new and looking for some support and advise

[julie greer]

Hi my name is Julie, I have had ms sine 2000, after being on copaxone for almost 14 years it become non effective, I was then put on rebif I managed to stay on that or only 5 months, I started G in July since then I just have not felt right no energy headache blurred vision and so unhappy. I would really like to take a month long drug holiday but am not sure If I would have to go to the clinic if I want to restart, there is no point talking to my nero`s office they just insist the drug should not have those side effects I am really at a loss as what to do please help

[Chrisj]

Hi Julie,
My name is Chris and I was diagnosed in 2004. I was on and off Copaxone for about 6years starting in 2004. I've seen 5 neurologists in that time. The last one wanted to give me Copaxone. In his words, if your a male with MS we use Copaxone. The others asked me what I wanted to start with.

This was ridiculous, how am I supposed to know. I trust the last one. During my Copaxone time, I lost track how I felt so I would get of the stuff to check my MS progression. It continues to get worse at a slow rate.

I felt like crap on Copaxone. My worse side effect was anger. It didn't last long but it was intense. My neurologist took my off immediately. He suggested new and different MS medication but I refused due to none of them is a cure.

Copaxone started at $1400 a month and was $3600 when I stopped using it. WOW. I felt like I had a dollar sign on my back. I've changed my diet to gluten free. I stopped using sugar and replaced it with honey.


I walk one to two miles a day on the treadmill because I need to hold on to something. I do squats with two 25lb plates which I hold by my side in case I loose my balance. I found that wearing 10lb ankle weights helps me walk. It's hard at first but when you step down it feels more stable.

Don't have any regrets. MS affects everyone differently and the symptoms will change as it progresses. Your body is an amazing machine and will compensate. It will find ways to overcome difficulties but you have to help it.

Don't think of staying active but find ways to get stronger. Stronger than when you were well. The stronger you get physically the mind will follow. There's no right answer. It's an awful disease. Stay strong.

** 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. **

[MSer102]

Hi Julie! Gilenya is a powerful medicine so it isn't a surprise is that it can make you feel crummy. Not all side effects get listed in the drug information. Cellcept made me depressed and that isn't listed in the side effects anywhere.

You are in charge of your own body. So if you want to take a month off of medicine you can go to your neurologist and tell them that's what you want to do and that you would like them to work with you to do that. If your neuro won't then it might be time to find a new neuro.

For your safety, stopping and restarting Gilenya requires another 6-hour observation. That's why you need your doctor to be on board with your plan.

But you are the patient and it's your right to take a month - or any amount of time - off of medication (as long as you are prepared to deal with any consequences) if you want to. In fact, taking time off of Gilenya may be the only way you are going to find out if it's the medicine that's making you feel so bad.

When I was on some of the MS medicines I felt all sorts of bad that weren't listed in the side effects and felt so much better when I stopped taking them. So it makes perfect sense that Gilenya might be making you feel awful in ways that aren't in the side effects lists.

It might take some courage to approach your doctor and it will be an annoyance if you have to find a new doctor, but it's absolutely your right to do that.

[.BadWolf.]

Hi Julie, I'm sorry you're feeling so crappy I would say if your neuro seems unwilling to listen to you, time to find one who will work with you. They are out there! When I was first diagnosed, my neuro wanted to prescribe Avonex, but I had done my research and knew I wanted to try Copaxone. And when 3 yrs later I decided to take a break from it, he was supportive then too. After about 6 months med free, I am now on tecfidera ( 2nd day in ). As far as I am concerned, it's my body, my illness, I get the final say. Of course I take my drs advice seriously but ultimately what goes into my body is up to me. It's just about doing your research, and not just taking their word for it. Good luck and feel better! xoxo

[newbie but goodie]

Hi Julie. Have you called your gilenya pharmacy? They have nurses that could answer that question for you. There is definitely a point where they make you restart in the clinic so check to see what it is before you take the break.

Also, have you had bloodwork done recently? If your WBC is low, your liver function out of whack, or if you have an infection can all make you feel extra crummy. My neuro always orders bloodwork and a ua when I am not feeling well. You could just have a PCP order the labs if your neuro isn't listening to you. Don't let the doctors own your medical care. You have a say too!

[Lisabelle]

Just a quick note to encourage you to shop around for a neurologists you feel comfortable working with 😊
Lisa