I’m at work and although do not comment often because of work and where my screen is!
I have had MS for 13 years this year and am RR and although have had relaps thank god they have not been too bad but I hate injecting myself. I know we all have to do things that we don’t like but I hate it and hate the time leading up to inject which always hurts and three weeks ago I reacted to the injection site on my tummy and came up with a huge rash the size of my hand which is only now disappearing.
I wondered whether it would be advisable to stop doing it which I have more or less done over the last couple of months and felt no different apart from no sore bits and swellings. I have been taking this for 3 years.
Dear Martina,this time five years ago I was bumped up from Relapsing/Remitting to Secondary.The Neurotic decreed I could have a course of MITOX, and then start Copaxone.The Mitox didn’t appear to change things much and the Copaxone never caused any injection site issues and didn’t change my MS symptoms or gradual progression one bit.
I cancelled it four years ago in June having taken it for 13 months, as it was doing nothing, except cost the NHS £5-6 K a year.We all have our own version of MS and from first going on the sick 12 years ago it has been a gradually accelerating progression,slowed by me occassionally demanding IV steroids.My silly little(?) body cannot tolerate them or oral 'roids anymore.
The decision to stop the Copaxone was mine,but I listened to the opinions of the Bird of the time and she saw no point in taking the stuff either.I have no regrets about stopping it 'cos I looked at all the evidence and it was doing nothing.I tried LDN for six weeks but it didnot agree with me, and as I am now a morphine addict won’t be having another go.
I gave up Avonex and a few months down the line thought? Hmmm I don’t feel any different what so ever , then bang !!! Bloody relapse. Then they put me on Rebif and was on it for quite a while but got peed off with feeling rubbish and injecting all the Time, so I gave that up and again a few months or so down the line thought? Hmmm pointless me having any medication because I feel the same as I did when I was on it, then bang relapse!! I’m now on Copaxone and its by far the best one for me and I don’t want any more relapses so I’m staying on it. anyway just make sure you are doing the right thing (I’m so angry with myself for stopping the first medications as it really did ruin so much) Take care Brett
Hi there - I’ve been on copaxone for nearly 10 years and whilst, sometimes, I wonder if it is helping, then, I look at myself and say - “hey,it may be keeping it at bay” so I stay on Copaxone, until they can find a cure…
This is just my personal experience and therefore possibly not relevant to you, but if I could go back in time I would refuse to come off Copaxone when my neuro suggested it. Long story short, the neuro thought I should stop it because it wasn’t working very well any more because I started a relapse; I waited for the pills that my neuro assured me would be available very soon; 15 months later I had had back to back relapses, the pills still hadn’t been approved and my EDSS had gone from about 1/1.5 to 6.
Thankfully the relapses stopped when I started Rebif, but I will always regret not fighting to stay on Copaxone while I waited for the pills. It may not have been working as well as it used to, but something is definitely better than nothing!
If it’s the daily injections that you can’t cope with any more, but you are still RRMS, then perhaps switching to something with less frequent injections would suit you better?
Thank you very much for all your very kind comments and I am going to try reducing the depth but I will keep up with Copaxone as I do not want to have anymore relapses if I can prevent them as I need to keep working.
I am just going through a hard time having split up with my partner who was a bit useless anyway but it’s for the best.
I know no one likes injecting themselves but if it anyway can help prevent a relapse than it is worth I have realised thanks to everyone.
Thank you very much for all your very kind comments and I am going to try reducing the depth but I will keep up with Copaxone as I do not want to have anymore relapses if I can prevent them as I need to keep working.
I am just going through a hard time having split up with my partner who was a bit useless anyway but it’s for the best.
I know no one likes injecting themselves but if it anyway can help prevent a relapse than it is worth I have realised thanks to everyone.
my ms consultant told me that there is a plan to offer copaxone in a double dose to be used 4 times a week. just waiting for the manufacturers to produce the needles.
Read the post from Karen (rizzo) above.
I got re-assessed 10 days back from 1.5 to 6.5 on the EDSS. I expected to see just a neuro, but there was an MS Nurse there as well.
The Neuro seemed to be looking for ways to take me off Copaxone (6.5 EDSS is the top limit) to the point of suggesting that a tremor in one hand could indicate a relapse. Note that it is the hospital who write the prescriptions for my Copaxone.
Now, my relapses have never been really bad - just total fatigue for about a week. I have not had one for a year. I do not want to give up Copaxone since I believe that it has held the relapses at bay.
The MS Nurse looked like she was agreeing with the Neuro, but suggested that I be seen again in “only” six months, and got him to agree with this. I plan on raising this with the Copaxone nurse who is due to visit me next week.
Don’t just give up - phone the Connections helpline and talk about reactions.
anyway just make sure you are doing the right thing