New here but not to MS

[Raingrrl]

Hi...I just found this site and have been looking around. The forum I have been participating in for several years is a ghost town so I hope this is more active. I was diagnosed with RR MS in 1999. I was on Copaxone until it stopped working for me and have been on Tysabri the last 5 years despite being JVC+. A few months ago my Neuro started me on the extended infusion schedule so I'm now going every 56 days instead of every 28 days.

[jimeka]

Hi Raingrrl, welcome, this forum is never a ghost town, sometimes a little quieter like now as I guess everyone is busy with Christmas coming. Keep involved and you will always get a reply, blessings Jimeka

[Jesmcd2 CommunityAmbassador in reply to jimeka]

Lol or sleeping jimeka hi Raingrrl and welcome, like jimeka said there is someone usually not to far away ☺ As we talk about all sorts of things. (And it's a good place to vent) But most of all we support each other!

Are you ready for the holidays?

Jes🎄

[Iona60]

Welcome Raingrrl ! I too was on Copaxone until it quit working. 10 years for me. I'm now on Gilenya. It seems to have happened to many people in this chat family. Wonder why.

[Raingrrl in reply to Iona60]

Hi Iona! I was on Copaxone for several years when I hit a brick wall in giving myself the shots. One day I just couldn't do it and thought I would give myself a break. That break turned into weeks then months then a couple of years. Big mistake!! I had my one and only big flareup that gave me lasting problems. Scared myself enough to go back on Copaxone. It continued to work for a few more years then after one of my regular MRI's my neuro said there were new active lesions. That's when I started on Tysabri. My neuro would rather have me on Gilenya but I can't take it per my cardiologist.

Its interesting that a lot of people here have had Copaxone stopped working.

[Iona60 in reply to Raingrrl]

Thankfully, my husband always gave me my shots. I looked the other way and pretended that I didn't have MS.

[Jesmcd2 CommunityAmbassador]

Iona60 l just noticed that, you and Raingrrl make me wonder. 😕 I'm on Copaxon. I really don't think l want it to stop working. How many on here l wonder did it stop working for??

Jes🎄

[Raingrrl in reply to Jesmcd2]

Hi Jes,

Copaxone has never claimed to stop all progression and/or flares. I can't even remember exactly why my neuro switched me to Tysabri because it was about 5 years ago and my memory isn't the greatest. I do remember that it was related to the results of an MRI showing new lesions. Maybe I hadn't had new lesions on any of the other MRI's.

Having said that, Copaxone kept me stable for a long time. I wonder how I would be if I hadn't been an idiot and taken a 2 year break from it. That screwed me up.

[Jesmcd2 CommunityAmbassador in reply to Raingrrl]

Raingrrl what made you decide to stop taking treatment's? I'm just curious.

Jes🎄

[Raingrrl in reply to Jesmcd2]

Hi Jes,

I'm needle phobic and even with the autoject it would take me 10-15 minutes to push the button. Right before I took the break, it was getting harder and harder to make myself push that button. Also by that point, I had to stop giving myself shots in my arms and thighs because of the lipoatrophy I experienced. I also had 3, yes 3, of those awful IPR episodes. So...its like I hit a psychological wall one day and just couldn't make myself do it. At the time, I really believed if I took a few days off, I would be able to do it again. But it wasn't until I had a terrible flare up 2 years later that I was scared into going back on it.

The interferons available at the time were not a good option for me.

[Jesmcd2 CommunityAmbassador in reply to Raingrrl]

Oh Raingrrl that had to be horrible for you! Phobias can be utterly debilitating to some. I'm so sorry.😞 My major one is peeing in a cup. Excuse me for being so blunt 😅 But l just can't do it. I have 3 beautiful daughters and did 2 times.😑 3rd was blood test. 😅😅 The other is lm terrified of the dark. I have flashlights everywhere!! 😁 My boyfriend calls my a basket case, l tend to agree sometimes! 😅😅

Honestly l hate the shot also. And there are days when of takes me an extra min to push that button. Cause you know it's going to stiñg a min. But l look at it like this, This little shot/sting l feel now, is hopefully helping me for later on.😑😕😊. Small price to pay. That and l have my Dad's voice in my head going, "God only helps those who help themselves" I hate that saying sometimes 😅

I wish you luck getting back on something. Looks like that new one that's coming out in Mar has promise 😊

Jes🎄

[Raingrrl in reply to Jesmcd2]

I am currently on Tysabri and have been for 5 years. I went back on Copaxone after the bad flareup but when it stopped working for me, my neuro switched me to Tysabri. I can't take Gilyena and nothing else available is as powerful as Tysabri. Unfortunately, I'm JCV positive and my index went up quite a bit in the last year. So now instead of an infusion every 4 weeks, I'm getting them every 8 weeks. As soon as ocrelizumab is available for patients with RRMS, I think my neuro will switch me to that because of its better safety profile. I feel like a lab rat sometimes.

[Iona60 in reply to Jesmcd2]

Copaxone is suppose to be less effective when compared to Gilenya. I had 2 exacerbations and 1 new lesion within a very, very, stressful period for me. I think it was the stress. I asked to stay on it, but the neuro said that I couldn't take the chance. I'm hoping he lets me go back on it in a year or 2 when things calm down.

[Jesmcd2 CommunityAmbassador in reply to Iona60]

Iona60 l hope things calm down for you also! I have been on Copaxon for 18mos now. And have had optic neuritis twice. But no new lesions. Thank God!

They say stress is horrible for us. You need to not do that 😁 l know easier said than done ugh. 😕

Hope your ready for the holidays! Talk about stress lol

Jes🎄

[angelite]

Hi Raingrrl,

Look, there goes a tumbleweed, lol !

I 'm actually finding this site so active that I am struggling to keep up at the mo ! : )

I'm not yet diagnosed but finding great info and support on here.

Angela x

[Fancy1959]

Raingrrl, it's Fancy1959 welcoming you to this wonderful chat room. This chat room is growing exponentially. No matter how large it's getting we pride ourselves on having caring, compassionate, and kind people with positive attitudes. It's up to you to determine how active and how involved you want this chat room to be with you. If you reply to post that you're interested in or if you make a post about questions you have or information you have people will respond back to you and they will get to know you and you will get to know them a lot quicker. But simply saying hello and coming to us like you have, you're already part of our extended family. So hang on and enjoy the variety of post you are about to experience and the dozens of people with MS that you are about to meet and interact with. We're far from a ghost town, we are thriving interactive MSAA chat room. Please take one thing away from my first post to you and that is that you need to remember that together we are stronger! Until we talk take care of yourself and enjoy the chat room.

[Raingrrl]

Thanks for the warm welcome Fancy1959!

[aliciab523]

Hi, My son is on Copaxone for 2 years, 40 mg 3x a week, tolerates it very well and MRI is stable. I hope Tysabri continues to work for you, good luck and take care

[jackiesj]

Welcome!!!Ghost Town? Oh no....keep us quiet