new to site, new to MS, new to copaxone

[sm1212]

Hi all, glad i found this site, so far it has been very informative and helpful. My story really begins 4 years ago when i awoke from sleeping with NO vision in my right eye. I was hospitalized and on steroids for a week- but my vision never came back! At that time there was no rhyme or reason. the Doctors did mention MS a few times, but after MRI's, spinal tap, blood, etc.. they were not ready to confirm i had MS, I was not presenting as the norm, I was over 40 at the time too and very healthy every other way.

I did not have any other symptoms for 4 yrs to the date and compensated well with vision in only one eye now.. then my 'good' eye had a 20% loss of vision, i rushed to get steroid treatment and after 1week at 1000mg IV- my vision in that eye came back 100%. but this now meant new testing, new MRI's confirmed new lesions on the brain, and i was officially told i have MS.

the next couple of months i did research, changed my diet to GF, low sugar, low fat and tried to be healthy.. not a lot of other symptoms to speak of except some numbness sometimes in toes and fingers. I finally relented i went on copaxone 20mg/daily injections. the only terrible side effect i had was skin reactions- VERY BAD ones. lumps, bumps, bruises, redness, tenderness, never going away b/c shots were every day.. fought with insurance company, after 2 appeals finally am on the new 40mg 3x/week copaxone.

the shot itself still sucks, i still have skin reaction, but it's only 3days a week and my body/ skin have some time to heal. I had to eliminate the arm injection site fully b/c my arms are to thin and that was very painful.. being on the 3x week allows me to just use the other sites and I am seem to be doing well. I just don't see injections myself as a life long solution.. what is the next best thing out there with no to little side effects like i have now?? My neuro was very big supporter of the injections , scared me away from all the other stuff on the market... any advice would be appreciated.
thx you so much.

** 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. **

[hunterd]

WELCOME TO MS WORLD SM1212!!! we are happy that you found us, but we are sorry you had to. i CANNOT answer your questions regarding Copaxone as IM primary progressive. but I am sure some of our members who have experience with this will answer it for you. Our members are rather kind and they also step up to help when they can.
We also feature a chat room with schedduled chats every night from 8 PM until 9 PM Eastern time and they often go until all questions are answered. You can also request and a certain person to join you for a one on one chat in the Annex. Here is a link that will take you there. http://www.msworld.org/community/cha...hat-room-info/

[Wonderdog lady]

Hi sm1212 I am so sorry you have been diagnosed with MS. I too started with copaxon. I suffered the same painful site reactions. I just wanted to tell you there are some oral medications that may work quite well for you. I have had experience with both Gilenya and Tecfidera. You have to go through some testing processes to determine if you are the right fit for the medication. This is something to discuss with your Neurologist. Gilenya didn't work for me but I have been able to take Tecfidera for the last two years.

I have been very happy with the results. It is OK to be a little apprehensive about taking medications that has some scary side affects. I was too, but I am really glad that with my Neurologist support we found a good oral medication. I have been lucky I have not experienced any side affects from the medication and my last two MRIs have shown no new activity.

I wish you all the best in finding that best medication for you. I hope you are able to say goodbye to those nasty injections.

[Boymom123]

Copaxone

Hi SM1212...I am so sorry you are here but you are with some great people.

I have been on Copaxone 3x per week since last April and I have some tips. First, if you use the Autoject, play with the depths on it. I can tell you it made a huge difference for me. On my stomach/butt/hip area I am an 8 (lots of meat there ) and on my thighs I am a four. I also give myself my injections in the evening and then ice for a good 1/2 hour afterward. By the next day there is just a red spot with a mild hump, but then it goes away after 24 hours. Also, check with your doctor about different injection sites. The shared solutions people stick with the grid, but my doctor gave me some great advice and it helped a lot.

Also in general, after a few months my injection reactions got a lot less, but it took a good 6 months to get to that point. Hope this helps!

[cjtmn]

Hi sm1212! I have peeked around this board for awhile, but don't post too much. I am recently Dx as well. I find it curious that your neuro is shying away from the stronger meds. From what I have been reading, it seems like many MS Specialists are choosing to start with more aggressive treatments for people who have more severe disability to start - especially vision and walking problems.

My neurologist was a little different. She basically said that the best treatment is the one you will stay on and take as prescribed. Her preference was to start with the less "aggressive" options (those with better stats but also higher risks) so we had somewhere to go if my first or second choices weren't working well. However, it was up to me in the end.

Every doc is different, so I just share that for you to hear of a different experience. If you are miserable on the 3x week injections still, maybe talk to your doc about Avonex or Plegridy, which while still injections, are far less frequent? Or learn more about the oral meds? I would hope your doctor is open to a discussion so you can find something that is easier on you. MS is hard enough!

Wishing you all the best,
Cheryl

[Mamabug]

I also had a lot of trouble with Copaxone 20. Switched from Betaseron, in 2008, because B hadn't been very effective for me. With Copaxone, like you, I had welts, lumps, redness, and, not just tenderness, but daily pain that I took OTC Advil or Tylenol round-the-clock every 4-6 hours, because it woke me up at night.

I called Shared Solutions to get injection tips and tried them all. A Shared Solutions nurse then came out to re-train me and make sure I was injecting correctly, which I was. Site reactions were just as bad following her visit as every other time.

But, I'd noticed that, when I injected in my abdomen (rather than my hips, buttocks or thighs), I had no, or very minimal site reactions. Shared Solutions was unable to veer from their protocol to give me the go-ahead to inject less frequently, but my MS Specialist approved injections of C20 4x per week, in 4 different abdomen sites.

I did that for quite a few years, with no flares at all between 2011 and 2013. But, in 2014, I had two minor flares. When Copaxone 40 came out in 2015, my doc suggested that I try that instead, so that I would be getting a full dose, but still not needing to inject 7 days a week. I started in April and I like it.

I take 3 syringes out of the refrigerator at the beginning of the week and inject them M, W, F. When I remember, I try to space them out a little so that I don't have to go a full three days without an injection. ie: Instead of 48 hours, 48 hours, 72 hours for time increments, if I give my doses on Monday morning, Wednesday afternoon and Friday evening, it's more like an even 54 hours, 54 hours, 54 hours.

Copaxone works so much better for me, at keeping my flares less frequent and less severe, than Betaseron did, that I'm reluctant to try anything else. If you're interested, though, in reading about experiences with other meds, check out our Medications and Treatments forum: http://www.msworld.org/forum/forumdi...amp-Treatments

[Fishytrout]

I did well with the Copaxone 20, but my GOSH the Copaxone 40 was wretched for me, so I quit it.