Hi If anybody can help or advise me what can I do. I was diagnosed in March 2017 with Primary Progressive Multiple Sclerosis. I know that my condition has deteriorated because I am fatigued more and unable to walk fewer distances. I got in touch with my neurologist who sent me for an MRI scan. I have now recieved a letter to say I am not eligible for the new treatment as my scan does not show new demyelinating lesions. This was the first treatment for PPMS and I had waited for so long for it. But I have been refused. Any advice would be much appreciated Thankyou
I believe that there are conditions tobe met in order to be prescribed the drug. Evidence of activity being one such condition. With a history of cancer, I won’t be able to get the drug either. I cried in the neurologists room when I was told this. I had great hopes for it.
There are several conditions to be met, the first of which seems to be evidence of progression on a recent MRI. Then there are things like not very long (15 years!!!) since diagnosis and EDSS of less than 6.5. So, if there are no new lesions then I suppose that’s that - so very disappointing. I’ve had my MRI but haven’t yet had a consultant’s appointment to discuss the results. I’m keeping my fingers (and toes!) crossed.
No problem thankyou for replying. This is so unfair I have an appointment in April I will too discuss with them on how I can become eligible somehow. Ok thanks and happy new year
I wish you luck but if the lesions are not active you wont get it! Why not try pushing for Fampridine (fampyra)?
When one door closes ‘battered down’ the next one! Keep an eye on what’s happening Google/MS website. When you are told no, think of something you can get. Happy new Year and welcome M
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Hi I care for my wife she has had her first infusion of ocrevus two months ago. She has energy in the early hours 2 am 6am. But no energy during the day, she feels like sleeping most of the day. Has anyone else experienced anything like this. Regards and thank you in advance. Martin C
Ive had spinal ms for over 20 years and am not eligible for ocrevus either. hopefully youll be offerd an alternative.
Ah Newbie, I hope you’re sitting comfy … it’s a long post, be warned.
it’s really no bad thing that you can’t qualify for Ocrevus yet. Maybe you feel let down because you were wrongly given hope in 2017.
The fact your MRI’s don’t show any activity or more damage is actually fabulous! Most ppms & spms patients pray for little or no activity.
Ocrevus cannot slow down something that isn’t active.
Over 40% who do meet the criteria, suffer serious side effects. Including a higher than average side effect of breast cancer.
When you have a new lesion within the next year or two, then Ocrevus or some other, new & improved drug, will be offered to you. Even though you feel you’ve waited ages for treatment, your diagnosis was less than 3 years ago, this is not a long time in ppms years. PPMS has been around for ages and some people have waited 14 years for this treatment to be discovered. They could qualify. Anyone with PPMS over 15 years cannot qualify at all!
The saddest part is for patients who’ve had ppms or spms for over 15 years. They cannot qualify at all for Ocrevus, and no treatment has been developed yet to help them.
Personally, I have the greatest respect for the positive outlook shown by those who have suffered SPMS and PPMS for over 15 years. They don’t fit the criteria even with active lesions!
My advice to you, Newbie, is to get positive, find alternatives to manage your ppms, e.g. if DVLA revoked your driving licence due to MS, then catch a bus, taxi, train, plane, ship, you can go anywhere. To save energy, buy a Small Power Chair (freedom & you can use it on public transport).
Ensure you have annual MRI’s to spot any new lesions, changes or damage early as poss. Then you can apply for Ocrevus again, with more evidence to success.
I wish you well hon, you’ve barely had time to come to terms with it. Only around 5000 women + 5000 men have ppms. A population over 66million people live in the UK proves how very rare ppms is.
Remember, research and science have made the first ever drug for ppms and you will be eligible before the damage becomes worse.
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When I read how bad some side effects from Ocrevus are, I`m glad \I don’t qualify. But I understand your frustration if you aren’t offered it.
I too, cannot qualify because the MRI’s I had in November, do not show any new lesions or activity between the MRI in 2018 to the MRI I had last November.
Despite every annual MRI showing activity & progression each year since 2013 to 2018, it appears to have not continued to progress in 2019.
Most family & friends have noticed slight deterioration in my PPMS each time they see me. The recent MRI’s show no new lesions or activity.
I totally understand why NICE & NHS England have set a stringent criteria and need evidence before spending £19,000 p.a. per patient.
So I take reassurance that my PPMS is not aggressive enough to begin Ocrevus. Allelluja!
Best wishes and good luck to all.
Chrissie xx
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I have PPMS.For the last year I have had a bladder infection which no amount of antibiotics seems able to cure.I had an ultrasound recently which showed no problems with my bladder or kidneys.My GP seems to be at a loss as to what to do next.I saw a urologist last summer who was useless.She told me to switch to decaff coffee and drink more water.Both ideas were useless.Does anyone have any ideas about what to do next? I am going bananas and not sleeping as I get up 3 times nightly to go to the loo.Thanks in advance.
Hi, I have been a member of this chat line for over 7 months but have shied away from using it as it frightens me, our life frightens me. My husband has MS and was diagnosed over 15 years ago with Slow Progression MS. He is coping ok but gets really frustrated with not being able to do certain things and so we feel our freedom is really restricted. It doesn’t help as when he gets frustrated he gets angry and i get the brunt of it. I feel bad because i feel really low but can’t say anything to him because i’m trying to protect him from my growing frustrations with life. Am i a really nasty person or does any body else feel the same way who has a partner with MS?
I’ve had PPMS since 2007 I am frustrated and our freedom is really restricted! Life sucks, I sympathise with you both. Try and enjoy the little things in life it’s not easy but there are bits of light in this tunnel.M
Hi I’m new to the forum and I have been diagnosed PPMS for 14 years now and used to feel very angry and frustrated with it all then my (late ) husband had to have a liver transplant ,crumbs what a reality check ! He was awesome , he never complained about pain or his massively altered life and throughout it all we both realised these things can make you stronger if you try to look for the sunshine as we used to say . Little steps and achievements are the things we both focussed on to help each other , we even used to faux smile as an experiment early days, it actually helped as we ended up laughing at each other’s silly expressions. He had his transplant, a bitter gift as it means someone else is suffering a loss. But it was a beautiful gift and we had 6 more turbulent but amazing years.Sadly I lost him and my MS still progresses ,a rough year last year, but I’m still happy to be alive, I remarried another amazing man , life is good, always challenging ,but I try to push out the rubbish stuff and take at least 1 good bit to sleep with me after each day, there’s always sunshine , it’s just sometimes it’s playing nice n seek , don’t give up things can always improve , friends and support groups like this really can help and if a post gets you down, move onto a positive one . I hope you find your sunshine . Huge sometimes with no words can be wonderful too , so sending you some virtual hugs 
I am sorry newbie8 but your on a hiding for nothing.
before i saw my neuro i did the research and new i wouldnt get it. even if i had an mri showing progression i wouldnt get it i know i have had MS at least since 2000. Also my scale is about 7.5 now.
this drug can screw really badly with your auto immune its not worth doing that to yourself if it wont work its just punishing your body for nothing.
If you have progression then at least you have a chance of slowing it down and would take steps to protect yourself. THEY KNOW that once you have had it over 15 years it will be rare to show progession on MRI, as the damage has already all been done, and will just be ongoing so nothing much to slow down if that makes sense.
you posted at beginning of year how are you now? did you find out anything? xxx
thats how i see it anyway.
there is another drug mentioned here why not investigate that. i am sorry for you but i went in with my eyes wide open and i knew when my neuro mentioned it to me he was just going through the motions.
I wasnt going to put myself through a ton of tests for nothing.
the side effects put me off even if i did qualify. they have no idea yet how it will slow down progression and to what extent as its a new drug. I am not or would not be happy to be a guinea pig.
If it was one of the long standing drugs then its different.
Oddly enough i have seen good reports for Ocrevus for RRMS, go figure.
Hi all
ocrevus is the first drug for progressive ms. I have ms for
over 20 years. I have been on treatments for the last ten years.
Rebif, copaxone. Gilenya. I hit a brick wall 3 years ago and started
to go downhill . Possible transition into spms. Walking a real problem as distances got less and
less. Had to give up work. Started using wheelchair on bad days.
Started Ocrevus last year. I have had two infusions. Will be on treatment
a year on May. Life changing for me.It gradually improves everything
especially walking. It gives your body a chance to heal to whatever
level that may be. I realise this could be different for everyone.
I am thankful for all the hope that these new drugs are doing
for families. I have got my quality of life back. Try to
stay positive and keep fighting.