MS in all its glory

amallen

Has anyone come across a person with ms whose personality and behaviour have changed radically since being diagnosed and treated for ms about 3 years ago?

byhookorbycrook

No, but personality change can be a symptom of PML, are they on Tysabri?

JohnMearsheimer

Does anyone know if your employer is obliged to give you time off for scans and consultations? As in the time off you take for these things doesn't come out of your annual leave. Thanks.

byhookorbycrook

I get certs so that covers me.

Blinder

Do people find that their neurologist is open to them changing drugs?

Currently on Rebif. Only for the last 2 months, but since switched to full dose the side effects are getting more severe ( aches , pain, fever, nausea, sleeplessness). Neurofen works to keep the aches, fever and pain under control but not the other side effects. And it's getting harder and harder to physh myself up to inject myself, and to find an area to inject that isn't red or bruised from previous injections.
Have being looking at different drugs available in ireland and would like to be considered for either tysabri or tecfidera. Both are twice as effective at reducing lapses compared to Rebif. The tysabri seems to be the most effective currently available here, and if it suits me, taking one day off work a month can be managed.

Have an appointment next week with new neurologist.
Also going to mention when there that currently I can't walk far without legs feeling weak and wobbly. Currently managing this just by not walking very far but it's not really a long term solution!

My life at the moment is getting up, going to work, coming home from work and then going to bed about 8pm. And then spending the weekend recovering from the week at work.

ash23

My neurologist was very quick in moving me from copaxone to gilenya but I'd had a number of relapses on copaxone combined with new, active lesions on my mri. So the copaxone wasn't really working for me and the neurologist was fairly proactive in changing to gilenya or tysabri. Tecfidera wasn't an option at the time.

I think had copaxone been working for me he would not have been open to changing because while the likes of tysabri and gilenya are more effective, as far as I know, they're also higher risk and more expensive so can only be prescribed when a first line dmd isn't working and progression is occuring. But I'm open to correction on that.

No harm broaching it at your next appointment though.

byhookorbycrook

Tysabri is not used as a first line treatment due to the danger of PML. It's unlikely you'd be changed on to it without relapses and new lesions, but worth asking. A new treatment called Lemtrada is coming on line here in Ireland now, it seems to offer some great results, but means hospitalisation for about a fortnight at least twice , plus it is does , like all the DMTs have some serious side effects too.

"Tysabri is given to patients with highly active forms of relapsing-remitting MS or those who have failed on other disease-modifying therapies. ‘Highly active’ is defined as two or more disabling relapses in a year and the presence of more lesions on the brain in an MRI scan."
http://www.ms-society.ie/pages/living-with-ms/treating-&-managing-ms/disease-modifying-therapies

coughdrops

I didn't get on with Rebif at all, and after around 2 months I had a reaction which made my neck/face really red and hot- I could see it spreading up my face. So I was taken off it and moved on to Copaxone. I can honestly say the only side affects I've had (or, I should really say "noticed") is soreness in the injection site, but the injection sites are smaller than with Rebif, and easy to move around from tum, bum, thighs. The Rebif reactions were more sever in my experience.

Copaxone is currently on daily injection, but my nurse has told me that they are offering a 3-day/week option from (I think) this month on.

Edited to add- I didn't have any relapses or progression on Rebif, they were happy enough to change me over once I'd gone all hot

byhookorbycrook

I'd be a bit concerned over having to inject less..is the dose stronger? (I mean I'd have loved to have to have injected less, of course, but only if less was as effective)
ETA: I know when the initial PML thing broke, some neuros in the States suggested patients take tysabri less often and in some cases even give it up for a "break" and it was a disaster.

coughdrops

I think it is going to be a larger-volume dose, rather than a stronger/more concentrated one, if that makes sense. I could have picked that up wrong. (and I don't know if one it makes a difference either way)

When the nurse told me, I said I'd rather stick to 7 days, as it's part of my daily routine. On 3 days, I'd be more likely to forget it. I might look into it though for convenience of not having to take needles/sharp bin etc when we go away at weekends, but like you say I don't want to compromise the effectiveness

byhookorbycrook

I used to have to carry my betaferon in an chill bag and ask hotels to put in the their fridges when we went away, I think the entire staff used to have a gander at what was in the bag as they all seemed to know it belonged to room X.

ash23

http://www.ms-society.ie/blog-articles/1823-copaxone-new-formulation


MS Ireland had this info during the week

byhookorbycrook

That's good to know. I had a bit of a falling out with a drug company nurse who told me I should Look Forward To Injecting Because It Is So Good For Me. HA!!!!!!!!!!!! my husband used to do the injecting because I found it hard to push the plunger, not due to MS weakness but due to the pain. When he wasn't here, I used to text some of the horse crew and tell them I was having enough Dutch courage to make me do it, but that if I didn't text back in 30 mins I was either a) too pissed or b) too scared. Nothing like the thought of a person used to injecting a horse(have you SEEN those needles??!!) land on your door to encourage you to get on with it!

coughdrops

I don't really feel the needle, and I know now which points on my arse and tum that don't hurt at all, but still at times it feels like a bee sting for ages. Not to frighten off anyone waiting to start their meds! I've a fat arse, I think that helps :-D

I had to get an injection at the out of hours doc last year, as I'd stupidly done in my ankle and the pain was unreal. He was (kindly) explaining why he had to do it, checking that I didn't mind needles etc.

I nearly told him to "give it here, I'll do it myself".

byhookorbycrook

LOL, I know what you mean. I was in a local hospital-I get my Tysabri elsewhere -and I was able to stop the infusion machine and unplug myself to go to the loo (and when I gotta go, I gotta go NOW.) The ward nurse thought I was a nurse.

coughdrops

and when I gotta go, I gotta go NOW.

Meet your sister

tippgod

Hi. I am making an inquiry for my dad. He is 65 and has multiple sclerosis. He has a medical card that covers this but he is wondering does he need to get out medical insurance on top of his card. With the new medical healthcare deadline coming up, he is unsure about it. thanks

byhookorbycrook

Is he on a disease modifying drug? I have VHI and need it as it covers my Tysabri, MRIs etc. With a pre-exisiting condition, he might need to pay for a few years without benefit.

Sunny Dayz

My husband has been recommended the treatment Gilenya by his neuro-consultant. Any Boardsies on this and how do you find it?

Closov

tippgod wrote: »

...does he need to get out medical insurance on top of his card. With the new medical healthcare deadline coming up...

I honestly couldn't say, I didn't even look into this deadline until you posted, and I see there is a lot of confusion about it. Something maybe we should all be taking a close look at.

byhookorbycrook wrote: »

Is he on a disease modifying drug? I have VHI and need it as it covers my Tysabri, MRIs etc. With a pre-exisiting condition, he might need to pay for a few years without benefit.

What benefits has having VHI given you for dealing with your illness?

I found it was no help at all and dropped it straight away - I'm still very disgusted with all the money I gave them over the years only to find they were of no benefit during and after my diagnoses.

Once I went public I couldn't believe how much better I was treated and how much better access I now have to medicines (like getting Tedfidera early) and services (like MRIs).

But I appreciate someone could have the opposite experience. Can you say, for sure, that having VHI has been better for you? and what is better about it? Isn't Tysrabi available on the public scheme too?

Salmotrutta

Sunny Dayz wrote: »

My husband has been recommended the treatment Gilenya by his neuro-consultant. Any Boardsies on this and how do you find it?

I'm on Gilenya about 8 months now. First treatment for me, I was put straight on it without having to go through any of the injectable drugs first. It's been great so far, zero side effects whatsoever. Have had a couple of heavy colds over the winter but nothing too severe. My last MRI showed no new lesions and actually reduced size of existing lesions - due another one soon so hopefully that continues. I realise mine isn't a long term experience so good to get other views on it too.

Closov wrote: »

I honestly couldn't say, I didn't even look into this deadline until you posted, and I see there is a lot of confusion about it. Something maybe we should all be taking a close look at.

What benefits has having VHI given you for dealing with your illness?

I found it was no help at all and dropped it straight away - I'm still very disgusted with all the money I gave them over the years only to find they were of no benefit during and after my diagnoses.

Once I went public I couldn't believe how much better I was treated and how much better access I now have to medicines (like getting Tedfidera early) and services (like MRIs).

But I appreciate someone could have the opposite experience. Can you say, for sure, that having VHI has been better for you? and what is better about it? Isn't Tysrabi available on the public scheme too?

I'm with another healthcare insurer but same principle applies. I wouldn't be without it. I've gone private for my care and have never had to wait more than a week or two for MRIs, have been admitted immediately whenever I needed steroids, and my neuro is always available in case I need him. From speaking to people in the public system, they wait much longer for MRIs and appointments. Treatment wise it's probably much the same as the LTI scheme covers medication, but for peace of mind and knowing I can be seen straight away if I have a relapse I wouldn't dream of dropping mine.

byhookorbycrook

Without VHI I would not be getting Tysabri, simple as. Our infusion centre only has a small number of patients and we have our neuro there every single month. Contrast this to a public hospital I know where the number of patients is capped, so no -one gets Tysabri in the area unless someone else comes off it. Because I am JC+ we get MRi-ed every 3 months, the public centre I am thinking off has left patients go 18 months.

Two years ago, my left leg gave out and I though I was relapsing. Because of VHI I could go to where my neuro is based, she organised an MRI in 2 days which showed a pinched nerve, straight into hospital, epidural in 24 hours. For me it is essential.

Sunny Dayz

We don't have health insurance and we are happy enough with the public health service he has received so far. Although we haven't had much dealing so far thank God. He was treated for mylitos 5 years ago and then for suspected MS at the end of last year.

I would imagine if we went for health insurance now he wouldn't be covered for MS as its pre existing.

Closov

Sunny Dayz wrote: »

I would imagine if we went for health insurance now he wouldn't be covered for MS as its pre existing.

I don't see why not, MS doesn't cause or prevent other illnesses.

The need for healthcare does seem dependent on location then, byhookorbycrook, and I totally get the value of comfort or peace of mind - you can't put a price on that.

At the same time, I wouldn't like people to think they might need it if they don't. I know my neurologist doesn't have it himself!

Salmotrutta

Sunny Dayz wrote: »

We don't have health insurance and we are happy enough with the public health service he has received so far. Although we haven't had much dealing so far thank God. He was treated for mylitos 5 years ago and then for suspected MS at the end of last year.

I would imagine if we went for health insurance now he wouldn't be covered for MS as its pre existing.

It's pre-existing, so he would not be covered for MS-related costs for the first 5 years or so, depending on his age, but after that he would have full cover. You never know what else might crop up that you/he might need help with. It's a decision that only you can make, but I wouldn't be without it myself.

byhookorbycrook

Closov wrote: »

I don't see why not, MS doesn't cause or prevent other illnesses.

The need for healthcare does seem dependent on location then, byhookorbycrook, and I totally get the value of comfort or peace of mind - you can't put a price on that.

At the same time, I wouldn't like people to think they might need it if they don't. I know my neurologist doesn't have it himself!

He'd probably be on better pay than me and might be able to call in help too

byhookorbycrook

And re location, I know a girl from Co. Laois, where Tysabri isn't given. She was attending a neuro in Dublin, but the hospital said ,as she wasn't in their catchment area, she wouldn't qualify for Tysabri as a public patient!!

Closov

byhookorbycrook wrote: »

He'd probably be on better pay than me and might be able to call in help too

Yeah, you know he'll get treated like a prince!

Although having said that, I know a few people who work in A&E, and they're very professional in there, nobody gets ahead of the queue unless they need to.

*edit: come to think of it, he's excluding himself from certain hospitals doing that too

Blinder

I got health insurance in January It won't cover my MS for 5 years, but it will cover it from then. Since nobody knows how their MS will progress, I figure it's worth paying it for the 5 year without getting benefit for the MS for it. I will still get benefit for any other illness that might happen that are not pre-existing.

pbarr

Fingers crossed that this drug will be available soon.

"French firm announces multiple sclerosis drug breakthrough"