MS in all its glory

byhookorbycrook · 26-02-2015 3:26pm

Bugger, yes, allergies can hit at any stage. At least your wait won't be too long and the drugs tend to stay in our systems for about 3 months. (Hence the need for a 3 month "wash out" before stating many new treatments. Have you considered, if you cannot stay on Copaxone what your next port of call might be?

embee · 26-02-2015 9:31pm

byhookorbycrook wrote: »

Bugger, yes, allergies can hit at any stage. At least your wait won't be too long and the drugs tend to stay in our systems for about 3 months. (Hence the need for a 3 month "wash out" before stating many new treatments. Have you considered, if you cannot stay on Copaxone what your next port of call might be?

I hadn't even thought about what the next step was because up until last night I was tolerating copaxone and thought I'd be on that for the foreseeable but it doesn't look like it now. What would they try? She mentioned a tablet that might suit me but that I could discuss it with the neurologist on the 11th.

byhookorbycrook · 26-02-2015 9:34pm

Gilenya, I'd say?

Blinder · 26-02-2015 10:47pm

How are you feeling today Embee? Has the reaction passed?
Did you get to start the new job this week?

embee · 26-02-2015 10:58pm

Reaction passed, still don't feel fully right this evening. Was at my new job yesterday and today but it's a struggle, legs are weak and wobbly.That reaction was horrendous, so scary, thought I was gonna pass out and felt super panicky and then the cooks vomiting...... Feel like I've been through a mangle today! Is the Gilenya any good? It would be nice to not be injectng but am worried it won't be as effective as an injectable. Sorry, I am so clueless about all of this, am not even a year diagnosed so I still have so much to learn about my condition.

Blinder · 26-02-2015 11:14pm

I have a doc comparing the different meds and their effectiveness but I can't find where I sourced it from, so not sure if it's a good idea quoting from it when I can't back it up but ....

Allegedly

.... From what I have been reading, seems that the Gilenya is good. Its reported to reduce relapses by 50%.
Tecfidera is another oral, was just approved here recently http://www.ms-society.ie/blog-articles/1789-new-treatments-for-relapsing-remitting-ms. Also reported to reduce relapses by 50%

byhookorbycrook · 04-03-2015 11:26pm

How is everyone doing? Anyone thinking of Camath/Lemtrada?

Blinder · 05-03-2015 5:06pm

byhookorbycrook wrote: »

Anyone thinking of Camath/Lemtrada?

Is that available on the public health service here? Found a few links to say it's approved here but nothing more.

Not sleeping well. Waking up too many times during the night, which leads to awful days at work when I don't even have the energy to think.

Think it might be the side effects of the ibuphofen that I'm taking to counteract the side effects of the Rebif!
Next week going to start injecting the Rebif in the morning and hoping that it leads to better nights sleep!

byhookorbycrook · 05-03-2015 6:11pm

One of the Dublin hospitals is starting it, I think. I found paracetamol was best for flu side effects. Fatigue is a big issue for MS-ers,not sleeping on tap of that is cat.

kilco · 08-03-2015 10:59pm

Has anyone on rebif developed anything like spots on cheeks a bit like Rosacea after rebif, it's only now after being on it for nearly a year I'm putting 2 and 2 together and wondering if it could be that as I never suffered with sports on my cheeks before that only ever had spots on my chin?

eimsRV · 09-03-2015 11:02am

Hi kilco,

I'm not on rebif but I've similar markings on my cheeks for the last few months and I can't get rid of it.

kilco · 09-03-2015 3:28pm

eimsRV wrote: »

Hi kilco,

I'm not on rebif but I've similar markings on my cheeks for the last few months and I can't get rid of it.

Ya I've tried changing moisturisers, make up ,exfoliating and they won't go and I have never had sensitive skin, I'm trying to get through to the support line today to see what they say

ash23 · 10-03-2015 5:49am

https://beta.mssociety.ca/research-news/article/case-of-pml-reported-in-patient-treated-with-gilenya

New pml case reported for gilenya From feb 2015. Person is doing well. Had only been on interferons prior to gilenya.

irishrver · 10-03-2015 9:00pm

I am due to start Gilenya on Thursday or Thursday week I have been on Rebif since the start of December 2013 but it has not worked for me I have had flare up/relapse for the last 3 or 4 months so after 3 days of steroids I am getting ready to start, but after reading that link I am unsure, should I try something else ?

ash23 · 10-03-2015 11:22pm

That's something you and your neurologist should decide. I'm on gilenya and I'm going to stay on it but I think I'm going to ask for annual JC virus tests. I had one just over a year ago and was negative but I'd prefer they keep an eye on it until there's more information about this new pml case

byhookorbycrook · 10-03-2015 11:57pm

Interesting re Gillenya without Tysabri use. We are JC tested (Tysabri) every 6 months. I have hovered around positive/negative at 0.4 for a while but last time out shot up to 0.8.
PML shows earliest in MRIs, so we lepers err JC+ people in our centre get MRIs 6th monthly. I'd be more inclined to look for MRI above JC test I think.

It also shows as a personality change, so we are lucky in that we have the same nurses and of course our neuro at each Tysabri.
I have explained to the people at work about what they need to look for , so am reliably assured that if I take to keeping my mouth shut or do a proper tidy up in room that they will be on the hotline to my neuro asap:D:D:D

embee · 12-03-2015 12:05am

Went to neurologist today again, it has been agreed that copaxone is permanently off the agenda for me as I had a definite anaphylactic reaction. So now I've been told with Gilenya or Tecfidera, and I've to choose.
I am thinking more towards Tecfidera as I don't want to have recurrent infections, I'd miss loads of work. Have to have repeat MRI asap as the consultant thinks there may be new spinal lesions. I only just had steroids in February so can't have them again so am concerned that I'm gonna have to just put up with these motor and sensory symptoms for the foreseeable. Frustration galore

Zil2011 · 12-03-2015 3:14pm

Hi all, I had what the neurologist refers to as a 'isolated episode under the umbrella of MS' a few years ago - basically I had no feeling down one side of my body, underwent tests, and had a few lesions, etc. Have to go up and down once a year for mri and to see neurologist which is great as I feel reassured.
The past couple of weeks I have been getting a funny sensation on my hands and arms. The skin is really sensitive to touch (even if my clothes brush against me) It's kind of like if you had burned yourself and someone puts their hand on top of the site? I am not great at explaining things, so I hope someone can understand what I am on about!! Basically, I was wondering if you guys think this is MS related or could be something else?

ash23 · 12-03-2015 3:29pm

Zil2011 wrote: »

Hi all, I had what the neurologist refers to as a 'isolated episode under the umbrella of MS' a few years ago - basically I had no feeling down one side of my body, underwent tests, and had a few lesions, etc. Have to go up and down once a year for mri and to see neurologist which is great as I feel reassured.
The past couple of weeks I have been getting a funny sensation on my hands and arms. The skin is really sensitive to touch (even if my clothes brush against me) It's kind of like if you had burned yourself and someone puts their hand on top of the site? I am not great at explaining things, so I hope someone can understand what I am on about!! Basically, I was wondering if you guys think this is MS related or could be something else?

I get this on and off. Feels like I've a bad sunburn and it's always the same small section of skin on my arm and it comes and goes. I assume it's an MS thing but that's not to say it wouldn't be caused by something else in someone else iykwim?
As in for me it's caused by MS. But that's not to say it's an exclusive MS symptom.

Zil2011 · 12-03-2015 6:07pm

ash23 wrote: »

I get this on and off. Feels like I've a bad sunburn and it's always the same small section of skin on my arm and it comes and goes. I assume it's an MS thing but that's not to say it wouldn't be caused by something else in someone else iykwim?
As in for me it's caused by MS. But that's not to say it's an exclusive MS symptom.

Thanks ash23! I might go to my gp anyway but its good to know someone else feels the same!

fungie · 12-03-2015 7:51pm

Zil2011 wrote: »

Hi all, I had what the neurologist refers to as a 'isolated episode under the umbrella of MS' a few years ago - basically I had no feeling down one side of my body, underwent tests, and had a few lesions, etc. Have to go up and down once a year for mri and to see neurologist which is great as I feel reassured.
The past couple of weeks I have been getting a funny sensation on my hands and arms. The skin is really sensitive to touch (even if my clothes brush against me) It's kind of like if you had burned yourself and someone puts their hand on top of the site? I am not great at explaining things, so I hope someone can understand what I am on about!! Basically, I was wondering if you guys think this is MS related or could be something else?

Same thing happened nearly 2 years ago to me, described as a isolated incident. If its a persistent problem no harm getting it checked out either by GP of neuro.

embee · 25-03-2015 1:10am

I am starting on Tecfidera at the weekend, are any of ye on it? How do you find it?

coughdrops · 25-03-2015 12:18pm

Morning all
I have begun to feel a bit off, more tired than I have been, achey, symptomy etc. I was just wondering if anyone ever gets like this in a run up to a relapse? For instance, last year I had a couple of months of feeling unwell, but didn't really do much about it, I just slept a bit more and rested up really. I ended up in hospital with a relapse, which manifested as ON. I am a bit concerned that this is happening again - not the actual ON or a relapse yet, but that I am going to feel more and more unwell until one does happen... if that makes sense. I always seem to get worse as the weather gets brighter/warmer, have an awful time during May, and then recover as the summer progresses. Last year was the first time I ended up hospitalised, but other years I've managed to take a week off work and recover at home.

Has anyone ever taken time off work in "advance" of a relapse... wondering if I took time now and rested up would it stop it in its tracks?

byhookorbycrook · 25-03-2015 8:16pm

Bugger, any chance you are breeding a flu or something?
Re BG12 (Tecdiferda) it seems there was a PML case with that too:
http://www.overcomingmultiplesclerosis.org/Recovery-Program/Drug-Therapies/BG-12-Dimethyl-Fumarate/

coughdrops · 25-03-2015 8:22pm

True enough, I could be. I don't feel like it's a flu/cold (yet), but I tend to think everything is MS related until it's obviously something else.

Ah hopefully this will pass in a few days. Just have an undercurrent of dread that it's starting all over again, and it's probably making me a bit irrational!

byhookorbycrook · 26-03-2015 8:10pm

Do you take Vit D?

Closov · 26-03-2015 9:44pm

Apparently I can't post link cos I'm a "new user", please google the bolded terms for the links I tried add.

embee wrote: »

I am starting on Tecfidera at the weekend, are any of ye on it? How do you find it?

Grand for me, flushing about once a month for 1 to 3 days. Flushing lasts anywhere from 10 to 30 minutes and it always comes exactly 3 hours after taking the pill. For other people its 4 or 5 hours. If I've ever had flushing after taking the night pill, I've never noticed, as it hasn't woken me up. I always take it on a decent bit of food, people say something high in fat helps, so I usually have something like fruit / granola in yoghurt. No digestive side effects for me.

The flushing was much more intense during the first month, and the first few days of the 120s and the same with the 240s, it could feel (and look) like a bad sunburn and last for a good hour. People will give you some very worried looks, if you get it!

byhookorbycrook wrote: »

Re BG12 (Tecdiferda) it seems there was a PML case with that too:
(url removed)

I don't think you posted the right link?
reuters Biogen's Tecfidera sales miss estimates; confirms first PML case
This person "had severe, prolonged lymphopenia for 3.5+ years while on therapy".

Very good discussion of the case here:
Wheelchair Kamikaze Patient Taking Tecfidera Develops PML

fungie · 26-03-2015 10:28pm

byhookorbycrook wrote: »

Do you take Vit D?

Sure do.

coughdrops · 27-03-2015 9:30am

byhookorbycrook wrote: »

Do you take Vit D?

I do, have shares in it at this stage

Feeling a bit better today, I have had a few good nights sleep. Think I was being a bit dramatic!

byhookorbycrook · 27-03-2015 8:54pm

It's easy to overthink things and presume everything is MS related.

amallen · 31-03-2015 5:28am

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 · 01-04-2015 2:01pm

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

JohnMearsheimer · 01-04-2015 4:17pm

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 · 01-04-2015 6:55pm

I get certs so that covers me.

Blinder · 06-04-2015 4:44pm

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 · 06-04-2015 5:36pm

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 · 06-04-2015 7:16pm

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 · 07-04-2015 8:43am

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 · 07-04-2015 7:56pm

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 · 08-04-2015 8:46am

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 · 08-04-2015 11:22pm

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 · 09-04-2015 5:39pm

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

MS Ireland had this info during the week

byhookorbycrook · 09-04-2015 11:48pm

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 · 10-04-2015 9:14am

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 · 10-04-2015 10:12pm

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 · 10-04-2015 11:24pm

and when I gotta go, I gotta go NOW.

Meet your sister

tippgod · 17-04-2015 9:00pm

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 · 17-04-2015 11:13pm

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 · 24-04-2015 10:18am

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

Closov · 24-04-2015 10:40am

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?

MS in all its glory

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