Has anyone started Ocrevus yet for PPMS in England. If so where did you have your infusion, how was it, any side affects? I have put my name forward and await confirmation. Thank you.
Hello, Did you get asked if you would like to put your name forward, or did you ask to be? My newly diagnosed partner might be eligible, we shall see after some more tests. Just wondering if we will need to push for it. I expect it will be popular.
Apparently it’s not going to be confirmed till mid June and then the NHS have 12 weeks to make it available so we’ll be looking at mid September at the earliest before anything happens I suspect.
I asked my ms nurse and she has put my name forward. I met the criteria which is, I can still walk 25 meters and I was dx less than 15 years ago. Get your partners name at the top of the list.
Thank you for replying. My name as gone forward to my neurologist via my ms nurse, so I wait and see.
Having looked at this OCREVUS 300 mg concentrate for solution for infusion - Summary of Product Characteristics (SmPC) - (emc) I can quite safely say I would not touch the stuff with a barge pole.
Thank you for the link. There’s definitely food for thought. I have my own reservations about it. Again thank you.
There’s some quite specific detail on PPMS patient’s eligibility from what I read. I had no active lesions on my last MRI so I don’t believe I’m likely to get it. I know that bit quite specifically as it’s why I didn’t qualify as a PPMS HSCT candidate either. Sonia x
I do not get to know anything about eligibility for Ocrevus or stem cell treatment. I have found that no one is interested in offering me any treatment. When I was dx with PPMS in October 2010, I was told quite plainly that there was nothing they could do for me, my neurologist even wants to stop seeing me as there are others out there that can be helped, so basically I am taking up someone else’s time.
2 Likes
Have you read the contraindications on most over the counter medicines? They too can be very scary! My personal feeling is that if I’m eligible for it I will probably consider it after a full discussion with my consultant.
2 Likes
Likewise Simone. I was diagnosed 13 years ago. The neurologist then told me there’s no cure and no treatment, and advised me to avoid heat, exercise and stress. I felt like I’d been told to go home, sit down and wait for paralysis!
I was then referred by my gp (who was really supportive and did his best) to an ms specialist 50 miles away. Nice chap but I was making a hundred mile round trip to say I’d got worse and be told he’d still nothing to offer me, so my gp, at my request referred me back to my local hospital, where I could get the same a mile and a half down the road.
Then I saw neurologist number 3 who discharged me on the basis that he couldn’t do anything for me so why waste his time and mine. I can see his point but…
Then I persuaded my gp to refer me to another ms specialist, this time only 20 miles away, another nice chap, still nothing to offer me, but at least he listened to me and talked to me, and I was back in the system. Then he left and I found myself back with the first neurologist, who doesn’t seem the slightest bit interested, but at least sees me for an annual review. If I’m lucky I get to see one of his team instead.
My experience is that there’s no interest, no information, no support, nothing.
1 Like
I feel so sorry for you both. I was unfortunate enough to be diagnosed by a neurologist with the same “ppms, no treatment, no follow up, no nurse or OT etc reveal”, and for theft privileges I had a good 70 mile round trip. I asked if I could be referred to a neurologist nearer to where I lived as I was unable to drive that distance. I was sent to a wonderful Neuro who specializes in ms, at my first visit I was introduced to my ms nurse who then referred me to OT, physio and a few months later even came to visit me at home to see how I was coping, and was always a phone call or email away. Even now 6 years later if I have problems I’ll be seen as an emergency the next Tuesday. It should be like that for everyone. If you have any other chronic illness you get followed up, so why not progressive MS??? Sorry, I’ll jump off my soap box now, get out my essential oils and beverage for a while. I feel really upset on your behalf, you’ve not been treated fairly. Cath x
1 Like
Me too, my local neuro had no intended future appointments intended. I researched (I previously took part in a trial because my neuro rehab Dr referred me)and got my GP to refer me back to the neuro in London after I talked to his secretary. I believe I’m now on a looooong waiting list for ocrevous, when my case has been considered by MDT. I’m still crossing my fingers but doubtful I’ll get it. Even my next appointments was first delayed by two months and due to time of day I had to cancel so my sept. appointment is now in Jan next year. Sonia x
Thank you for replying, I had an appointment at the end of February with a OT consultant in Hull, it’s a 100 mile round trip for me. He said that in 3/4 weeks an OT girl would visit my house and look at my shower, bed, stairs, height of my walker, cane, generally everything, but now 13 weeks later, still no one. I rang and they said my referral went to the wrong department and so it had to go back to who referred me and so back on the waiting list. The NHS gets worse. In all 9 years of being dx, this is the first time I have been offered anything and then it doesn’t happen.
I went for a MRI on my head and neck because I have such severe pain up the left side of my head and behind my eye. It took a year to get my results, a clerical error, or so I was told. Every time I rang I was told how busy they were, or the neurologist hadn’t read the mri report, it was a nightmare. Turns out I have an active lesion in my neck but no help was given. Basically go home and learn to live with it. I wish medical marijuana was available here, it would certainly help me.
2 Likes
I was told you need a mri to see how active your ms is but I can’t have one I haveplate and screws in my ankle and have towait to see neuro which isn’t until September which sucks.
Alysea I have screws in my neck and have had numerous mri’s. I had to wait a year after my surgery but I’m not sure whether it was because of the screws or just whether it was just the time they wanted to see whether the problems I was having was due to the damage to my spinal cord or MS. Plates and screws are made of titanium which I don’t think is affected by the scanner. It might be worth questioning.
Cath
Thank you sir will ask at my next appointment x
So went for my MRI scan to see if i have active lesions, 2016 i had no active lesions, but my MS is getting worse over the last few years… so my question is if my MRI scan comes back no active lesions is that good news as i wont be eligible for the only drug availible fo PPMS… double edged sword i think
For over a fortnight now i have been feeling absolutely shattered with extreme tiredness/ headaches/ and stomach disorder,having to go to the toilet at a minutes notice, i have experienced this on a couple of occasions over the last few years while i’m labled P.P.M.S i have heard you can suffer a relapse. any thoughts anyone.