On Rebif, would like to switch to LDN?

[Lori J]

Hello, I am brand new here and was dx with RRMS in June 2009. I began Rebif exactly one year ago and have a followup with neuro at ms clinic in December.
It has been a rough year coping with the side effects of Rebif-typical flu like symptoms, chills, sore throat, bad headaches and generally just feeling sick. I thought my symptoms would dissipate and disappear and they did initially however I seem to experience symptoms in cycles and the symptoms are becoming worse. Right now I am having a constant headache, nothing relieves it, I feel run down, feel like I have the beginnings of a sore throat, runny nose. I am just not myself. I dont think Rebif is for me and I have been researching and reading lots about LDN.
I know it is not an FDA approved therapy for MS and I am feeling rather intimidated to bring it up with my neuro. He is very conservative. I do know that I cannot continue with Rebif it is debilitating to my life. I am interested in what my neuro will suggest I do?
Thanks for listening
Lori J

[Bob698]

There are other mainstream options besides Rebif.
Right now, LDN seems to be the Med De Jour because people are posting about it (a lot) but do some basic research and keep your eyes open.

[cosake]

Have you considered trying Copaxone ?

It shouldn't give you the flu-like side effects that Rebif does. I was on Beta and had problems with flu-like and other side effects, so we switched to the Copaxone.

I have no side effects except for site reactions - a huge improvement over Beta. Beta and Rebif are both interferons, but the Copaxone is not.

[Lori J]

hi thank you both for your input and yes I am considering Copaxone as an alternative. I was initially drawn to Rebif because I have a friend that has been on Rebif for over 10 yrs, she participated in the trials. She has had a very good response to the therapy. The always feeling sick is starting to get to me not just physically but mentally as well. I have given it a good try and now realize that this may not be the DMD for me. My second alternative always was Copaxone until I began hearing about LDN. I think I am also attracted to trying LDN because it seems to have minimal side effects and it is in pill form. I am still wary of Gileneya and may consider that too. Thankyou for your input, definately food for thought and yes I have to do my homework
thankyou

[opiegirl]

Hi Lori,

I have been on LDN now for six weeks and I am feeling really well. Better than I have in a long time. I don't agree with Bob that it is Med De Jour. I did a lot of research before I decided I would try it and I am happy I did.

Your reasons for stopping Rebif have always been the reason why I never have taken a DMD. The side effects always seemed worse to me. Thankfully, my course has been manageable and relatively mild, so it is easier for me to say this compared to some.

Don't expect your Dr. to be open to it, but don't be discouraged, find a compounding pharmacy and see if they can help you.

Good luck with your decision

[Lori J]

Hi Opiegirl

Opie hi and thank you for your input and I am glad to hear that you are doing good. I have been doing alot of reading and research in regards to LDN in the last little while, and if I do my homework properly and as you said find a compounding pharmacy I am definately presenting it to my neuro.

All I know is that I have given Rebif a year and I feel awful most of the time and it is really taking its toll on me. I also am having a flare right now and so I feel that it is not working as effectively for me as I was hoping.

Again, thank you for sharing and this info sure helps, would love to hear more from my fellow MS ers