Forum

Knee jerk reaction?

Everyday living
#1

Good evening all,

I am new to this forum and am hoping that you will be able to offer me some advice.

Firstly, a little bit of my history: I was diagnosed with RRMS a little over 12 months ago. My first ‘episode’ was in 2011 and was pins and needles that affected my upper left hand side (head, jaw, anterior chest, and arm). 12 months later I had optic neuritis in my left eye. MRI, lumber puncture, bloods etc eventually led to my diagnosis in October last year. During the various consultant and nurse appointments that followed, DMD’s were discussed, but I chose not to go down that route as I didn’t feel ready.

In March of this year I had another relapse (loss of movement in my right hand) and agreed that maybe it was time I considered treatment. After much reading, and weighing up of pro’s and con’s I settled on Avonex as the most appropriate treatment for me, and received my first dose in May. 6 weeks later I experienced my 4th relapse, again pins and needles and again on my upper left hand side (this time my back and shoulder blade)

Still being quite new to this, I did not consider this latest episode to be significant enough to report, and so did not mention anything until my routine consultant appointment in September. However, when I did mention it, there was much discussion between the medical professionals with the overall opinion that I need to change my treatment, as Avonex is not working.

I realise that I probably have a lot to learn, (which is kind of why I’m here tonight), but the crux of my dilemma is this: Prior to starting with Avonex, I was advised that I may experience some side effects for up to 12 weeks whilst my body became accustomed to the drug, but if this is the case why then is it possible to categorically claim that the drug is not working after only 6 weeks of treatment? It feels very much like a knee jerk reaction to me, but since I have no yard stick against which to compare, I may be totally wrong in my judgement.

I would be very grateful for your thoughts and comments and fully appreciate any help that you may be able to offer.

Many thanks,

Eve

#2

Hi Eve,

First I will come clean, and say I’m not on, and have never been on DMDs. I was a very borderline case anyway, so with my neuro’s blessing, we decided to leave things alone and hope for the best. Four years on, I am not doing too badly, touch wood, so we have not yet had cause to revisit that decision.

However, I’ve been around these boards some time, and do read-up about the DMDs, just in case I might ever change my mind and want to take one (or have little choice).

My understanding, like yours, is that they do take some time to build up to full effectiveness within the body, so instant results are not to be expected. Personally, like you, I would suspect any relapse just six weeks in probably still stems from the time before you started the DMD, and so is not a fair measure of whether it is working.

But then again, it depends what you want out of this. If there is a chance that what is on offer is one of the newer tablet forms of DMD, so goodbye to injections, you may not want to protest too vigorously about what looks like a snap decision, as you might end up with something that is both easier and more convenient to take AND has a higher success rate.

So yes, I do think it’s worth querying whether six weeks was really a fair test of whether Avonex was working, but you might want to tread quite carefully, and phrase it as curiosity, rather than doubting the decision, so that you don’t accidentally close the door on any options that might be more attractive.

Tina

x

#3

hi eve

anitra has given excellent advice.

on the one hand you were happy enough on avonex but there are several tablet forms of dmds.

​so as tina says, phrase it as curiousity so that your consultant has the option of offering an oral therapy.

good luck

carole x

#4

Hi I was diagnosed about 14 years ago and have been lucky to only have a bad relapse needing steroids about 5 times.

I was lost in the system so have not really seen anyone until now. I am going to use this forum from now on to get info i need as was unaware there were any new treatments available. I said no in the early days to injecting myself as i’m a wimp and don’t like needles, also didn’t think i was bad enough as only relapses every 2 years

I am thinking its about time I tried treatment as I have had 2 relapses in the last 6 months one being the loss of use of my right hand. This frightened me as i couldn’t work being that I am a hairdresser, all my other relapses didn’t seem as bad. You can still work with one eye, pain or not walking properly.

The neurologist thinks it a good idea as things are progressing quicker.

The options i have been given are Tysabri (intravenous once a month) and alemtuzumab (intravenous 5 days year 1, 3 days year 2.

Is there anyone who is on or have tried either of these that can help me make a decision?

Thanks

Ness