Hi I’m new here have been reading a few posts this evening after having a particularly bad day
I was diagnosed with RRMS in April 2018 whilst pregnant with my 2nd child. She was born November 2018 and I started Avonex about 8 weeks ago. I am struggling, I hate this, I hate it all!! I’m scared for my children and myself. The Avonex (I think) is making me feel like crap, before starting treatment I felt ok and life was good. Now I cry ALOT and I am finding the ‘flu like symptoms’ so difficult to manage with two children under 3. The fatigue is pulling me down more than it ever has, I can usually carry on and fight but my get up go is going!! I have been to see my GP today who has been supportive but I don’t know where else to turn, so thought others with MS may understand and have some encouraging words or guidance on how to manage this over whelming feeling of anger at my diagnosis and all that comes with it
If the Avonex is making you feel crap, ask to switch to a different drug. In the same group as Avonex is Copaxone, that doesn’t give you flu like symptoms. It’s still an injectable but subcutaneous rather than into the muscle. You have to do the injections more frequently (either daily or 3 times a week - there are two versions). Or you could ask for Tecfidera. It’s an oral drug that has a better average relapse reduction rate (50% rather than the 30% average of Avonex and Copaxone). But you have to sandwich it in between foodstuffs and some people have quite significant stomach issues at the beginning.
Have a look at MS Decisions aid | MS Trust All the disease modifying drugs (DMDs) are detailed. Your choice is likely to be limited to the drugs in category 1.1 or Tecfidera from 1.2. (I assume that from the information that you’re on Avonex.)
Can you talk to your MS nurse about your drugs (assuming you have one)? Or alternatively, write to your neurologist and ask for an appointment to discuss changing DMDs.
Taking a drug that makes you unhappy is not going to help you or your children. And it’s hard enough with small children and MS without having horrible drug reactions too. (I knew there was a reason I didn’t have any children!)
Best of luck. And never apologise for ranting on here, it’s partly what this forum is for!
