Having Injection Problems

[Mandaroo]

I was diagnose with MS in the Sept. of 2016 with a flare-up/relapse every 1-3 months. They started me on Avonex, which didn't work, then switched me to Rebif. The medication itself seems to be working, I haven't noticed any new flares. However, I cannot administer it myself.
My husband has been doing it for me.

Now that I'm back at work, our schedules are complicated, and I find myself constantly rearranging medication days so that we can get it done. I know this is dangerous and problematic, and I think I may have missed a dose or two along the way.

When I brought it up with my neurologist, she thought that oral medication might be a better fit for me, and referred me to another neurologist to handle that. I booked his next available appointment. On April 26th. I really don't want to continue the injections that long, but feel like I don't have another choice. I'm scared that going off meds for the first time would have unfortunate results, and don't want to put my husband and two young sons through that. However, the Rebif injections burn when administered, and leave red marks for weeks. Advice?

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[twain]

Sorry to hear you're having injection problems. Many people do. Are you aware that both Avonex and Rebif come in auto-injector devices -- which make it much easier to do yourself. If Rebif seemed to be working, I would try everything you can to stay with it, since it can take months for any new DMD to reach a therapeutic level. Also, there are lots of injection tricks that might help you and it does get easier as you get more experienced.

On the other hand, as your neurologist noted, there are many oral DMDs now, so certainly don't feel trapped by injections.
I am surprised your own neurologist wasn't able to prescribe a new oral DMD for you. Seems odd. Did you ask him why? Even if only on a short-term basis until you can find another neurologist.
Not sure where you live, or what your insurance is, but I imagine with some calling around you could get an appointment with another good neurologist before April of next year -- especially if you explain the problem.
Good luck and let us all know how you are doing.

[hunterd]

Sorry to hear you're having injection problems. Many people do. Are you aware that both Avonex and Rebif come in auto-injector devices -- which make it much easier to do yourself. If Rebif seemed to be working, I would try everything you can to stay with it, since it can take months for any new DMD to reach a therapeutic level. Also, there are lots of injection tricks that might help you and it does get easier as you get more experienced. " I firmly believe in the saying "if it ain't broke, don't fix it". There a way you can have a visiting nurse administer injections for you?
If you do need to switch to an oral DMD, there are many good choices out there. I wish you luck.

[AriD]

Sorry about your difficulties with injections. Have you tried speaking with the rebif company? They may send a nurse out to help train you. They want you to stay on their med so do have resources. Or your doctor could have his nurse or VNA work with you. Also, someone at your work may be knowledgeable about injections and willing to give yours to you. I used to give one of the doctors at my work her injections. Another option might be your employee health department. A nurse there might be able to do it for you.

Learning to do it yourself with or without an auto injector takes a little time. But, once you get used to doing it yourself, it gets easier.

Skipping doses or switching around your schedule can lead to much worse problems for you.

Also, why can't your current neurologist just switch you to an oral medication if that's your choice. Why do you have to wait to see a different neurologist?

[TaoWarrior]

I had similar problems with betaseron I only stayed on it 6 months because of issues. I am on the skinny side and any subcu injection is tough to find a spot with enough body fat.

Anyway it took me 3 months to finally get on Gilenya all of which I was off any DMD but in the long run it was the right choice for me. I am a walking talking (typing) billboard for Novartis and Gilenya. 6 years on it, 12 years with MS and I am working as a fireplace technician something that takes walking, lifting, and decent cognitive abilities all things that at 12 years with MS I was led to believe wouldn't be possible.

You got to do what is right for you but if you are constantly having injection site reactions you are probably in a situation where the cure feels worse than the disease, that's how I felt on Beta. Some good advice about getting training on injections if you feel Rebif is working well. The orals are amazing though so don't be afraid to switch.