My First Relapse in 7 Years

[Jen's Solitude]

No actually my neuro didn't mention any other possibilities, he just said I could not take it any more. He called it ocular edema although I don't know what the difference between the two are. He did say that he and the eye doc agreed it could only be from the Gilenya. I read that ocular edema was a rare problem so you could imagine how disgusted I was to be one of a small percentage that developed the problem. By the way I do have diabetes but they didn't seem to think that was an issue. Shortly after discontinuing Gilenya all my issues with my vision cleared up but I am due to get my eyes checked again as soon as I have the energy. I discontinued the Gilenya within a couple of years of our move here to Delaware and haven't tried anything else since.

I found PT very helpful. I was only able to go 3/4 times and then the fatigue came back and I just did the exercises here at home. I have noticed that I am able to catch myself now indicating my balance is better and my leg and ankle strength keeps improving as well.

[agate]

I think macular edema is a type of ocular edema. Ocular edema would just mean swelling of the eye, while macular edema refers to swelling of the part of the eye called the macula:

Only registered and activated users can see links., Click Here To Register...

It's too bad that Gilenya gave you that problem. These new MS drugs can do great things, but then there are the side effects.

[Lazarus]

Hi Agate. I did take Copaxone but tired of the injection site reactions years ago and quit taking it. My neuro in NJ persuaded me into trying Gilenya (spl?) and I actually felt a tiny bit of improvement with my fatigue. Unfortunately I was one of the few people who developed macular edema as a side effect. I tried to ignore the vision problems because I was so pleased with the decrease of fatigue. Finally I went to have my vision checked and it was all over the place. My eye doctor called my neurologist (both are) here in Delaware) and they both agreed I had to come off the Gilenya. I was beyond disgusted and disheartened.




Cherie right now I am not taking anything. The other oral pill (can't remember the name) scares me as much as Tecfidera because of my other health issues. So right now I am still in search of a treatment.

Dar,
I have been incredibly successful with my medications. I am progressing so I do not want to mislead you but I am physically active and farming along side John.

I use Ampyra which helps me walk.
My significant med is Rituxan. It has a good record and usually gives no bad side effects. Cherie took it and had a rough time but that is the exception. It is an infusion I get ...two days every six months. It keeps me active and alert and moving. Toward the end of the six months it is obvious that I need another infusion!

I take many symptom management meds.

There are so many choices now it must feel like a maze.

Linda

[Jen's Solitude]

You are right Laz, it does feel like a maze. I have tried so many different things over the past twenty plus years that I can't remember them all. Some I was allergic to, others just didn't work for me. Ampyra is familiar sounding but I don't remember why. Maybe I tried it and it didn't work or I was allergic. Fatigue/exhaustion is my main problem. I have Lyrica for nerve pain which has been a great help but nothing long-lasting for this mind-numbing exhaustion. I'll keep looking for the next drug though as my energy allows. Thanks for sharing your experiences with me.

[Howie]

DAR, I don't know if you remember me, but I remember you. I've been coming to this forum since '99. It was a very different place then. Now, it's a true support group.

I guess you could call me the forum "nut". I love to make folks laugh, and forget about MS, even if it's for a moment.

THAT is my medicine. I take nothing for my MS, and have been blessed with still being able to walk and drive. I live with my two cats who have been with me on this strange MS journey.

It's great to see you back, and posting, and I wish you the very best.

[Cherie]

DAR,
You might ask your neuro about Rituxan. It is given off label for MS although clinical trials are still ongoing and showing good effect. You receive two infusions two weeks apart then repeat the process every 6 months. It is well tolerated and the most common side effects are itching, headache and slight temperature elevation the day of infusion I got all of those with the first of 2 then none with the second infusion 2 weeks later. But I felt like I continued to slip toward progression so went back on REBIF and think that process is slowing but clearly not halted. I see my neuro Thursday and suspect he is going to suggest another round of Rituxan.

[Jen's Solitude]

Of course I remember you Howie! I think I replied to you on my other thread. You are truly unforgettable in all the best ways.

I wish my body would react to MS the way your body does. I would love to be able to function with no meds.

I am wondering if I will ever be able to drive again since my right leg is so messed up. I am hoping if I give myself time my ankle will continue to get stronger and I will be able to press on the gas pedal and brake pedal once again. Thank you for your encouraging post Howie

[Jen's Solitude]

DAR,
You might ask your neuro about Rituxan. It is given off label for MS although clinical trials are still ongoing and showing good effect. You receive two infusions two weeks apart then repeat the process every 6 months. It is well tolerated and the most common side effects are itching, headache and slight temperature elevation the day of infusion I got all of those with the first of 2 then none with the second infusion 2 weeks later. But I felt like I continued to slip toward progression so went back on REBIF and think that process is slowing but clearly not halted. I see my neuro Thursday and suspect he is going to suggest another round of Rituxan.

I know nothing about Rituxan but will look into it. My neuro never even mentioned it as a possibility. He just gave me information about the oral drugs. Is it FDA approved for MS? My insurance usually approves everything FDA approved.

Since I won't be going back to my present neuro, I can investigate it and bring it up with my next neuro. Thank you and Agate for bringing it to my attention.

[Virginia]

Dar, another thing that I will chime in with is that people often get help with Rebif. I have been on it since 2002. Their patient assistance program will work with you if possible. I know that some of the other drugs will also though I am not sure to what extent. There is no way that I could afford Rebif at all if it were not for the assistance that I have been given. I am very thankful for it. I don't know your insurance situation, however MS Lifelines is who administers the patient assistance.

[Lazarus]

Dar,
The rituxan is done at an infusion center and so I never have any copay.

Not FDA approved for MS..I think. Your neuro gets it for you by showing that the standard MS medicines are not working for you. That's the way I got it.

Linda

[Jeanie Z]

:) Hi DAR, I have been on LDN since 2000. Info on it ar Only registered and activated users can see links., Click Here To Register... and it requires a RX. I take a 4.5 mg capsule nightly. I have quit progressing and have had NO new symptoms since going on LDN. I send my RX to Only registered and activated users can see links., Click Here To Register... and he ships it overnight. Some of my friends who use LDN had symptoms improve. My symptoms did not improve but I am happy to not be progressing.

It is used for addiction in 50 to 200 mg doses, so it has to be compounded and is off label use so no insurance covers it. It is about $35. a month. Also none of the side effects of the large doses happen with 4.5 mg. It is used for several immune system diseases, so click on the MS link. Because it is such a low dose it can be taken with other MS drugs. Jeanie :)

[Howie]

Good info Jeanie!

[Whisper]

Hi Dar! It's so nice to see you. I was sorry to read about your relapse. I'm like Howie in that I don't take any meds. I haven't ever received a dx of MS (haven't had any testing since 2004). I'm quite content to be where I am. My family doctor treats me as best he can and 'believes' me and that is medicine in itself. I hope you continue to improve!!! Best of luck and health to you!
Lorraine :)
I don't know if you remember me or not...I think I was 'TiredOut' on the old board!

[nuthatch]

I'm another one on LDN, same as Jeanie. Been on LDN 4.5mg since around 2005 after repeated debilitating attacks while using Avonex. I felt miserable the entire time on Avonex, so decided to give LDN a shot. Neuro would not prescribe it at the time, so GP prescribed it, saying it could not hurt. Best thing I ever did, immediately felt so much better. No real attacks since and no new lesions have shown on subsequent MRIs. I think I was a test case and made a believer out of my neuro, because he now prescribes it for me and for other MS patients he has.

I do have a slow progression, but that is to be expected with this nasty disease. Fatigue is so much less now than before. Unfortunately MS did a lot of damage to me in first 5 years after diagnosis in '99 at 47 years old. I wish I had tried it sooner. I take only thyroid and BP meds, besides the LDN.

Hope you find what works for you soon.

[Jen's Solitude]

Dar, another thing that I will chime in with is that people often get help with Rebif. I have been on it since 2002. Their patient assistance program will work with you if possible. I know that some of the other drugs will also though I am not sure to what extent. There is no way that I could afford Rebif at all if it were not for the assistance that I have been given. I am very thankful for it. I don't know your insurance situation, however MS Lifelines is who administers the patient assistance.

Good Morning Virginia! My insurance would cover Rebif I just don't want to take it. I was hoping to find an oral drug so that I could get away from needles and injections. Even after 10 years of Copaxone I never conquered my fear of needles but I thank you for the helpful information and I'm happy to read that you get assistance with the high cost of the drug.