Last reply 2 months ago
Ocrevus – Friday if all goes to plan!

I am scheduled for my first dose of Ocrelizumab this Friday. It has been a long campaign to get this. Am happy to share in DM’s but don’t want to subject y’all to an unsolicited shaggy-dog story about it. As with most things MS related, it is relevant to me but there are few details that can be taken and applied to any other situation, as it is rarely that simple or that similar.

What drove me to petition for it is the idea – as espoused by Prof Gavin Giovanni, and other leaders in the field – that treating MS ought to involve ‘Inverting the pyramid’ and getting in as soon as possible with the most efficacious drugs as possible. This is in contrast to the established approach of intervening lightly and working up to the most efficacious meds. I have had a long think about HSCT and been dissuaded by the team at the research hospital I go to- notwithstanding the fact that I don’t have a spare £50k tucked down the back of the sofa for private treatment in the UK – to hold off on that for now.

I am 49 (just) and have had RRMS for 25y. Statistically I am v v likely to relapse into SPMS soon. I have had steroids (oral Prednisilone), a long break then Beta-Intertferon (Rebif) until it was deemed that the neutralising antibodies are likely to have negated the efficacy of the drug, to Glatiramer Acetate (Copaxone) which I didn’t tolerate v well regarding injection site reactions that wouldn’t go, leaving me looking like I had been savaged by bees, to the CONFIRM trial for Dimethyl Fumurate (Tedcfidera) until it ended and Biogen agreed to fund participants for a 5y extension with certain active ingredient. Biogen then unilaterally pulled the plug on that and rather forced everyone’s hand.

On top of that I have gradually added to the pile of drugs as I take a 30mg Duloxetine once a day to keep neuropathic pain at bay (it doubles as an anti-depressant, though my wife thinks I am just as chipper and annoying now as I was before) as well as Modafinil 200mg (prescribed by an MS specialist in London for fatigue) and a high dose Cholocalciferol (Vit-D) of 10000iu every other day to keep a level of 5000iu in me.

I am looking forward to losing at least 4 of my daily pills, and possibly another 2. As well as that I will welcome the absence of the flushing that I get and the tummy upset.

The hospital that I am seen at has developed their own administration protocol that builds on the established one. I think they may be being overly cautious. However, better that than a cavalier disregard for safety!

To date I have had to give 13 vials of blood for testing, have an ECG two days ago, a chest x-ray, two supplementary vaccinations for HiB (only way to get it was in a combo jab for meningococcal – used for babies) and a pneumoccocal vaccine. If you are in the UK and they request you get Pneumovax 2 from the GP then be aware that the manufacturer – Merck Sharpe & Dohme – MSD) has terrible suply problems and it may be out of stock. Don’t let that stiop you as I pointed out that a protocol with an unobtainable product looked like an attempt to restrict use of Ocrevus! I offered to write to the head of the Trust asking why this was and suddenly they swore that wasn’t the reason and allowed me to get a similar jab made by Evans called Pneumovax.

So, unless I have contracted a lurgy in the meantime I ought to be good to go on Friday.

I was told to expect to take almost a full day the first time as they will give me IV steroids, a break, IV anti-histamine and a break and then the 300mg IV Ocrelizumab.

Assuming it all goes well then,
Will keep y’all updated.

Best,

Dom

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vixen
2 months ago

Hi @dominics, wishing you all the very best for your next step. There is no doubt around the efficacy of Ocrevus. What would be great would be for you to update us on how you actually feel in the weeks after. I’ve read a few reviews where people say that their symptoms actually appear to improve after having Ocrevus. So let us know! What a way to start the New Year…… 🙂


dominics
2 months ago

@vixen , thank you. I’m sure it’ll all be fine. Just been the most monumental drawn out faff at times. Finally here, which is a relief.

I have heard similar anecdotal reports to you regarding improvements. I am guardedly optimistic. I don’t want to my hopes up. This has just been published: https://www.neurologyadvisor.com/multiple-sclerosis/no-evidence-of-disease-activity-neda-3-and-disability-improvement-with-alemtuzumab-ms/article/823868/

Happy to tell you how I feel. I have to stress to anyone reading it that it may not be how they feel. MS and the treatments aren’t as reliably similar as fixing a broken arm or many surgeries. One person is informative, the large studies are more reliable though.

I fully expect to get an upper respiratory tract infection at the very least! Easily treatable though.

Best,

Dom


grandma
2 months ago

Hope all goes well Dom, we’re all rooting for you. As a 25 yr mser myself, still fighting the possible onset of spms, so anyone who gets good results from trying something new is of great interest. I was on Beta-Inferon (Avonex) for 23 years, got changed to Tecfidera a year ago. Haven’t had major problems like you only had the usual itching, flushing and bad tum for the first 6-8 was, all gone now and I’ve been fine for 8 months so feel quite smug, but I do hope that things go allright🙏🏻🤙😍


longboat
2 months ago

Good luck with everything. Please let us know how it goes…
Best,
Rachel


smurf69
2 months ago

Good luck for Friday @dominics. Do you mind me asking why you chose Ocrevus and not lemtrada?


dominics
2 months ago

@smurf69 I went to a London consultant with the intention of asking about Alemtuzumab.

He said that in principle it was a good idea, but for my level of progression and history he felt that the risk/reward was too great.

He said the risk of liver issues was too great – please bear in mind this is an individual issue and not a remark that can be applied in a blanket fashion – and that Ocrelizumab was months away from being licenced and I ought wait for that.

So I did!

Best,

Dominic


smurf69
2 months ago

@dominics you seem to be very knowledgeable which I’m sure does help. Please let us know how you get on ☺️


dominics
2 months ago

@smurf69 I spent many years working in pharma and seem to be friends with many medics.

You learn what to ask and where to go for answers I guess.

Things just seem to work out in ways you can never forsee.

Best,

Dominic


grandma
2 months ago

Hi Dom, how’s the day gone? All ok?😍


grandma
2 months ago

Sorry, just realised It’s only Thursday, ignore me 👹


dominics
2 months ago

@grandma you are in good company. A friend wished me luck on Monday a few moments ago.


vixen
2 months ago

All the best for tomorrow @dominics, headphones, lots to read, chocolate aplenty…. 🙂


dominics
2 months ago

@vixen Headphones on now with some relaxing AC/DC playing. Beastie Boys is cued up…

I have my Macbook. Loads to write as I have to review a draft report for the NIHR. Dull…

Sitting in the infusion suite at the JR Neuro wing. I’ve been consented now and the first thing has gone in: Claritin (loratidine), an anti-histamine to mitigate any potential reactions. Now 0933h. In about 15 min I get a whack of steroids and then the drip goes up with the good stuff in. I can feel it making me slightly sleepy, a known effect of anti-histamines.

I’ve bought my own coffee in a flask, books, Downloaded films and podcasts, fully-charged headphones. Frankly, I’d appreciate a jolly good sleep now. I always like a lie-down!

By God I’m grateful for the NHS. It is awesome.

Dominic


smurf69
2 months ago

@dominics, glad it’s going ok so far 😊 Please keep posting during the day if you’re awake that is 💤


dominics
2 months ago

@amirk69 – Claritin makes me a little dozy, nothing serious. Presently I am on a 30 min infusion of steroid, Methylprednosolone.

I then have 30-50 min off to stretch my legs.

So far it is all going well.

Br,

Dominic


dominics
2 months ago

Methylprednisolone I mean…


dominics
2 months ago

So, it seems that I am the first one in Oxfordshire to get Ocreluzimab. Following about 2h behind is a young lady that seems to have been on the ward as an inpatient.

After the Piriton (chlorphenamine) – I was wrong, it wasn’t Claritin – I had the steroid (methlyprednisolone) and now I am getting the real deal.

Now it is 15 min observations of temperature (thing in the ear), blood pressure (the cuff) and pulse-ox (heart rate and blood oxygen saturation done by the little finger clip thingy).

Things seem to be going well as my nurse turned up the flow rate a bit.

I am so excited. Better than Christmas. For 25y we (the UK) has lagged behind the US in terms of treating MS. It seems that Prof Giovanni has led the change with his concept of Inverting the Pyramid regarding intervention strategy.

I was really worried that as I aged and as treatments have been shown to be markedly less efficacious past about 51 or 54 (can’t remember) I wouldn’t manage to persuade the team to take the approach of ‘best first’.

As I sit here and type I can’t feel anything odd. The slight drowsiness from the anti-histamine is passing and my pressing concern is to avoid snagging the line as it can make the arm a bit sore (speaks someone who has done it before when on morphine for a broken femur).

I shan’t write anything again from the hospital as presently it is very dull (a good thing) and there is little else to say.

I’ll mention if something of note happens, after I’m home this evening.

Timescales: about 4.5h of infusions so far as it is v nearly noon.

Br,

Dom


smurf69
2 months ago

@dominics I’m really pleased that it’s all been ok today. When are you planning to return to work?


dominics
2 months ago

@smurf69 Am self-employed atm but interviewing for jobs as well. I am playing it by ear regarding how I feel. This is a leap onto the unknown for me. Usually I tolerate things v well. Time will tell. The dosing machine is running at 1/2 speed atm. It will be wound up after the next few observations.


smurf69
2 months ago

@dominics, good that it’s a Friday too as gives you the weekend. I’m between Ocrevus, lemtrada and tecfidera so was just curious about recommended time off work. Guess you’ll have 2nd 1/2 dose in 2 weeks.


vixen
2 months ago

@dominics, just read your earlier post: there must be cosmic interference supporting empathy as I randomly listened to ‘Powerage’ this morning. Rock on…..

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