Is anyone else on this forum participating in the Expand Study, looking at safety and efficacy of siponimod in SPMS?
I have been on this trial for 9 months now. It hasn't slowed my progression at all. The only thing it has done is raise my blood pressure and I now have to take blood pressure tablets. I am also now suffering from dry eyes (my tears feel like acid when I cry), although I don't know if this is a side effect of the drug or not.
My dilemma is do I stay on the trial or not. I know this is providing useful data for the drugs company. However, if it is of no benefit to me and I stay on the trial I honestly believe it won't be long before I am permanently in a wheelchair, if I continue to "progress" at the rate I am. While I am on the trial I can't pursue any alternative treatments. I know there is nothing out there for SPMS but perhaps I could try another trial. Is anyone out there trying anything that is proving to be effective at slowing the progression of their SPMS.
Really not sure what I should do.
I received a phone call yesterday from the hospital where I see the MS nurse asking me if I wanted to participate in a new clinical trial that is underway for individuals who have secondary progressive multiple sclerosis ( SPMS). The drug, siponimod, is an immune system-modulating treatment designed to be a more selective sphingosine 1-phosphate receptor modulator than Gilenya (fingolimod).
So I was wondering of anyone out there is on Fingolimod / Gilenya? Not sure which is the name it is more commonly known as. Can you tell me what you think of it?
I am also on the waiting list for the MS-SMART trial. (where existing drugs for motor neurone disease, asthma and heart disease are being tested as possible treatments for advanced multiple sclerosis (MS).) This trial was supposed to start last Autumn but they have fallen way behind schedule and still haven't recruited any participants.
Clinical trials seem to be like buses - none for ages then two come along at once!!
My dilemma is which trial should I go on? If I wait for the MS-SMART trial I might find I do not fulfil the criteria and I have missed out on the Siponimod trial. I guess it is all a gamble - the professionals don't yet know which treatment is going to work. Plus I might end up on the placebo.
To add to the complications I have just started LDN and I am tempted just to wait and see if I see any improvement form taking it.
Sorry for such a long rambling post but I am feeling quite confused.
Any words of wisdom would be gratefully received.
I have been using copaxone for three weeks. I don't mind the injections everyday, actually i get a kick out of finding new spots, so i can play dot-to-dot on my body, light humour, gotta keep that going.
What has started out fine I now get welts on my thighs. So stopped injecting into there, i now do my tummy, arms and buttocks. Again don't mind that but i spent the entire of last night scratching my injection site from yesterday on my left arm, huge welt there. Welt and redness there before scratching. Really itchy and i am using shear determination right now to not scratch. Did my tummy today, no problems. I am just running out of spots and kinda worried. I have been rotating them all aswell.
Has anyone else had this much trouble and what did you do to relieve it?
Hi everyone-I hope you are all doing ok?
Seeing the Neuro soon and was thinking of enquiring about enrolling on a clinical trial of some kind. Just wondered if anyone has any experiences of these trials? And if so how does it impact on your daily life? Interested to hear all thoughts on this, thanks.
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