In the current thread on lesions, Hobs wrote:
“Erm 1st MRI is like a baseline then with me 9 months later they did another one and I had more T2 lesions, then they gave me copaxone and year later more lesions so they took me off copaxone.”
I have just beeen made aware of another.
In a nutshell it is that if you got worse while on Copaxone,and then stabilised for more than six months, this would indicate that Copaxone could be stopped.
In my case, I was invited to choose a DMD (and assesssed as 1.5 on the EDSS at the same time). Six months later I started Copaxone, had two relapses in the following 8 months, none in the following two years (well, maybe one, but there were other circumstances), but was re-assessed as 6.6 EDSS after the last clear relapse. I am still 6.5, but have been advised that the recommendation will be to stop Copaxone at my next review (in August). Unlike Hobs, I have not had an MRI for about four years, so the decision will be made on the grounds that my condition has worsened and then stabilised.
The implication is that I am on the point of being considered as SPMS (I had figured that anyway) but I have been unable to find any official guideline that suggests this particular criteria.
Take note.
Geoff
Wow well Dr Geoff. My Neuro on every DMD hes wanted me to have an MRI. I also did a few studies for Glaxo and had an enhanced MRI, pet and cat scans and bloods.
After moving from copaxone to tysabri 5 months later on it I developed tysabri antibodies and in infusion room was unable to breath, went all red and blood pressure dropped and I really wanted to just shut down.
Nurse came over stopped infusion and gave me a oxygene masked and kept shouting breath lol.
Months later they did another bloodtest and they found I still had the antibodies and its not gone away.
Ever since that day looking back my MS has not been so bad or is that because the Rebif working?
On copaxone it was like Evian no site problems and it really did nothing for me I had chronic fatigue back then, leg kept giving away, Limping everywhere, bad foot drop, vertigo and going into retard mode where I could not process information or conversations. Swallowing issues with stuff kept going into my lungs instead of stomach.
Most of above has gone apart from fatigue so I take amantadine for that.
When I was on Tysabri my eyesight cleared up back to almost 20/20 then weeks after I stopped back to being soft. now only the odd day where I don’t need glasses. Before MS diag I had my eyes lasered.