I don’t really post regularly on here - not sure, perhaps I ought to get a bit more support. Anyways, had an appointment at Hallamshire today - saw my consultants sidekick wh was lovely. It turns out that my last scan in December has shown more lesions whilst using Copaxone and therefore the ‘symptoms’ that my MS nurse said was me ‘overdoing things’ was actually classed a relapse. I am a bit disappointed really - not sure why - maybe I was expecting the copaxone to be a miracle drug…
My consultant does however want me to change to Avonex, which he is arranging and to be honest this could be a good thing cos the itchiness I was experiencing with the Copaxone was making me start to dread taking the injection. I atually feel sick at the thought of a deeper injection but he said to give it a try
Also a tad annoyed that my MS nurse didn’t really take me seriously back in June when I brought my symptoms to her attention - but I’m still new to all of this so not sure whether I ought to have pushed it further - will know for nextime.
Also a rant about Hallamshire lol - the damn lifts were under ‘fire control’ when I need to go down to C Floor from M floor so had to walk all the way down the stairs with a gammy painful foot.
The 'sweet ’ bit about the post is that they are trying me on Gabapentin for my pain so fingers crossed it works.
Sorry for the winge but just felt I wanted to put my thoughts out there - I suppose I’m justr asking selfishly for a hug xxx
Hi Amanda 1973, Firstly, sorry to see nobody else has replied to your post yet. I, like you, never used to post much on here, just use the site for information. Been using it a lot more recently and finding it very helpful/re-assuring. Sorry to hear of your disappointment. I totally agree how difficult it can be to tell whether it is just ‘over exerting’ or whether it is a relapse I am newly dx with RRMS and feel very much the same. However, recently started Rebif. Strangely, also experiencing itchy skin. Very frustrating. Mood very up and down and nasty headaches. Good to hear that you are now getting the support you need. Take care. Tracey
Hi Sending you lots of hugs you deserve it. I know the feeling about not wanting to push too hard with MS nurses. I am in a similar situation I have appointment on Fri and it’s just typical I now have this stupid throat so she will blame that. I need to be firmer with her though. I know infections don’t help but we are still no nearer to managing my symptoms effectively maybe I expect too much. Hope you are feeling brighter now Take care
I felt exactly the same in August. I knew I had had one relapse last year but had convinced myself that when my other leg played up it was just because it had been compensating for the bad leg. I did sort of know it was the same symptoms but because it had happened so soon I didn’t want it to be another relapse and so was partly in denial and partly didn’t think it could be a separate relapse.
When my neuro confirmed they were two relapses within three months and I needed to change drugs I felt a bit tearful. I felt silly too as it wasn’t entirely unexpected. It still comes as a kick in the guts to hear the disease has been more active when you’re taking a drug that is supposed to prevent this.
For me the silver lining was no more injections - I have now switched to Gilenya which is a daily tablet. I didn’t mind injecting Rebif but I can’t say I miss it I am so glad I had to make the switch now, I am feeling much more positive and I am still recovering from the relapses. I’m back to yoga classes and doing as much as I can to help myself.
My local nurse was hopeless too - she dismissed a sensory relapse I had in my first year as just symptoms because ‘they weren’t preventing me from doing anything’. I had severe itching and burning in my left arm and had already lost one week of sleep when I spoke to her. She prescribed amitriptyline which took another week to kick in meaning I lost another week of sleep. This was an entirely new symptom but she still said it wasn’t a relapse. When I saw my neuro at annual review and described it to him, he logged it as a sensory relapse. Needless to say, I now ring the nursing team at the hospital for information and advice. I’ve decided the local nurse knows less than me …
Anyway - another <>, I hope Avonex works out for you.
I have been on Avonex for over a year now and Gabapentin and the results have been great. My last scan showed no more damage and the damage that i do have has become dormant. I have no idea how long this will last but for now its great!
Once you start with the Gabapentin you do need to make sure that you take it as if you miss a few tables you will notice the difference, while driving down to devon for a holiday last year i missed a days worth of tablets and found that the next day i was so spaced out in the morning my wife couldnt make out what was wrong with me but by the evening I had realy bad headaches
Having said that, both the Avonex and Gabapentin have really worked for me and hopefully they will work for you.
Hiya, Big hugs being sent your way. Like you I’m going to be switching to avonex as I have been getting bad site reactions and the pain whilst injecting was is awful. Deeper injections do sound a lot worse but at least they are noël once a week. Must say I’m looking forward to this tablet that’s been approved, will be soo much better to have!!! I find gabapentin really good. Had no side effects from it at all. Hope it goes ok for you Take care Kate x xx
Hiya, Big hugs being sent your way. Like you I’m going to be switching to avonex as I have been getting bad site reactions and the pain whilst injecting was is awful. Deeper injections do sound a lot worse but at least they are noël once a week. Must say I’m looking forward to this tablet that’s been approved, will be soo much better to have!!! I find gabapentin really good. Had no side effects from it at all. Hope it goes ok for you Take care Kate x xx
Hi Amanda Had Avonex for many years (10 +) and it worked for me. Had flu like symptoms after injecting but managed that with paracetamol. Have Tysabri now. Gabapentin worked for me for a while. Now on Pregablin and nortriptyline for pain. Sending you BIG hugs Donna
Thank you all for your kind responses. I felt really upset today and there was a lot of ‘eye leakage’ - I was ok until the guys at work asked how I got on yesterday - bet they wish they’d never asked now ha ha.
I guess its still very much trial and error for everyone.
Just another question - what does the Avonex injection ‘feel’ like? will it make ya leg go dead like dead-leg lol?
I am so glad I had to make the switch now, I am feeling much more positive and I am still recovering from the relapses. I’m back to yoga classes and doing as much as I can to help myself.