Starting Copaxone Monday. Any advice?

[greaterexp]

The Shared Solutions nurse is coming Monday to get me started on the 40 mg of Copaxone. I'm not at all nervous about injections, but not excited about potential side effects. I've never taken anything remotely like this. If anyone has advice, I'd love to hear it.

[jimeka]

Morning Erin, what type of ms do you have and what does copaxone do for ms? There seems to be a few of you on it so I am just interested because with me having PPMS I have not been offered anything. Is there an age guideline as to who can have it? I hope that itworks for you, in what ever way it is supposed to, blessings Jimeka

[greaterexp in reply to jimeka]

jimeka, I have RRMS, so the Copaxone is supposed to help reduce the number of relapses, which may help delay disability. I know there are finally drugs on the horizon to treat PPMS, and I hope for your sake that it is approved soon and you will have access to it if you want to try it. The name escapes me at the moment, but I want to say it's Ocrevus.

[dmaskal1 in reply to greaterexp]

Ocrelizumab is the drug to treat PPMS that is being expedited by the FDA, see nationalmssociety.org/About.... Since it binds to all the B cells in your immune system I imagine it may make one more susceptible to other infectious diseases. But the risk may outlay the benefit.

[erash]

greaterexp i was on copaxone early after my diagnosis. I recall

pre-icing and rotating the injection sites as important.

It at least didn't give me the flu-like symptoms of beta sermon (stopped due to low platelets)

[TracyBelle in reply to erash]

The nurse will tell you to apply heat and then ice. . . BUT I have taken it since 2000 and would not dare inject without ICING FIRST with frozen peas placed in a snack size zip lock bag. The peas melt to your body and I use a soft belt from on old trench coat to attach them and leave them on while I get my shot stuff together. (I then put them back in the freezer for use again) After I (my husband) finish the injection I immediately place a nonstick pad (cut up into tiny squares) on the injection site to absorb any excess medicine and watch a favorite show on the DVR. The site (for ME) is way to sensitive to put anything on after and my skin is still numb from the pre injection icing.

I only inject in the evening 2 or so hours before bed. That way I am ok even if I have a reaction AND the shot is not painful when you wake up the next day.

It will still hurt but don't give up!

The interferon treatment made me sicker each time instead of better and all shots have injection site pain also.

[erash in reply to TracyBelle]

Ditto all that TracyBelle said.

[greaterexp in reply to erash]

erash , thank you, and to everyone! I've given myself 3 injections so far and have done pretty well. I've been doing them first thing in the morning to give myself a cushion of time to still get one in before the day is gone. For me, it seems to help doing it in the morning because I can get busy right away and distract myself from the discomfort. The first one I did with the nurse watching was actually the worst; my upper arm ached for about 3 hours afterward. I suspect she suggested a depth that didn't fit my build, and maybe I hit muscle.

I won't be able to use my thighs at all, which takes out about 24 additional rotation spots, but I can't pinch up even a 1/4 inch of fat there. I've gained 5 pounds with this relapse, since I had to be much less active, and all the fat went to my abdomen. Unfortunately, I have numerous stretch marks there, and have to avoid those. I'll just do the best I can with what I have.

[greaterexp in reply to TracyBelle]

TracyBelle ,

Thanks for the suggestions and encouragement. I lived through the first four injections!

[Karen-x]

greaterexp I have also been on copaxone for about 15 months. As far as side effects, copaxone really has one of the fewest side effects. Its the ONLY one that won't affect your liver. And its not an immuno-suppresent so there isn't an increased risk of other bugs.

The worst part, for me, is the welting under the skin at the injection. It can be a bit sore and last a day or two. Sometimes I don't really have one and other times I do. I don't inject on my hips, too painful for me. And my favorite area is stomach.

Any other specific worries?

[greaterexp in reply to Karen-x]

No other real worries at the moment, except I'm not thrilled about the "body sculpting" that can happen in the subq tissue. Besides making sure I inject it correctly and rotate sites, is there any other way to prevent that from happening?

[Karen-x in reply to greaterexp]

Not that I know of. And it doesn't happen to everyone. I have not had any subq tissue damage yet. A lady I know has been using copaxone for 11 years, she has some on her thighs and stomach. She says she doesn't care, she is past the bikini stage anyway, hahaha, me too! And she says since she is still walking unaided that's all that matters to her. She inspired me.

[Jesmcd2 CommunityAmbassador]

Welcome to the Copaxon club 😕 l take the auto inject 3xs a wk. Besides the itching which l found that Neosporin works great!, And a bit of redness, puffiness calmed down with an ice pack.☺Also l take mine in the morning, together it out of the way.😁

Let us know how it goes greaterexp

🌠

[greaterexp]

Thank you to all of you who responded with great suggestions. What a blessing you are!

[purpletustin]

Hi, I was on Copaxone for 7 years and did very well. I had remitting MS, but have progressed to Secondary Progressive. Not so sure of SP, will wait to see. I then went on Tysabri and hated it.

Some hints I offer: Rotate the location of your shots. I followed the charts in the Copaxone book. Found the book to be so helpful.

I removed my shot from refrigerator at least 20 minutes before injecting. After awhile, I found a few areas that I found uncomfortable, so I never used those areas again. i.e. top of thigh (ugh).

When I did my arms, I used a rolled up towel under the arm that I positioned so it would make the 'meaty' part of the arm easily accessible. I used a warm compress, provided by Shared Solutions on the area for a minute or so prior to shot. Ck with nurse to be sure warm first and cold post shot. My brain is fuzzy on this. Most important, to counteract skin site reactions I purchased liquid spray benadryl or it's generic form from WalMart and sprayed area immediately after shot. Rarely did I have a reaction. Think I paid about 4.00 for the spray on WalMart website and lasted about 4 months. I hope you do well on Copaxone and don't let the thought of 3 shots a week throw you for a loop. Never had any type of reaction other than a few skin site rashes and solved that with the Benadryl type spray.

[Blcasey279]

Hi greaterexp@

I've been taking the daily 20mg injections since 2011 when I was first diagnosed. The only issue I have with the shots is that on occasion they welt up and are sore for about 10 minutes after. Once in a while I might get a drop of blood. I've decided it has to do with how deep the needle goes in. I've also not had any new lesions since I started it. I tried the 3x a week shots but I had a hard time keeping track of when I took it last so I went back to the daily ones.

I hope this is helpful. It can be a bit scary at first but it's really not a big deal to me any more.

Best of luck, blcasey279 (Brenda)

[Jesmcd2 CommunityAmbassador in reply to Blcasey279]

I hear that @bicasey279 it's been almost 2yrs and l will STILL forget without the Copaxon app! I love the alarm on it. My Neuro never even suggested the 7day tho. I probably would have passed out.😕😅

Do you use the auto inject at all? And have you tried the benadryl or Neosporin trick?☺

Jes🌠

[marktwinter]

I remember making a big ordeal when I first started Copaxone. Heat before injection followed by ice after injection.

I do better not using the autoinjecter because I do better controlling the depth and I know quickly if I am hitting a blood vessel.

I skip my arms, not enough cushion.

I have been on both doses. 3x was easier on my body (skin reactions).

Recently, I had to switch to the generic,Glatopa due to health insurance and I am now back to daily shots again. It works for me. Minimal side effects. I will put up with a bee sting if it prevents more lesions. 10 years and counting. Good Luck!

[BigMar7]

I have been on Copaxone for 12 years, injecting myself daily cause my insurance won't pay for the 3x a week one. I have kept a log with the Copaxone planner, read all the instructions in the beginning and every so often since. The best advise I can give you is to make it part of your daily routine. Mine is in the morning when I wash up and get dressed. You can decide what days you will do it. Mark it down in the log or whatever you chose to use. I also have had some of the skin reactions mentioned but after 12 years of injection it's pretty minor. The auto injector is super easy to use. You will do great!

[greaterexp in reply to BigMar7]

Thank you for the suggestions. The autoinject device was supposed to come yesterday, but I may start without worrying about it. I feel comfortable doing the injections, but thought the autoinject might make it easier in areas that are a little less accessible.

[greaterexp]

Another great idea! Thank you all. I talked with a lady who takes the daily dosage. She puts one syringe out every night on the kitchen counter both to warm up and as a reminder first thing in the morning.

[Jbahnan]

Hello greaterexp, I was on copaxone from 2010-2014 really did not do anything for me, no side effects tho. GOOD LUCK!

[greaterexp in reply to Jbahnan]

Thank you for the well wishes. I've heard from both sides of the treatment. I'm glad so many have had good results, but I'm sorry you did not have good luck with it. Are you taking anything now? I hope you have found something that gives you relief.

[Jbahnan in reply to greaterexp]

Yes I take AMPYRA it's the best medication I ever took it really helps me. GOOD LUCK in the future!

[Karen-x]

greaterexp how did it go yesterday?

[greaterexp in reply to Karen-x]

Karen-x , I had to cancel the nurse visit because the aotoinject device still hasn't arrived. Even though I was nurse, I want to take advantage of every learning opportunity. I didn't want to ask the nurse to make two visits, and a few days won't make much difference. Besides, it has given me more time to learn more great tips from you all.

You are so thoughtful to ask! Thank you!

[Karen-x in reply to greaterexp]

That is different. When my nurse came she brought everything w her, all except the injections which had arrived before she scheduled. Well, let us know how it goes.