Tag Archives: avonex

Name change

13 Apr

Not sure if I like it but for now it is all I could think of.

I took my usual Monday afternoon Avonex injection and I feel like crap right now.  Some weeks are better than others but today isn’t a good one.  I have a love hate relationship with my drug of choice, I am so lucky to have any drug that is fighting it however little % effectiveness but I hate the way it makes me feel and the pre-injection anxiety.

Something that I need to get off my chest is the current theme among MS patients is this, if your MS doesn’t have progressive in the title, then you aren’t progressive.  I am very aware that MS can be more progressive in some people but I do take umbrage at the suggestion that relapse remitting is some sort of golden ticket in the MS world – it isn’t.  We all progress, if were weren’t, then why take disease modifying treatments?  Are they not taken to help slow progression?  Did someone miss that bit of information?  Why are the MS organisations not doing more to correct this?  This is playing right into DWPs hands (following on from yesterday).  During my assessment, she said oh you have RR like that means fine.  We have treatments therefore we are fine, right?  No, wrong.

I really don’t know from a general society point of view that the types of MS are helping us at all.  In a lot of ways I wished the types were behind closed doors for the medical professionals.


Apologies and general ramblings

9 May

I would like to apologise for my inconsistent postings.  There is no excuse, I have simply struggled with different aspects of my life and it has had a knock on effect with this, sorry 😦

Well today marks the third week of injecting.  Last week I injected in the afternoon half an hour before I would have picked my son up from school (he was on half term, so ideal time to try).  Things seemed to be okay, I was trying to avoid him being up when the shakes etc. kicked in.  The first week, I had to inject in the morning, it was just the timing of the Nurse coming out.  Unfortunately by the time I got home with my son I was in full grasp of the side effects and I didn’t want to repeat that.  I was very pleased that the intensity didn’t happen, so I am hopeful this week will be the same 🙂

The pen is very easy, I do feel apprehensive just before I press the button but I’m sure that is pretty uniform for everyone, I mean who likes injecting themselves?

I had a pretty scary moment yesterday, my legs felt the heaviest they had ever been.  I walked my son to school quite slowly.  I walked home very slowly and I felt like my walking was weird, awkward.  I was very aware of people behind me and that I was holding them up but I thought they can cope as they wouldn’t want to swap eh!  I made it home (very short journey) got indoors and then turned into Wallace in the Wrong Trousers.  Each step reminded me of that episode and I was giggling at the same time as being very frightened.  I have a feeling that will become a pattern with these symptoms!  They recovered after a while but it was an unwelcome preview into the future.

I have started Physio and boy did she work me!  She was helpful and said that we have to start very slowly.  I have to go once a week to the Hospital Gym and do 2 minutes on various machines, march on a square of sponge and walk on a running machine for a few minutes.  She makes me go faster on that one as I have long legs, first time I’ve been punished for that!  I found out the worst thing to say to a Physio is help me help myself.  I do want to help myself, stay as active as possible, I am responsible for my own quality of life.  Trouble is, my body is screaming at me to sit the hell down, have tea or coffee and do nothing.  I have a daily conflict with this but I figure that there will be plenty of time to sit when the ol wheelchair days loom close so for now I will use my legs as and when I can and that window is getting less and less.

As a newly diagnosed person, I have to admit to hating the saying, I have MS but it doesn’t have me.  Erm, yes it does have me but what it doesn’t have is my attitude towards it.

Medication Eve

24 Apr

Well, here I am the night before reinforcements arrive.  Mug of tea, two slices of walnut cake and then at 10pm, Greys Anatomy.  I love that show and I mean love it!!

I really want to start these drugs, I mean they help to extend your life, basically help to reduce damage, slow it down a little.  It was a no brainer for me, I know others choose not to and it is a very personal choice.  My fear is the side effects and even that is irrational to a point.  Every drug we put in our bodies comes with the potential of unwanted side effects, so why is it so intense with my chosen DMD?  I think one point is that I have been doing a lot of research and whilst that is good it can sometimes lead to too much thinking almost  to the point of talking yourself out of something.  Secondly, the side effects to be fair are pretty tough going, alterations to your blood levels, i.e. infection fighting, altered liver counts, seizures, heart problems, thyroid issues (already have), etc.  Then there is the flu type symptoms.  I have had flu once in my life and I thought it was horrid; I wouldn’t be bothered really apart from my Saturday job.  It is physical work and I just don’t want to go in this weekend feeling like I have the flu.  Problem is no one can guarantee whether it will happen to me, everyone is different.

It is clear that I am not a go with the flow type of person, no matter how much I thought I was or wanted to be.  I like to know what will happen and when; and there is the problem!!  Nothing about this disease fits in with that, oh dear, this is going to be a tough rough year and this I have accepted.

I have been trying to carry on as normal, it is almost as if nothing has happened.  For the last 2 weeks my husband and son between them have run me ragged, not on purpose but through sickness.  I have literally been up to my eyes in sick and diarrhoea, not nice at all.  My hands are red raw through handwashing that would make most peoples eyebrows raise as getting an infection like that would set me back weeks. The last time I had sickness it took me 2 full weeks to start to recover and my freckles almost disappeared and believe me that takes some doing.  It was after that episode I really really pushed for medical help, several years later here I am.

So, Avonex, my new best friend that I am ever so slightly afraid of, my body looks forward to working with you, we have some slowing down to do……

Help is coming (but has sent me crashing)

5 Mar

I have been having a lot of trouble deciding which DMD to start and I mean A LOT of trouble.  Decision making has never been a strong point of mine but this is a nightmare.  Its a no brainer as to whether to start them but which one??  They all sound horrendous, chinese hamster ovary, human serum of some sort and then the other which causes big pot holes in your skin which are permanent!!  Not much of a choice but at least I have a choice, I am very grateful for that.  Superman cape still intact on Neuro!!

This morning I got a call from my MS Nurse.  I was relieved to finally speak with her and she said she can help with my decision, great!!  yay!!  So why then, when I came off the phone did I feel like crying myself into oblivion?

It really hit home when I spoke to her that I am really ill.  You would think that the diagnosis from Neuro would have been it, no not me, it was the friendly nice nurse who upset me.  She sounds like the shoot from the hip kind of woman and that is my kind of woman.  I need people like that always have done.  I like to know where I am and I cannot stand wishy washy people who are too scared or polite to tell it like it is.  No time for that with MS, I need honest facts so I can deal with it.

I cannot believe since looking at the DMDs how blumin vain I have become.  I was sure Copaxone was the one for me but I just have not been able to get over the lipoatrophy.  This causes the fat cells to be destroyed leaving big dents in your skin (injection sites).  Why can’t I get over this??  So, I think I’ve narrowed it down to between Avonex and Rebif.  Now with this, I am petrified of the liver problems.  What I need to ask the Nurse is, if the liver levels become abnormal, if the drug is stopped does the liver return to normal or is the damage permanent.  If the liver can repair itself once off the drug then I think it will be Avonex.  I will be nervous but I can handle the injections, I have given plenty to animals and although it will be different as its me, I am not nervous or wobbly around needles, so I am hoping it will help me.

Trouble with Copaxone is the skin problems are permanent and the way I see it right now, I am not ready to ‘see’ how ill I am.  It would be a constant reminder of what is going on on the inside.  I don’t want to look damaged on the outside just yet.  I am just not ready.

I say all this and then something will come along and make me wobble about them.  I have been on MSDecisions website numerous times and everytime the results come up:

Avonex, Copaxone, Rebif.

Which one?  Any thoughts, experiences most welcome.  I would be very grateful.