And I’m due to start Avonex on Friday and they have now said its unlikely they will allow me to start it. Why could that be? I was diagnosed with rmms and I’m now petrified they think it’s developed to progressive. I have never felt so ill in my entire life as I do now. My legs are like dead weights and numb and my spine and neck are crippling me. My neuro wants me to be admitted again and is phoning me tomorrow. I’m 29 and a full time carer for my disabled little boy who is 2. I have a husband but he works full time but thankfully has been granted emergency leave for the next 2 days. I’m so scared,I can barely look after myself let alone my childrens and I fear my husband is going to have to pack in work full stop and I have no idea how we will cope money wise. Sorry,just needed to speak to someone who understands.
Sorry to hear your having a tough time I have 2 kids 4 and 9 months and it’s a struggle. Thanks god for my family I’m on extavia started in dec had 2 nasty relapses this year a 3rd that went I un noted and just started a 4th relapse at Christmas. I’m struggling to look after me at the moment and my x husband has no interest in helping out I just need to ‘stronger’ and his sister said don’t speak about real illness like cancer -eh hello ms is not pretend. People are so ignorant. Sorry I feel like I’ve moaned to you now. Hope things sort themselves out x
Sorry to hear your having a tough time I have 2 kids 4 and 9 months and it’s a struggle. Thanks god for my family I’m on extavia started in dec had 2 nasty relapses this year a 3rd that went I un noted and just started a 4th relapse at Christmas. I’m struggling to look after me at the moment and my x husband has no interest in helping out I just need to ‘stronger’ and his sister said don’t speak about real illness like cancer -eh hello ms is not pretend. People are so ignorant. Sorry I feel like I’ve moaned to you now. Hope things sort themselves out x
Hi Amy
I think it’s likely they will want to start you on something more effective than Avonex. If you read up on the DMDs again you will see that there are ‘first line’ treatments and ‘second line’ treatments. Avonex is one of the first line treatments and is used for newly diagnosed RRMS patients to reduce the rate and severity of their relapses. (I was originally on Rebif because I had two relapses within three months when I was first diagnosed.) When the first line treatment no longer works then you can switch to one of the second line treatments which is what I have just done - I am now on Gilenya because last year I again had two relapses within three months whilst I was on Rebif which means Rebif wasn’t working for me any more.
In your case as you are having another relapse so soon, I would guess that your neurologist wants to put you straight onto a second line treatment. This is because trials have shown that they are more effective than the injectables at reducing the rate and severity of relapses in RRMS. When you read up on them it can be a little alarming as you will see things like ‘rapidly evolving RRMS’ or ‘highly active RRMS’ and so on. This doesn’t necessarily mean that your MS is going to continue being highly active. I’m sure there will be other replies that will tell you how they had a horrendous first year or so with MS and it then settled down for many years. Unfortunately that is the nature of the beast. With the right drug, your future may not look anything like as bleak as you are already imagining. (There are even cases where the patient has declined drugs and the MS still settles down of its own accord - personally I was never going to take that chance, I’ll take whatever drugs they recommend.)
For now, concentrate on getting over this relapse and then wait to see what your neurologist has in mind. I am sure he will discuss all the pros and cons with you and will want to do his best to ensure that you don’t carry on relapsing at this rate.
<>, get well soon
Tracey xx
Elmo - would you be so kind as to explain a little more of what the second line treatments involve please. My start on Avonex has been postponed and I have a 5 day course of steroids and a meeting with my neurologist next Friday to discuss where we go from here.
Amy - Gilenya is one of them. That’s the one I am on and is simply a daily tablet. The trials showed it reduced relapses by an average of 60% compared to taking nothing at all whereas the injectables reduce relapses by 30% on average. The other most common one is Tysabri which is a monthly infusion given at hospital. I don’t have experience of Tysabri but have heard some very positive stories on here and believe it is very effective for very active RRMS. You can find out more about these drugs here:
There may also be trials available at your hospital for other treatments and your neurologist will discuss them with you if he feels you may be eligible.
I thought you may need steroids for this relapse. They are not nice themselves but they do put you on the road to recovery so much quicker than doing nothing. For me they make the difference between shuffling and walking before I have finished the course. I hope they work for you and wish you luck for the future. Keep us posted.
Take care <>
Tracey xx