Forum

Finally Diagnosed & DRUGS mentioned!!

Well today I had follow up with MS Neuro and he has finally committed 100%to a diagnosis of RRMS which he called “Active” as evidence of at least 2 relapses between Nov 17 and July 18, with lesions still enhancing on MRI in Jan this year albeit the same ones.

He is going to write to my GP for me to recommend Nortryptiline whih he thinks will help with Nerve Pain, Spasms and Sleep (Oh how wonderful if it does!!)

He asked what I wanted from a DMD and I expressed that as I am still actively parenting 2 teens with Autism and this involves currently actually taking one to work each day etc, that I could really do with avoiding day to day yucky side effects which might make me feel low level crap all the time.

He is recommending Ocrevus - which is rather a surprise as I thought that due to cost this would only be available to those for whom other DMDs hadn’t worked (about £19k a year!!)

But he said it is 2 x year infusions with maybe a couple of weeks feeling awful but 90% of the time feeling ok.

He is finally referring me to MS Nurses and said I can still have final say on which DMD but he thinks Ocrevus best option. Bear in mind he is at a teaching & research hospital with a bespoke MS research centre , so wonder if I am to be a bit of a guinea pig???

I feel perversely relieved with my diagnosis. I think he had to tick and cross every possible box, as I assume he now has to apply for funding for Ocrevus and probably has to rove beyond all doubt that his diagnosis is correct.

Woohoo Minnie. I’m glad (that you’re glad). Finally an end to limbo. And Ocrevus is a great drug. It’s licensed for Active and Very Active MS and can be used as a first line drug. It can reduce relapses by up to 70% and has all sorts of add on benefits. Have a look at https://www.mstrust.org.uk/a-z/ocrevus-ocrelizumab

So don’t worry about being used as a guinea pig. There are plenty of people who’ve taken it. (And survived!)

I think you may have had to wait and worry for all this time, but your reward is a really good DMD.

Let us know how you get on. And just keep talking to us.

Sue

I,m so surprised he is recommending Ocrevus due to the cost!!

Would really welcome experiences of Ocrevus and/or Nortryptiline from any others who have had them. Thankyou Sue, for always supporting and replying to everyone on the forum - it means a lot xx

Doctors often think Nortriptyline is better than Amitriptyline because the side effects are better tolerated. But I’ve been told that Amitriptyline actually does work better (and I think that’s true having had both), you just have to take the pills at the right time, but see what others think and you definitely need some views on Ocrevus from users.

Sue

I just started Ocrevus in April so if you’ve any questions ask away. I’m no expert but can give you my perspective. It’s not been all plain sailing though and did feel rough after both half doses. Hoping short term pain for long term gain.

Smurf I would love to hear your experience of Ocrevus if you are happy to share. I did read that side effects are most likely for first couple of doses. If you would prefer to private message me that’s fine.

So much to think about!!

Trying to pm you but it keeps being blocked.

Apologies as I’ve not read your previous posts so don’t know if you’re in the U.K. I am so my experience is based on that.

I needed bloods and urine before starting Ocrevus and had to bring a urine sample on the day to check for infection/pregnancy (hope not as I’m 50) I joined closed Facebook groups which was useful for advice for the actual infusion. Best advice was to hydrate well before during and after. First dose is given as 2 half doses a fortnight apart. It’s then a full dose 6 monthly. I had my 2nd half on Monday. I can’t say it’s been that easy though. After the first half I felt very rough - tired, achy, sick and dizzy like being hungover with the flu. I spoke to my MS nurse and added in an antihistamine to the paracetamol and ibuprofen I was already taking. By the end of the week I got antiemetics from the GP. This week was better symptom wise but I’ve kept dosed up regularly.

With regards to the actual infusion be prepared for a long day. They premed you with paracetamol and antihistamines orally and IV steroids. The half infusion takes at least 2.5 hours. They do your obs every 30 mins and increase the rate if you’re ok. My 1st infusion I developed an itchy throat so they kept it slow. 2nd infusion no side effects during the infusion. The full infusions are infused over at least 3.5 hours.

If there’s anything specific you’d like to know please ask. Good luck with it x

You’re of similar age to me - I’m 52 and definitely not preggers!!! Sounds like it may be worth getting prepped in advance then wth anti emetics etc etc.

I’m a bit of a wuss when it comes to side effects, but I guess a couple of weeks of feeling awful is worth it if it prevents relapses and progression.

Yes I am in UK, in Staffordshire by the way. Thankyou for sharing with e, I appreciate it very much. Hope you feel better very soon!

Minnie xx