Hi sorry quite new to this i have been on plegrdy for 2yrs now but since having a new episode March gone i have been giving a choice of 2 new treatments and was wondering if any1 can give me some advice they are Mavenclad and Ocrevus. Thank you
Hi Laurie,
Sorry but I can offer you no useful info. I am sure there are some wise and experienced folks here who will happily shre knowledge & opinions.
Good luck
Mick
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hmm i was hoping someone might have shared their knowledge by now. I tried some basic searching for you Laurie but made little progress. We need the help of one of the smart ladies and gents who stalk these forums.
Fingers crossed.
mick
Hereās one of them turfing up, to say āYes, Iām on Ocrevus infusionsāā¦ ask away! I donāt know if Iāll be able to answer any questions, but perfectly happy to share the experienceā¦ and I wasnāt ignoring anyone, just been at work (working from home) - but thought it best not to answer queries on work time!
I had bad experiences with the first two half-doses of Ocrevus, so Iām probably not the one to offer advice. Iāve opted to stay off all DMTās, at least for now, but I also had MS for 40 years without a diagnosis. So, Iām pretty much past the age of being able to use them successfully, not to mention that weāre wondering if Iāve moved from RRMS to SPMS.
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Do check out the side effects Laurie. Some can be quite troublesome.
Boudsx
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Hi Laurie
Have you seen this: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid ? It lists all the available DMDās and their side effects as well as method of taking and expected relapse reduction rate.
I have a feeling that in the current Covid climate, getting infusion drugs is less likely than self injectables and oral therapies. Since youāve been on Plegridy and āfailedā (ie started relapsing while on the drug), it does make sense to move to a more effective drug.
Iāve not taken either drug, so canāt help with personal experience, just with some facts about the drugs.
Mavenclad is an oral drug (so more likely youād be given it than Ocrevus). It has a relapse reduction rate of about 50% which is similar to Tecfidera. But unlike Tecfidera, you take the drug only twice, a year apart. (Tecfidera, is daily.) There are some pretty nasty side effects, unless youāve had TB in the past, the really bad one could be lymphopenia. This is a reduction of your lymphocytes, these are the kind of white blood cells that fight against viruses. As the drug is taken a year apart, this is likely to mean your lymphocytes would be depleted for quite a long time - this would be a pretty bad thing given the Covid times we live in!
Ocrevus is conversely, given by infusion. Depending on your hospital, itās possible they might not want to start an infusion based therapy right now. Itās more effective than Cladribine (70% expected relapse reduction rate). The problem with it is that it is an immune suppressant. This means that you are at greater risk of viruses!! (Again!)
What I think you need to do is talk to your MS nurse and/or neurologist about exactly what is available to you right now and what the ramifications are with regard to increased risk from viruses.
Best of luck.
Sue
Cheers Sue I was hoping you would share some quality info.
M
Hi Laura. Why havenāt they offered you glatiramer-acetate? That, as far as my investigations go, may not be the most efficacious on paper, but has no immunosuppressant qualities, is well tolerated and is the only DMT which has had enough data on it to prove it is in fact effective.
For all the long term data on MS DMTs now, most have been shown to be expensive and dangerous placebos. Ask them about it as an option.
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I am that person 
!!
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Thatās a really good point, there are some serious considerations to taking immune suppressants just now. I suspect the main school of thought is that if level 1.1 DMDs arenāt working, the answer is to move onto the next level, ie the 1.2, or the 2.2s.
Copaxone/Brabio certainly does not have the same immune suppression, but only has the same relapse reduction rate as Plegridy. Plus, it can have side effects of its own. Ie lipoatrophy and ISRs - I had to stop because of ISRs.
Another alternative would be Tecfidera. Yes, it can lower lymphocytes (as with Cladribine), but theoretically at least, it leaves your body quicker, so lymphocytes recovery faster. In my case it took a good 6 months to get back to ānormalā levels, but perhaps the neurology professionals need to keep a much closer eye on lymphocyte levels and stop the drug sooner. And of course, Tecfidera is in the same class (2.1) with the same expected relapse reduction as Cladribine.
There are other drugs which do not lower immune reactions, ie Tysabri, but itās possible that infusion type medications are not recommended right now - the least amount of time spent in hospitals the better I think.
Sue
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Awe thank you for your response i have decided to go for mavenclad
Thank you for replying stay safe
Thank you i have spoken to my MS nurse and came away with books but i am still unsureā¦ I made a decission to go with mavenclad which means i so have to shield for 12wks small price to pay if it works fingers crossed
im not sure why, sorry just seen your reply
Thanks for the information i was diagnosed with MS 2yrs ago went straight onto plegridy and chose to put to the back of my mind as i had a terrible time the previous 2yrs not knowing what was actually wrong with me, might sound daft but was a bit of relief when i was diagnosed atleast i knew what was wrong with me and it might sound daft again but i think i have been in denialā¦ But March gone i knew i was having another episode and again was a relief to get the results of my MRI which i got whilst having this 1 as sometimes its a reminder that i am not going mad and that this is actually happening to me but i still choose not to read too much into things which is absolutely crazy as when faced with decisions like this im like omg yes you do need to address this as its happeningā¦ thank you again much appriciated
Sorry, called you Lauraā¦ 