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DMD treatment options in your area?

Hi Well after an unsuccessful six months on Rebif, which made me very ill, I have now developed lipoatrophy on my arm and legs with copaxone. Have seen my injection nurse today who has suggested only using six sites for injecting now and moving the injection area on my legs to higher up as these areas are also showing early signs of developing lipoatrophy (damage to fat layer under skin) as well as my arms. Current plan is to stay on it until my MS nurse can investigate what other options are currently available to me, if any. I am trying to decide what to do if staying on copaxone or coming off are my only options. Although obviously need to talk it through with MS nurse first. Has anybody else had similar problems following being on Rebif and copaxone? What options were available to you? I have been advised other interferons like avonex would probably cause similar side effects to Rebif so are not really an option. I have had a couple of smaller relapses since starting DMDs and have lots of left over symptoms from a larger relapse two years ago. I now use a FES gadget to help with walking. My fatigue levels seem to have been getting progressively worse to but I don’t know if this is a left over symptom or is getting worse on it’s own or minor relapses? Or if that is possible or my imagination? I really not sure whether fatigue is a symptom or what really? Feeling very confused and worried. I think after two years it is beginning to dawn on me that things won’t get better! : ( Mish x

Mish

Have a look at my post in the newly diagnosed area regarding this.

Can you not have a DMD in tablet form?

Thank you for your replies. So far the only option mentioned, which my nurse was not keen for me to start, was Tysabri, which would mean a trek upto Kings in London. When I speak to her I will ask about tablets : ) X

Sorry you are struggling with the dmd’s.

You need to ask for the oral drugs which are Aubagio or gilenya. Aubagio is the new first line drug. Gilenya is a second line treatment but if you have been relapsing you might be offered it.

BG12 (tecfidera) is also an option. It is available in scotland but not in England yet.

Teresa.x

Hi Teresa Thank you. I have heard of Gilenya but not Aubagio. I hope to speak to my ms nurse in next couple of days so shall ask her about them. X