what you know works. I should be on a commision. Perhaps a plastic name tag, a flash car & a suit would help. It seems to work for everyone else. Stay sane folks. MS means whatever folks with greed issues, want it to mean. Terry
I was RRMS for 15 yrs been SPMS for 5.
Had 8 years of “DMD”. What did they modify if I’m now SPMS?
Do DMD actually work??