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  • AmyHoover
    Hello- 
    I don’t know if anyone will see this or respond to it, I’m unsure of how this site works. 
    My name is Amy, I was diagnosed with MS two years ago but am only now able to start treatment related to multiple pregnancies.
    My doctor has prescribed low dose Copaxone injections 3x/week. He said this was a gentle medication for early stages of MS and preventing the development of symptoms. I have been complying with the injections for about a month now and am very close to just stopping them. My injection sites get large, inflamed, and very painful- staying this way for about a week. I understand that one of the side effects is a small lump at the site, however these “lumps” are about the size of a kiwi. 
    I was curious if anyone has positive experiences with oral medications. I have been researching them a bit but want honest experiences with them. If anyone would be willing to share their knowledge I would appreciate it.
    Thank you so much!
     
  • thughes73
    Amy i just did same thing diagnosed in june was on copaxone and did the same to me autojet and manuel i was left with lumps, itching forb2 weeks ateast was told i had a skin. Irritation and just recently switched to rebif.  This gives you side effects of flu like symptoms but the injection site is perfect like i never even injected a needle. I work for neurologist and even still its all trial and error...all depends on the person
    wish you all the best 
    tammy
    always here to chat
  • AmyHoover
    Thank you for responding and for the encouraging words- I guess I am more interested in pursuing oral medications than doing injections. Have you ever been on any oral MS meds and forgone the injections? 
  • merryb53
    ok Amy I found your discussion point again. I was on Copaxone twice.  Hang in there with everything in general.  The Copaxone has injection site issues with swelling, lump, itching.  I would get a Copaxone nure on the phone.  We can talk later about everything else. I am in PA too.

    Yep, God has you in His Hands.
  • AmyHoover
    Thank you for your reply! I guess it would be a good idea to get in touch with my nurse before just giving up- I am just so discouraged, just after 1 month!! These injections are awful, I can understand why the compliance rate is so low! 
  • Chrissyny
    AMY Amy Amy   Minor detour. πŸ˜”
       Perhaps you could contact Copane-request a retraining-nurse.  The auto ject is adjustable so it doesn’t go too deep or too shallow. This is a minor roadblock ☺️  You also don’t want to dread needles.  
    Just like preparing babies bottles or changing diapers, your going to do this with your eyes closed. ❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊 πŸ‘ŒπŸ‘ŒπŸ‘Œ
    i feel confident of why your doctor prescribes copaxone, but it’s not my decisionβœŒπŸΌπŸ˜‰
    little lady you’ll get the right people to help you with this❀️😊✌🏼❀️😊✌🏼
    Good luck and all the best to your family πŸ‘Ά πŸ‘ΆπŸ‘ΆπŸ‘ΆπŸ‘Ά
         ❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊
  • AmyHoover
    Thank you so much for your encouraging words! Hopefully I will get all of this straightened out. It never hurts to contact a nurse again! 
  • lovereign
    Hello Amy. I have been taking Aubagio since 12/20/17. It is one of the 3 oral DMTs. The other two can put you at risk for PML, Aubagio does not. I also did my research on all the DMTs before making my choice. I am not afraid of needles but didn't want to be sticking needles in myself several times a week. The infusion DMTs are quite extreme in my opinion, and those also put you at risk for PML, except for one. I'm happy with my choice. Taking one small blue-coated pill a day (14 mg) is easy. Almost makes me forget I have MS, because it takes a second and I move on with my day. The only side effect I've experienced is hair loss during the first six months of treatment. It wasn't a lot, just more than usual. My hair no longer falls off like that. You can take it on an empty stomach or with food; it doesn't affect your stomach negatively either way. You don't have to go to the doctor, hospital, or pharmacy to get it, it's delivered to your door via FedEx or USPS, depending on where you live. My insurance (Medicaid) would not cover it. They wanted me to try interferons first. My neurologist's office contacted Aubagio and got me set up on their Patient Assistance Program. Depending on how much income you earn, you will only pay a fraction of what it costs. In my case, since I can't work and have no income, Aubagio has been providing my medication monthly, at no cost...FREE. I feel blessed. I found it online on Walgreens' website and it costs just under $5,000 for a pack of 28 pills. All the DMTs are ridiculously expensive though. I only have to recertify once a year by sending Aubagio another application for the PAP, which they mail to you in addition to a return envelope. The application for the program is simple and mostly is to find out if your income has changed. Aubagio will also provide you your own MS One to One nurse, which is available to answer any questions you may have about Aubagio itself, MS, insurance, or even just to listen to you if you want to vocalize your frustrations, fears, etc. about being diagnosed with MS. Aubagio was my first choice and DMT, I don't see myself ever changing it to another. I hope you find what works for you. πŸ™‚
  • AmyHoover

    Thank you so much for your reply- that information was VERY helpful. I will definitely begin more research about Aubagio. I don’t have a follow up appt with my MS specialist until April so I will continue the injections until then (much to my dismay). One thing I don’t want to do is become a burden to my family (none of us do) in the means of financially. I liked Copaxone is the fact that (after many conversations with my insurance) I only have to pay a small copay for this med. I realize my health is the most important thing but holy moly $5,000 for a months supply?!? I’m in the wrong career field, I think I need to be working in pharmaceuticals! πŸ˜‰ 

    Thank you so much for your reply! 

  • Jtrevino83
    Hello Amy. I was diagnosed 16 years ago back in 2002 and have been taking Copaxone since 2003. Is a very well tolerated medicine with a long history behind it and for me it has really worked, I am now taking the 40mg three times a week dosage as well and that has been a blessing, before that I injected every single day, I did that for 12 years or so. 

    When I got started with this medicne I remember having flush symptoms like fast breathing and turning red but they where fast to go away and did not happen very often and as I continued with the treatment I never had them again.

    As for your sikin reaction I do somtimes experience a lump myself but not as big as a kiwi. I think it might be something to do with the needle depth youre using, see I use the Autoject device for my injections, it is a very handy tool that makes giving your injections a lot easier and you can get it free from the shared soutions website, I usually set the device to the number 6 depth and it works great. You have to remember that Copaxone is an inection that is just below the skin so if you go in too much you might be going into the muscle and that might be what is making the lump. 

    Another thing is that before I inject with my free hand I pinch about an inch of skin before I inject and then let go gradually add the injection starts to go down, that makes it easier for the fluid get into your skin and by doing that I notice that I don't get barely a lump anymore.

    One thing you have to remember is that this medicine kind of eats away the fat around the muscle on the injection site over time that is why you sould rotate your injection site every day as well.

    I like this drug because it has very little side effects and it has a long history of safety but at the end we're all different and it really comes down to what it works for you. I hope this advice helps you and I wish you the best.
     
  • AmyHoover

    Thank you for taking time to reply to my message! I cannot imagine taking injections every day for 12 years! You are a warrior! After doing these injections myself, I definitely have more compassion for insulin-dependent diabetics! (I am an RN in a hospital setting so I am giving patients insulin all the time). 

    I am using the auto-inject device and either have it set to 4 or 6 depending on whether I am doing the back of my arm or belly/thighs. Like I said, I just had 2 babies so I have a bit more fluff in some areas still. I am not experiencing the cardiac flutters or the overall flushing. I just get a huge, very painful lump for about 2 weeks. But for example, I just injected Monday into my left thigh, using a 6 on the autoinjector. This is the first time that the lump lasted less than 2 days however the entire front of my thigh is red and itching. Is THAT the flush reaction I am supposed to be experiencing?

    The medical professionals, God bless them, educated me on all of this but they never experienced any of it- so they told me to expect flushing but they can’t say where it is or how long it should last. This entire process has changed the way I interact with my patients because it’s opened up my eyes to what patients actually go through on an emotional level and how to have more knowledge based impact. I’ve never been sick a day in my life let alone take weekly injections! 

  • gilly
    Hi Amy
    I'm new on here, but just wanted to reply to your message regarding copaxone and tell you what helped me when I was on copaxone. I suggest definetly getting in contact with your MS nurses regarding the welts and have a refresher on how to inject. You don't say if you are using the autoinject or manually injecting, but I found it much easier to manually inject. With the welts you are experiencing try using a cold pack at the injection site for 10 minutes after your injection and if you are experiencing itchness at the site take an antihistamine (if you are ok with them). Try not to rush the injection either and be calm. I remember the stress at first of injecting and I definetly had more lumps if I was in a hurry to get it done. I never had kiwi size lumps so ask your MS nurse about that. Rotation of your injections are very important too, you can get a site reminder from the internet if you find yourself forgetting where you last injected.
    I have now been on Tecfidera for 3 years and after the initial side effects, I am fine. Its been a good DMD for me.
    good luck πŸ˜ƒπŸ’
  • AmyHoover

    Hello Gilly-

    Thanks for taking time to reply to my post. I have called my MS RN twice and left messages- waiting for a reply as of now. πŸ˜• 

    I usually use the autoinject device, set at either 4 or 6 depending on where I am injecting. I manually injected once into my abdomen and it was the worst one yet! So not doing that again!! Haha! I do usually put an ice pack to the injection site for a little while and that seems to help. My latest injection was on Monday- the lump is already gone praise God! But the entire front of my thigh is red and itches like a madman. I was curious if I could use an antihistamine cream on it because I feel that would definitely help! 

    If you don’t mind me asking, can you tell me more about your experiences with Tecfidera? What were the initial side effects? Are you taking copaxone injections and Tecfidera simultaneously?

    Thanks again for your response! 

  • gilly

    My response is after your response to me........I'm having difficult navigating this site

    Hello Gilly-

    Thanks for taking time to reply to my post. I have called my MS RN twice and left messages- waiting for a reply as of now. πŸ˜• 

    I usually use the autoinject device, set at either 4 or 6 depending on where I am injecting. I manually injected once into my abdomen and it was the worst one yet! So not doing that again!! Haha! I do usually put an ice pack to the injection site for a little while and that seems to help. My latest injection was on Monday- the lump is already gone praise God! But the entire front of my thigh is red and itches like a madman. I was curious if I could use an antihistamine cream on it because I feel that would definitely help! 

    If you don’t mind me asking, can you tell me more about your experiences with Tecfidera? What were the initial side effects? Are you taking copaxone injections and Tecfidera simultaneously?

    Thanks again for your response! 

    πŸ˜ƒπŸ˜ƒπŸ˜ƒ

    Sorry, didn't know how to reply from your response, hope this works.

    Antihistamine cream would probably help, Antihistamine pill helped for me. The butt area was my best area for injecting.  I used the daily injections and I didn't have much issues with manually injecting, I couldn't get my head around the auto inject. I'm glad your latest injection had less issues.
    I am not taking Copaxone and Tecfidera together, I don't think you can.


    My experience with Tecfidera..........for the first 3 months, I didn't have a great experience. I had flushes daily, which didn't bother me really, I took an antihistamine pill and aspirin and soon disappeared. As for stomach issues, I could hardly leave the house......this was even with eating the correct foods like peanut butter, eggs or almonds (although I have residual damage to my bowels from a relapse, so double wammy). Anything with a fat content. I resorted to using adult diapers, needs must sometimes. I think I've been on Tecfidera for 3 years, and I'm relieved that I persevered with the side effects. Rarely do I get flushing or Tecfidera related bowel issues. My MRIs have been without new lesions, and the lesions I had, have apparently disappeared. People have told me my walking is better, and I feel better than I have in a long time, my dx was 2012. Fatigue is still an issue.

    Hope this helps and you have received my response, this site is a bIt confusing.

    Gilly

  • golgotha
    I was on copaxone for about a year. I had the "normal" range of side effects (though my swelling was smaller than a kiwi). Learning more about DMTs I wish I had never wasted my time on copaxone, simply because as an MS medicine/DMT it is not that effective.

    First, I'm a MS patient for 30+ years and not a doctor. Remember that.

    But his idea of "the early stages of MS" and recommending copaxone is wrong-headed IMO. He's using what is called the "escalation model" of treating MS. In short, that model is to start with a cheap medicine with few side effects (often copaxone) and when you get more lesions (each lesion is literal brain damage) then escalate to a better, more expensive DMT. For-profit insurance corporations love that model, but for us patients is it the best?

    What I the patient want is to avoid lesions/brain damage. I want the most effective medicine with few side effects -- and I don't care one bit about the health insurance company's profits. Here's a video of one MS specialist neurologist in Ohio explaining his view of the escalation model.

    There are a range of various drugs that can be used as DMTs -- but there's really not that many.

    Since knowledge is power, some info: Here is a PDF file from the Swedish Neuroscience Institute in Seattle which is a nice summary of DMTs. That file breaks the DMTs down into 3 categories: pills, injections, and infusions.

    This video from a presentation which was given at the Rocky Mtn MS Center focusing on Ocrevus. It has a table at about this point which summarizes some of the popular DMT options and their effectiveness, impact on brain atrophy, and side effect ratings. In that summary table you'll see ratings of how ineffective copaxone (glatiramer acetate) is compared to other DMTs according to that MS center.

    And that same MS specialist doctor/neurologist in Ohio mentioned above (he's a mainstream MS doctor who likes making YouTube videos, not some sort of oddball) has many videos on other MS DMTs and MS topics; I highly recommend them.