Hello, I’m new to this so bear with me. I’ll try and keep it brief. My partner started with the symtoms of MS in Sept 2012, totally out of the blue. She was officially diaganosed around Feb/Mar 2013. Since her first symtoms she has continued on a rapid decline. Throughout her diagnosis I have been waiting and hoping for her to her some sort of remission but it hasn’t happened. She’s had numerous courses of steroids, including very high doses intravencley. She’s had a plasma exchange. She was on avonnex for about a year and she has recently started on Fingolimod. Nothing has stopped her decline. She lost the use of her legs in Sept/Oct 2013 and that hasn’t improved. Other than hospital appointments she hasn’t been out of the house since Sept 2013 as she can’t sit up for long or go on car journey’s due to a terrible pressure and pain in her head. She’s displaying ALL the symtoms of severe MS described on this on this site and has done for a while.
Initially she was diagnosed with relapsing remitting MS but we haven’t seen a remission. The specialist says that she having attack after attack in rapid succession. It’s awful to see how she’s suffering and I want some sort of light at the end of the tunnel. She seems to have got worse since starting the fingolimod. She was only 36 years old when diagnosed and is only 38 now.
She has recently started having problems mentally in terms of expressing herself, speech problems, memory problems which have led to a personality change and I’m worried she’s not going to return to herself.
I hear a lot about people with MS who only have a few relapses or go long periods between and essentially lead a ‘normal’ life, this has not been the case with my partner.
Has anyone been through a similar situation and more importantly did it improve?
I am so sorry your partner seems to have highly active ms.
I feel her ms needs to be hit really hard with the drugs. Have you discussed treatment options with the neurologist?
It doesn’t sound like the avonex/gilenya is working for her.
If i was in this position i would be asking to try Tysabri. I might even be pushing for Lemtrada (this has only just been licenced but i believe it should be available around September)
The ms needs to be hit hard with the stronger drugs before she moves from relapsing remitting ms to secondary progressive ms. These drugs do not work for secondary progressive ms.
I really hope you can get some help to stabalise your partners ms soon.
Go back to the neurologist or ms nurse and ask if these drugs are an option. There might be other options available also that i don’t know about. Get as much information as possible so you can make informed choices.
If you don’t get any further then ask for a second opinion.
Thanks for the replies, it has cheered me up no end knowing that there are people out there giving their help/advice.
She was offered tysabri, in fact the neurologist was pushing it really. However she was JC virus positive so was reluctant and hoped the fingolimod would work. We’re seeing the neuro next week so we’ll see what he says. I’m not sure whether she’ll want to give the fingolimod time first before trying anything else. I’m still hopeful myself that it may still work.
I’m also hopeful that her mental decline may be a side effect of the drug.
Thanks for the replies, it has cheered me up no end knowing that there are people out there giving their help/advice.
She was offered tysabri, in fact the neurologist was pushing it really. However she was JC virus positive so was reluctant and hoped the fingolimod would work. We’re seeing the neuro next week so we’ll see what he says. I’m not sure whether she’ll want to give the fingolimod time first before trying anything else. I’m still hopeful myself that it may still work.
I’m also hopeful that her mental decline may be a side effect of the drug.
I’ve messaged you re HSCT which is availible on the NHS for rapid, highly agressive RR MS. The NICE guidelines for it state second line DMD’s need to have failed first. Its a risky procedure but well worth a discussion with the neuro given her rapid and severe onset. In the meantime I would not rule out Tysabri.
I had four relapses since changing to Gilenya (fingolimod) after a pretty steady course with Rebif (two relapses in 2012 though hence the switch) so I have nothing good to say about that drug.
Please, please definitely beg her to reconsider Tysabri and/or seriously think about Letrada. Like Teresa says, your wife’s MS sounds highly active. The possible side effects of both are, of course, massively concerning but high risk, high gain. They are the big guns - the real life changing drugs - but it is vital she makes a decision soon. Once you cross the line into SP, these drugs won’t work. I know it all too well having worked with someone else with MS who dillied and dallied, wanting to go down the hollistic route, terrified of anything that may make her put on weight (don’t even get me started on that one!) but, in the end, she left it too late and by the time she started on a DMD, I strongly suspect she was already in SP and her decline was rapid.
Good luck next week with the neuro. Make sure you both clue yourselves up with as much information as possible before you go.