MS in all its glory

ash23

outnumbered82 wrote: »

Hope everyone is enjoying the nice weather. Does anyone notice that there injection sites are more sensitive to the sun? Was sunbathing over weekend had factor 20 on and noticed red circles on the top of my leg not burn but just red circles then remembered that was where I injected. Does anyone else get that?

Yes, I do. I'm on Copaxone and often have a lump under the skin or a red mark for up to 24 hours after injecting. I've never noticed a connection with the sunshine but I usually inject on my stomach or thighs which never see the light of day lol.

kkelly77

Does anyone know how long the processing times are for disability claims and if/how arrears are calculated?

ash23

kkelly77 wrote: »

Does anyone know how long the processing times are for disability claims and if/how arrears are calculated?

I sent mine in back in Jan and heard nothing, not even an acknowledgement that they got it :mad:

I think the processing time is about 50 weeks. Not sure about arrears.

kkelly77

Has anyone been affected by facial palsy?

I got hit with it last Friday but no way to determine if it's related to MS. Getting a 3 day course of steroids to try and sort it out. I don't take blinking for granted anymore

Leogirl

KKelly,

I had this just before I was diagnosed & was given a 7 day course of oral steriods - it cleared up completely. I was told afterwards that it was MS related.

Hope it clears up soon - its a bit of a pain, mine was my lower face so lots of messy eating & crooked smiling!

Just mind yourself - I kept going as usual & ended up having a full blown attack so I think it might be a little warning?

Take care.

kkelly77

Found this article while doing some internetting

New multiple sclerosis drug shows promise

discobeaker

kKelly77 - Just seen this on the MS Ireland website. Its some powerpoint slides from the talk in the Davenport Hotel from last month. Hopefully that will give you some info

http://www.ms-society.ie/blog-articles/1353-young-people-with-ms

kkelly77

discobeaker wrote: »

kKelly77 - Just seen this on the MS Ireland website. Its some powerpoint slides from the talk in the Davenport Hotel from last month. Hopefully that will give you some info

http://www.ms-society.ie/blog-articles/1353-young-people-with-ms

Thanks for the link discobeaker.

Shame that Noeline Blackwell's presentation isn't included too but at least the rest of them are available.

kkelly77

I'm considering starting on Copaxone as medication of choice. The fact there are fewer side effects, such as flu symptoms and mood changes compared to the other interferon based products, are a big plus.

However, I have read the cons are the fact injection is a daily occurrence and a possibility of injection site issues such as lipodystrophy (fat cells and other dermo layers can be degenerated at injection site permanently).

Can anyone everyone throw in their 2 cents on this? Thanks.

P.S. Rebif would be my second choice due to their delivery system; small needle, gadget with lots of features etc.

discobeaker

I'm on Copaxone since the end of January. At first it was abit of a struggle to get used to injecting every day but now its second nature. I inject in the morning when im in bed then roll over and have another snooze so i dont feel the sting from the injection.

There are over 60 different sites on your body to inject so i dont think you have to worry too much about it messing up your skin. Only place i find is a bit of a pain is sometimes my legs as ive hit the muscle afew times and its kinda painful but apart from that i have had no bad experiences with Copaxone

kkelly77

discobeaker wrote: »

I'm on Copaxone since the end of January. At first it was abit of a struggle to get used to injecting every day but now its second nature. I inject in the morning when im in bed then roll over and have another snooze so i dont feel the sting from the injection.

There are over 60 different sites on your body to inject so i dont think you have to worry too much about it messing up your skin. Only place i find is a bit of a pain is sometimes my legs as ive hit the muscle afew times and its kinda painful but apart from that i have had no bad experiences with Copaxone

That's good to know about the injection sites. It was stressed to me about the importance of rotating sites.

Can you tell me, does the Copaxone delivery system inject, administer and retract the needle or does it just inject and administer?

discobeaker

The auto injector just sticks the needle in and pushes the copaxone out but it only goes in 7mm so its not to far then you just pull the needle out after a 10 second countdown (to make sure all the copaxone is out) but you hardly feel it. About 30 seconds later you get the stinging sensation around the injection site and it goes alittle red but then it goes away after 10 mins or so

kkelly77

discobeaker wrote: »

The auto injector just sticks the needle in and pushes the copaxone out but it only goes in 7mm so its not to far then you just pull the needle out after a 10 second countdown (to make sure all the copaxone is out) but you hardly feel it. About 30 seconds later you get the stinging sensation around the injection site and it goes alittle red but then it goes away after 10 mins or so

Good stuff discobeaker. Thanks again for the info.

I will be discussing all of this (and more) with the treatment nurse on Monday before I make a final decision.

kkelly77

I've attached an injection site tracking sheet I found on a different forum - thisisms.com

discobeaker

If you go for copaxone you get a booklet from the makers Teva that shows you the injection site. Just double checked mine and there are 62 injection sites. My copaxone nurse told me not to inject into my arms (apparently it gives you the odd dead arm) but instead of my arms i have to inject into my hips.

byhookorbycrook

I think Tysabri is going to be used more as an early treatment ,worth considering. On it since Jan 2009 and relapse free since then.

kkelly77

byhookorbycrook wrote: »

I think Tysabri is going to be used more as an early treatment ,worth considering. On it since Jan 2009 and relapse free since then.

Oh no, more research :pac:

I assume Tysbri is interferon based, with the usual potential for interferon based side effects? The treatment nurse never mentioned it to me.

val444

Hi,

I was on Copaxone for over a year and didn't find it too bad. I haven't injected in six months though and I still have lots of indentations from the injections. It is lipatrophy but to be honest, it just kinda looks like bad cellulite.

Copaxone didn't do the job for me so I plan to try Tysabri next. Taking a wee break for babu making purposes right now though!

Hope this helps!

ash23

I'm on Copaxone since December 2012 and injecting is second nature now. I don't find the skin reactions too bad. I also don't use the auto inject thing. I prefer to just inject myself.

I have had a relapse while on it, a case on optic neuritis. It hasn't been as severe as the last time though so if the Copaxone is responsible for that then I'm grateful. Last time I lost almost all sight in one eye for months. This time it's just a bit blurred.

Knocknarea

I have just finished my first month on copaxone and fingers crossed going well, I take it first thing in the morning so it just becomes part of the daily routine. It does sting for about 30 mins after but I am finding it a lot easier than the betaferon for site reactions, still have lumps and marks from using it so a huge improvement! Finding the copaxone nurse very good and has had really good advice on living with MS outside of just taking the drug! So all and all fingers crossed, have full set of MRIs lined up for a couple of weeks time so will have a good idea here everything is at !

kkelly77

Knocknarea wrote: »

I have just finished my first month on copaxone and fingers crossed going well, I take it first thing in the morning so it just becomes part of the daily routine. It does sting for about 30 mins after but I am finding it a lot easier than the betaferon for site reactions, still have lumps and marks from using it so a huge improvement! Finding the copaxone nurse very good and has had really good advice on living with MS outside of just taking the drug! So all and all fingers crossed, have full set of MRIs lined up for a couple of weeks time so will have a good idea here everything is at !

Thanks for the advice Knocknarea.

Good that you brought up the issue of nursing care support relating to a person's choice of medication. That support is quite important and does tend to get overlooked I suppose.

It would be interesting to hear peoples experiences with the support they've received from the nursing staff of their chosen medication.

ash23

My nurse is great. she calls me regularly enough to make sure I'm ok. I don't tend to try and meet up with her because I don't need anything so I don't see her very often but that's my choice, it's not because she's too busy.

I just got my appointment for physio. 4 months waiting so it's not too bad. Only problem is that I think it clashes with my neuro appointment but I have to check my diary tomorrow in work. Would be typical though if it did

byhookorbycrook

kkelly77 wrote: »

Oh no, more research :pac:

I assume Tysbri is interferon based, with the usual potential for interferon based side effects? The treatment nurse never mentioned it to me.

No, it's not an interferon and the risk of PML is the reason people are wary of it.
http://www.ms-society.ie/uploads/File/Living%20with%20MS/Our%20publications/Tysabri.pdf

Personally, the benefits outweigh the risks as it is the most effective treatment by far currently available.

outnumbered82

How's everyone finding the hot weather. I've had a few symptoms flare up but not to bad

Knocknarea

Feel like my myelin is melting! Some visual problems in the eye that's affected by optic neutritis and lots of tingles and niggles in my feet and arms. But it is good to see the sun that I'm loathe to complain, drinking loads of water, defo not sunbathing, and cat napping but lots of non MSers doing the same.

barrackali

The hot weather put me in hospital for 4 days....I never thought I'd say this, I think I need to find a colder country to live in.

And to add to the bad news, my neurologist in Beaumont wants me to get my neurologist in St Vincents to see me ASAP...she said the latest MRI shows more progression.

Ah, feck it anyway

ElleEm

barrackali wrote: »

The hot weather put me in hospital for 4 days....I never thought I'd say this, I think I need to find a colder country to live in.

And to add to the bad news, my neurologist in Beaumont wants me to get my neurologist in St Vincents to see me ASAP...she said the latest MRI shows more progression.

Ah, feck it anyway

Wow, you poor thing. What's the story with Hardiman sending you to St. Vincent's? I thought she was the best (other people's admissions, not mine!). I am with her.

I am usually (pre MS) a sun worshipper but am pretty much avoiding outside til the early evening time. I nearly fell the other day with the footdrop...my own fault as I wasn't wearing my splint. The splint I wear has to be worn with runners and I prefer jeans with it as it is covered. Far too hot for jeans when I am out and about! I am really weak on my right hand side, and although I am tired, I can't sleep cos of the heat It's great to see everyone around me being happy with the weather but I am secretly hoping that the temperature drops soon!

barrackali

My Doc in Beaumont is Dr. Moroney & ,my doc in Vincents is Niall Tubridy (yeah his brother). Dr Moroney is a superb doctor and a great person, she tried the whole range of meds on me, she just felt that another set of eyes might be needed in my case.

Niall Tubridy is a specialist in MS, he also has a good team around him...so it's ok. I still do all my in patient stuff in Beaumont, so I'm not too bothered by having to travel for the other stuff.

ElleEm

barrackali wrote: »

My Doc in Beaumont is Dr. Moroney & ,my doc in Vincents is Niall Tubridy (yeah his brother). Dr Moroney is a superb doctor and a great person, she tried the whole range of meds on me, she just felt that another set of eyes might be needed in my case.

Niall Tubridy is a specialist in MS, he also has a good team around him...so it's ok. I still do all my in patient stuff in Beaumont, so I'm not too bothered by having to travel for the other stuff.

Heard good things about Dr Tubridy! And hopefully you won't have to travel that often x

ash23

The first day in work in the heat I had to go home early because I thought I would keel over. I invested in a tower fan for my desk and have been fine all week. Heat isn't affecting me too much although my vision plays up a bit.