Jump to content
The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.
anna derbyshire

avonex - just started

121 posts in this topic Last Reply

Recommended Posts

anna derbyshire

Hi all

 

just wanted to share my experience so far, and hope that other people get back to me and share THEIR experiences too!

 

I started avonex yesterday....i went to my local hospital with my pre filled syringe and had a "training session" with my MS nurse, my partner, my mum and my 2 year old daughter! he heh!

it was so simple, the blood test that she did a few minutes before hurt more than the avonex!! :hearts_circle:

I had no side effects at all, apart from an achy arm at about midnight, but it wasnt painful or anything!

Might be a wee bit different next week when i have to do it myself, but if worse comes to worse, i will get my other half to do it! :hearts_circle:

 

soooooo, we shall see how it goes!

I will update next Friday!

 

and for all those who are terrified about starting avonex or any other DMD, this is quite natural - i was a mess!

But, it really aint that bad AT ALL!

 

Anna x


Anna x

Share this post


Link to post
Lindyloo

:hearts_circle:Well done Anna!!

 

I reckon the 1st one is the worst - next time will be much easier...

 

big hugs

 


LindyLoo xx

" This moment will pass " (Bono U2)

Share this post


Link to post
elma
Hi all

 

just wanted to share my experience so far, and hope that other people get back to me and share THEIR experiences too!

 

I started avonex yesterday....i went to my local hospital with my pre filled syringe and had a "training session" with my MS nurse, my partner, my mum and my 2 year old daughter! he heh!

it was so simple, the blood test that she did a few minutes before hurt more than the avonex!! :hearts_circle:

I had no side effects at all, apart from an achy arm at about midnight, but it wasnt painful or anything!

Might be a wee bit different next week when i have to do it myself, but if worse comes to worse, i will get my other half to do it! :hearts_circle:

 

soooooo, we shall see how it goes!

I will update next Friday!

 

and for all those who are terrified about starting avonex or any other DMD, this is quite natural - i was a mess!

But, it really aint that bad AT ALL!

 

Anna x

our Anna,

 

Hi Anna,

 

I have been reading your posts and just wanted to say Hi

 

Lots of the things you said reminded of me of my experience 2 years ago when I was housebound because I could not walk at

all and like you went on sick pay and then of course after 6 months went to half. It was a terrible time as I did not have a

diagnosis for my illness. Finaly last year i got an MS diagnosis which was good in a way, cos I at last knew what was wrong.

Apparently have had it for 20 years, tho was unaware. At least now I have a reason for always falling over-even without a

drink.

 

I was off work for 6 months and found it very frustrating. I was ill a lot of the time due to drugs I was taking for swelling.

My answer to the boredom was jigsaws and my answer to the money loss was to take a bank loan-not a good idea as I am

struggling with the payments now.

 

On a positive note, I went back to work in Nov. 2007 and haven't been off ill since, though some days are a big struggle.

My employers are being really good now that I have a diagnosis and also because of the new disability law to support you in a job.

Unfortunately my job as a support worker is not so good for someone with MS I sometimes feel I need a support worker myself!!

 

Gapapentin has helped me enormously-the pains in my legs were unbearable. Took a while for me to get used to them tho.

Not on any other drugs so far but exhaustion is my main problem now.

 

Good luck with the anovex,

 

Elma.

Share this post


Link to post
Michelle

Well done Anna. And thanks for your input Elma :hearts_circle:

 

Michelle

Share this post


Link to post
Hezza

Well done Anna. I take Rebif and it's such a part of my routine now that it just seems "normal" :hearts_circle:

Hope next week's jab goes as well for you :hearts_circle:


Life is short. Eat dessert first. Jacques Torres

Share this post


Link to post
anna derbyshire

:hearts_circle: thanks all for your supportive messages...means alot to me, cos it is scary the whole commitment to a drug that might not even work for me!!! BUT, i have a positive attitude towards the whole thing, and believe it will work wonders for me! (fingers crossed tho!)

 

Hello Elma

good to "meet" you

your experiences really mirror mine, was quite spooky to read!

I am sort of a support worker too - i am an outreach worker - visitng different people in their homes - so a fair bit of walking!

i am itching to get back to work...i love my job and have only been there since feb, now im off sick till god knows when :hearts_circle: when resting is all you can do, you wish you could do more, but when you ARE mobile, the fatigue can be crippling! I havent had fatigue at all since i had my daughter (she's 2), but before that, it was quite debilitating, especially if your employers dont understand, or care.

 

well done for no sick days tho!! :kisslips:

 

good to hear from you

 

Anna x


Anna x

Share this post


Link to post
Gaynor

Glad it went well for you Anna, quite daunting at first I guess. I'm still not on any DMD but have had the offer. I may take up the offer in the future though if I have any further significant relapses.

 

Gaynor

Share this post


Link to post
anna derbyshire

Hi Gaynor,

 

I agree with your decision about holding off the DMD's...the only reason I started them was due to lots of relapses all in a row, but i was diagnosed about 5 years ago, and decided not to take DMD's till i felt it was necessary....

 

Take care

Anna x


Anna x

Share this post


Link to post
Oops

Just my usual word of caution from someone who decided to wait and then went full SPMS inside 6 months with no warning - in fact the first I knew was when I had my "usual" winter black spot and steroids dramatically failed to work. The thread I made at the time can be found on here somewhere if you can be bothered to search, it was about 18 months ago, immediately after Xmas, in fact I started IVmP on New Year's Eve! :cheerleader:

 

Cue panic stations and a repeat MRI to try and get me onto Tysabri, which unfortunately (never thought I'd say that!) showed that I had only one new lesion, of the type seen in RRMS and early SPMS, which is what they were looking for - apparently the damage from progressive-type progression as opposed to relapse-induced progression has to be specifically scanned for and they don't bother since it costs the national debt of a small African country and there's nothing you can do about it...Hope that makes sense...This gave me the grand total of two, which is what they expect with SPMS so that was me screwed on the treatment front.

 

I've had various ups and downs since then, and my disease seems to plateau and then leap down a step, leading me to get on the phone in the hope that I might be having a relapse every time it's happened since, all to no avail. I am definately full, non-relapsing SPMS and therefore not eligible to try any DMDS.

 

At the time I refused to try DMDs I was concerned about side effects so decided to leave things be whilst I was still well. What I completely failed to appreciate was that the BEST time to do DMDs is when you are well because a) you are more able to cope with any crap stuff that comes with them, and b) the idea is to keep you that way as long as possible. By hanging out for "Last Chance Saloon" I basically blew my only chance - something that was particularly pertinant in my case as I have since found out that they suspected I was relapsing SPMS by diagnosis anyway, given my medical history, so they never really pushed me to go for it. I thought I'd just bimble along feeling pretty good and then get pumped full of steroids from time to time and that'd be that. Stupid, huh? :bravo:

 

PLEASE PLEASE think about this when you turn the opportunity down. I 100% understand the mindset which leads people to that point, as I made precisely that decision myself, but I bitterly regret it now. Ok, so it might be an utter waste of time, it might be hellish, and you might try and decide it's not for you, but to cannibalise a phrase, it's better to have tried and stopped than never to have tried at all and never get chance to try again.

 

We none of us know where this disease might take us, and as my favourite MS Nurse put it to me during one of my more pathetic pleading attempts (bless her, she put up with a lot whilst I was in denial...No wonder she went on a 6 month detachment to work in Motor Neurone...LOL!!!) "It's MS, it can do exactly as it likes"...So don't throw away your chances through what may just turn out to be misplaced optimism, as mine was.

 

I'll bugger off and put away my soapbox now. As you were.... :crazy::wtf::you-rock:


Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

Share this post


Link to post
linds

No Oops don't bugger off! I enjoy your straitforwardness too much. Lindsxxx


Lindsx

 

 

 

Share this post


Link to post
anna derbyshire

Hi oops,

 

that post was an eye opener! i love the way you put your point across, it made me stop and think.

 

Although i wanted, was DETERMINED to wait before going on DMD's, this relapse that i am going through currently (very long, very painful, steroids didnt work), did make me think that i may have missed the opportunity to start DMD's, as I was supposed to go straight to tysabri (do not pass GO!) although nothing was actually vocalised by my consultant, I wondered whether i was "too far gone" to start DMD's.

I then asked my MS nurse if i could try DMD's-avonex- and she wouldnt give me her opinion, just told me she was here to support me with whatever decision i chose...then i spoke to the other MS nurse, who told me she thought i was doing the right thing by trying avonex first, as if it didnt "work" for me, then i could always move on to try Tysabri...that was what i needed, someone telling me what i was doing was the right decision!!!

 

I had a second MRI scan, on the first taken when diagnosed 5 yrs ago i had 3 lesions i think, and on this one it showed 12 or more, but the disease was not active at the time of scanning, which is good apparently. Does anyone have a clue what this means??

surely its bad to have that many more lesions than last time?

but yet i was still eligible for avonex....?

 

well, i dunno! :cheerleader:

 

fingers crossed avonex DOES work for me, and i havent left it too late. Like i say oops, you have really made me think.

 

all the best to you, and i look forwards to going through the archives and finding other posts by you

 

Anna x


Anna x

Share this post


Link to post
toby

hi anna and all the others,

 

I am with Oops on this, I had a lot of different symptons/relapses in my 1st year and wondered "was this how my life would continue"

So as soon as i was offered dmds i jumped at the chance, i think i need to be proactive with things like this!

I fully understood that it may help but with no guarantees and that as long as i gave the drugs a decent time for them to work i could stop them if i decided to.

 

The decisions are yours we can only offer advice.

 

Good luck

 

toby x

Share this post


Link to post
Christina

I found it really interesting and helpful to hear all your replies to this one. I'm going to start Avonex in the next few weeks, so I'm particularly keen to hear how people who have just started on the drug are finding it. I'm also pretty nervous about the first injection and the side effects and having read the drug leaflet that comes with the injection, the side effects listed are pretty scary.

 

Anyway, reading others' thoughts on when or if to start DMDs - I went through the same process of thinking I wouldn't start DMDs until I really needed them especially if my relapses were manageable and I've only been diagnosed for a year, although suffered years of symptoms. Unfortunately I started a relapse in January which went from bad to worse and my neuro persuaded me to try DMDs and not to miss the opportunity. It's only just occurred to me from reading others posts that he was possibly thinking maybe I could progress to progressive MS and if I did then I would have missed the boat. I have three spinal cord lesions and a few brain lesions and am such a newcomer to the MS diagnosis that I find it hard to know how the medics tell the difference especially at the start of the disease which category of MS patients fall into. Can anyone help me out on this? My neuro has said it's relapsing/remitting for me and that diagnosis won't be changed but I want to be sure I'm not being mislead.

 

Oops, I hadn't realised that lesions for RRMS and SPMS may be different on MRIs - is it that or is it more to do with where they occur?

 

Guys, thanks for reading this - there is so much I still don't know about all this.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

Share this post


Link to post
Oops
Oops, I hadn't realised that lesions for RRMS and SPMS may be different on MRIs - is it that or is it more to do with where they occur?

 

Apparently - and I can only pass on how it was explained to me, as I don't fully understand it myself - the damage progression causes doesn't show up on a normal MRI at all, it has to be specially "weighted" if they want to see it, which they don't. It's apparently quite normal to see people with PPMS and not a single visible lesion on MRI, and this is why. It's not inflammation or scarring, see, it's axonal damage - as in the actual nerves have munched bits. Something like that. And there's no inflammation, which is why steroids don't work.

 

Presumably, Anna, that's why they said having lots of lesions was a good thing. As in, you still have inflammation happening, which means you are still relapsing, therefore you can still have DMDs...And if you have loads of the little buggers, you'll probably be allowed Tysabri when the time comes as well. So it's kind of good from a clinical point of view, rather than from a patient's point of view, 'cos they can still do something with you. Only a guess, mind, I'm no expert.

 

Gotta fly back to work (see sig), so hopefully someone else will come along and be able to explain all this slightly better. I only found out the half of it when I went SPMS and started asking questions like "But my Neuro said the MRI show no significant progression, so how come that makes me SPMS?" He meant, of course, active progression of the relapsing bit of the disease... Yeah, clear as mud, isn't it? :cheerleader:


Apologies in advance if I post then vanish for a bit - I work away from home and will be back at the weekend!!!

Share this post


Link to post
Christina

Hi Oops

 

Thanks so much for that explanation. Now it starts to make more sense to me and that is why my neuro can be definite about it being RRMS at the moment. From what you say, it sounds like when it progresses to SPMS there are no more new lesions. When people are diagnosed with PPMS from the start, does that then mean that they have no lesions to see on MRI?

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

Share this post


Link to post
anna derbyshire

sooo....today is the day for my second injection....and the first one that i will actually do myself, as my ms nurse did the first, so i am EVEN MORE nervous about this one!

 

its wierd, but i dont feel like i have taken anything. Now, i know that any effects might take some time, but naively, i thought there would be SOME kind of difference that i would feel with a new drug pumping around my body Even if it was side effects, but NOTHING!!!

i spose some people who have had horrible side effects would say that i should count myself lucky, but i just wanted some kind of sign....

 

anyhoo, maybe there will be a difference today, we shall see later, i will keep you all posted!!!!


Anna x

Share this post


Link to post
toby

Good luck anna,

 

Not that youll need it!

 

I always used to wind myself up on jab day and then after id done it wonder why i was being such wuuss.

Share this post


Link to post
Christina

Good luck Anna

 

I'm sure you can do this fine. I shall be in the same position myself in a few weeks. I've got the Avonex in the fridge but no-one can teach me the injections until 15th July - partly cos I'm away for a bit and also because they have cancelled clinics.

 

You did mention a few side effects after your first injection, so maybe that's all you'll get. I'm sure it's not reflection on how well the drug is working. Sounds good to me!

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

Share this post


Link to post
vix

Toby when I was on my injections I had to wind myself before I could inject but its over with in seconds, I am now on a years break and not looking forward to the first one back!!!!!

 

But well done Anna

 

xxxx


vix.jpg

Share this post


Link to post
Hezza

Well done on the 2nd Jab Anna :crazy2:

 

I hope that if the side effects ever turned up they were mild :hearts_circle:


Life is short. Eat dessert first. Jacques Torres

Share this post


Link to post
anna derbyshire

thanks all,

 

but......i chickened out!!! :hearts_circle:

got it all ready, made sure my 2 year old was otherwise occupied so she wouldnt interrupt (lolly in the back garden!!) sat down with my other half, he made the skin taut, and.....i just couldnt do it!! hehhehhe.....so Mick took over, and i looked and felt like SUCH a chicken! specially when it really didnt hurt in the slightest. gotta do it next week, my reputation is at stake!

 

anyways, no side effects at all again....

 

i had an afternoon (maybe a bit shorter) of no pain yesterday.....this was before the avonex, so its probably not linked, but i walked home from asda, which i have never done before, i have always had to get the bus, even though its only about a 10 min walk....so am v v v chuffed!

next thing you know i will be back at work! god, i hope so....!

 

take care everyone

 

Anna x


Anna x

Share this post


Link to post
Christina

Hay Anna

 

Never mind about chickening out - I am sure I'll be just like you in a few weeks time when I do my first injection. I am glad you're not having any of the side effects either - with a 2 year old around, it wouldn't be good to be laid up with flu-like symptoms.

 

Fingers crossed for your next injection!!

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

Share this post


Link to post
Michelle

Hi Anna,

 

I'm sure I would have chickened out too. Main thing is that you had your first shot. And btw, fab news about being able to walk home from Asda's.

All the best for next weeks shot. I bet you are able to do the next one :hearts_circle:

 

Michelle :kisslips:

Share this post


Link to post
Hezza

Hi Anna,

The main thing is that it's done - it doesn't matter who pressed the button. Well done & good luck for next week :hearts_circle:


Life is short. Eat dessert first. Jacques Torres

Share this post


Link to post
anna derbyshire

awww, thanks everyone for your support :hearts_circle:

 

i think i will be able to do it on friday, and i'll wonder what all the fuss was about!!

 

i just wish i felt like Anna again....although i managed to hoover, tidy up, and cook spag bol!! (akthough i was trying to be healthy and did it with turkey mince and no flavour basically...and it wasnt too good!! :kisslips: heh

 

Anna x


Anna x

Share this post


Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Similar Topics

    • Plegridy v Avonex

      Hello everyone,    I hope you are all keeping well and cool in this heat. I haven't been on here for a while, the last time was around the time I was going to start Brabio in January. Briefly, I was taken off of Tecfidera after having a very low lymphocyte count, prior to that I had been on Avonex for 10 years. It was suggested that I try Brabio, I wasn't keen but agreed. Unfortunately I could not face the really horrendous sounding side-effects - particularly the shortness of breath and increased heart-rate. I was sat at home with the nurse for over an hour trying to gather up courage but just felt unable to have the injection. Now I have been offered Avonex again, or Plegridy as an alternative. I really don't fancy either to be honest, and to me they feel like a backward step. But I have been told that I am 'doing well', a recent MRI showed no new lesions and unbelievably, some old lesions had healed - and that's after taking nothing for 9 months. However I feel I should be taking something, and maybe Avonex or Plegridy might be better than nothing. Have any of you experience of taking Avonex and switching to Plegridy, or even just taking Plegridy? I am frightened of the unknown effects of Plegridy, but feel a fortnightly injection might be a better option than a weekly one. If I can gather my courage, that is!   Thank you very much!   Best wishes, Catherine

      in General Discussion about MS

    • Plegridy v Avonex

      Good afternoon everyone,   I haven't been here for a while, I hope you are all doing okay. I wondered if anyone here has changed from avonex to plegridy - and what their experience has been? I have been on avonex for 10 years but because I am taking methotrexate for rheumatoid arthritis, I can't take any of the oral DMT's. I thought plegridy might be a better option. Any thoughts?   Many thanks, Catherine

      in General Discussion about MS

    • Started a Blog, trial time

      I hope this is an ok place to post a link to my blog   http://brokendancer.over-blog.com/   Sonia x

      in General Discussion about MS

    • About to start Avonex

      Ok so finally after a few more 'episodes' i have been told its time to start dmd. I choose Avonex because the once a week injection was more appealing than daily.   I have not yet received my meds but when i do i have to go for training to inject so i have been doing a lot of research about the drug. The injection itself does not worry me too much and i know after the initial one i will be ok with it but my concerns are what i am reading from other people about side effects. I was told what they were flu like symptoms and how to deal with them but nothing about 'rigor' or the fact that the symptoms were quite so debilitating. I am now getting worried as i care for my grandchildren, i dont have them wednesdays or thursdays so thought to inject myself on a tuesday evening but after reading some of the posts here and other places i worry that the effects will last too long or be too severe for me to continue looking after them.   Has anyone had a good experience on this drug or can you give me any personal tips that helped with the side effects?   Trish x

      in General Discussion about MS

    • Thoughts/experiences of Copaxone & Avonex?

      Hi I hope you are all doing well? I am looking for some advice as usual!   I have been on Rebif 44mcg since August this year. It has been up and down in terms of side effects, some days I have none and others I am bed ridden, other days split the difference! It's also been upsetting my blood test results and my nurse wants me to try something else,I asked about gilenya but she wants me to stay on an injectable for now.   So my choices are Avonex which is very similar to Rebif and carries the risk of side effects (although only once a week) ,so could be easier to manage than 3x a week on Rebif. Or capoxone which is a daily injection, with very few side effects apart from site reactions and lipoatrophy (sp?) The downside I can see of the daily injection is that it has shown no long term affect on disability, the beta interferons have done much better in trials, which is a major consideration for me as I'm still youngish! If anyone has experience of these drugs I'd really appreciate your thoughts/experiences.   I know I have to chose what's best for me and I'm lucky to have a choice, since so many have no choices at all, but I would appreciate any advice you can throw my way.   Thank you Laura x

      in General Discussion about MS

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
×