Ocrevus = visit neurologist anyone on this PPMS?

Everyday living
1

Morning guys, well I saw my neurologist yesterday after 3 years. He greeted me with my Christian name (very impressed) and seemed really pleased to see me. I have to say cough cough I feel I have faired better then he has lol. He looked really tired and drawn. He said his kids were driving him mad always bickering lol. I have been with him since one of them was born so he must be 10ish now that golden age.

Anywoo I told him about the loss of my husband. He then went on to say the MS nurse had asked him to see me with the view of perhaps starting Ocrevus. Now he said it comes with very strict criteria before you can even decide. One of them being progression, so would need all sorts of new tests and no guarantees after all that i would go on it. There is no real age limit to it anymore but like he said it was felt that it was less likely to work the older you were. I am 68 in 2 weeks.

There are other strict criteria too with regard to disability status. There are no guarantees if i was accepted it would do anything either.

I had already read up about it. He gave me some stuff to read, and wants me to just take time over it and when i have decided to ring him and let him know so he can get things set in motion.

Then we talked about pain meds. He did mention sativex but said the trails of it are not coming back from conclusive, the people on the placebo seemed to fair better then the ones on the sativex which is not very encouraging. I talked to him about cbd oil, but he said unfortunately there doesnt seem much about its affects as not many people are reporting back about it.

I told him I was coping really well at the moment had made peace with myself and my illness and was doing my own thing which at the moment seemed to be holding back the tide it was just really the pain i was struggling with at times especially with the heat and my ongoing bladder issue which i have an appointment to see urologist in august.

Anyway I was in there ages and we had a really lovely chat and I am staying on his books.

So anyone on here on ocrevus either with RRMS or PPMS and any feedback. I was worried about the auto immune attack as it seems it can trigger quite a few not so nice things, and at the moment for the last years I have loved and cosseted my immune system and looked after it and it has rewarded me, with very few if not non really colds etc.

I am not sure I will benefit from this drug now. Do i really need to rock the boat to try it? I dont know. I wish hubby was alive he would have talked me through it. My daughters are not sure either.

I know everyone has different reactions to drugs etc i just want a general over view of the drug and its affects etc.

Stay well all of you, he said there is a lot of research going on at the amount with MS which is encouraging.

2

Hi there! I’m 69 and just diagnosed with PPMS, but my neurologist told me that there were no drugs available for me which didn’t have nasty side effects. I too read up about Ocrevus but decided it wasn’t worth the risk because apparently it can increase the chances of getting breast cancer (I have a family history) plus getting respiratory tract infections (I have COPD). So you can see why I chose not to go own this route. I also have coeliac disease, so my immune system is already compromised. However, we are all different and you may decide that this drug is for you, but I agree that it’s a difficult decision to make. I’m glad that you have such a lovely consultant who is obviously doing everything he can to help. So take your time before deciding and perhaps draw up a list of pros and cons which may help. I wish you well and lots of luck.

1 Like
3

Ocrevus You are right to ask about it on this forum because you need as much information about it as you can get before making any decisions. Wonder if your local MSS branch could help - they may well have members on it. To some extent anyone taking a new drug is a guinea pig - wonder if neuros actually keep statistics re. it’s efficiency (or inefficiency!) The possible side effects would bother me although I guess most people don’t have major problems. I would try to find out what is the worst thing that can happen to someone on Ocrevus and what percentage of people on it have major problems. Things compounded because someone may hit a good patch or a bad patch with the m.s. regardless of being on, or not on any drug so you can’t be 100% certain that the Ocrevus is responsible for everything. Were I given a choice my head would say don’t take it - my heart would say take it! Ultimately you will have to go with your gut feeling.

1 Like
4

I was offered Ocrevus… thought about it and decided I’d be an idiot not to accept. Four years on Rebif (beta-interferon) obviously wasn’t holding it back any more, and the rebif was triggering depression in me as well. Two infusions of Ocrevus at half dose at the end of Jan, and the recent full-dose, last week - no bad reactions etc, and all went OK. And if it had caused a bad reaction, I was in the hospital surrounded by health-care professionals who would know what to do… Just take a good book to read and be prepared for a long day! They won’t even start preparing the drug until you’ve checked in at the hospital, as it’s too pricey to waste on no-shows. My hospital anyway; might be different elsewhere…Edited to add, I think I’m still RR, but get the feeling that I may be Sec Progressive, although no-one has come out and said as much…

5

Having had treatment for breast cancer last year it won’t even be prescribed to me. I’d have loved to have had the chance.

6

Im PPMS and I’m hoping to have it if I’m eligible. Apparently NHS England conditions haven’t been released yet. I saw my consultant last week and he says I’m on his list as soon as NHS press the go button. The hospital I attend has even got one dose of the drug in stock already. I’ve looked into it and decided that I’m prepared to go for it. I’m almost 68 and have been diagnosed just under two years.

7

That sounds like an excellent appointment CC.

I’m not sure about Ocrevus. Like Krakowian, my head would say no while my heart would say yes. I’ve just had another look at it. The NICE criteria are that you have ‘Early’ PPMS (<15 years), have MS activity on MRI scan, can walk 20 metres and are under 6.5 on the EDSS (Expanded Disability Status Scale). I’m not convinced that it’s worth the risk of the possible side effects for most people with PPMS.

But you need to make your own decision, and of course even then, you may not qualify for the drug. Have a look at https://www.mstrust.org.uk/a-z/ocrevus-ocrelizumab and https://www.nice.org.uk/guidance/ta585 - they might help. Or not!

The thing about Sativex and CBD is that many people have had positive experiences with both. So while there’s no convincing trial data, it might be worth trying either. At least you know that taking a cannabinol won’t give you terrible side effects that will affect you for years to come!

It’s still brilliant that neurologists are actively starting to look at prescribing Ocrevus.

Sue

8

Hi flopsy i had no idea about the link with breast cancer so that rules me out then. My uncle in italy had breast cancer and recently my older sister has had a double masectomy.

I dont fancy stirring up anymore rubbish in my system. why dont they make these things more available the information. I have spent days ummming and ahhhing over it, but if there is a posibility it has a link to breast cancer i am out.

to be honest from what i have read from others you really need to catch this disease early and be under 65. some people have said they felt it made their walking worse.

others have been hit by flu and shingles.

it has been the issue with auto immune that was putting me off as i love my immune system and look after it as i need it to work for me not against me.

thanks hun. xxx