Hi everyone! I was just diagnosed Aug. 2nd and will be starting treatment Septmeber 12th. I have narrowed it down to avonex and Copaxone, yet I'm still unsure which one to go with. Does anyone have any experience or could possibly help me weigh out the pros and cons. Feeling a little overwhelmed.
Thank you in advance for your help!
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Jmredd92
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I started out on avonex and I ended up going to copaxone due to the flu like symptoms of avonex. I have been on copaxone for over 9 years and now the 3 times a week dose for over a year. I believe in it and have had no side effects from it other than the indents from tissue destruction but with the 3 times a week dose it will take a lot longer for the indents to show up for you ๐ and the manufacturer helps me with the cost as my insurance jacked up the price.
I just started the Copaxone. I chose it due to less or even no side effects, no blood work needed to ck liver and kidney function and I have no copay with it since the mfr makes up the difference after ins.
I started Copaxone -the 3 times a week - was doing ok then suddenly I started sleeping 18-22 hours a day! I'm not on it anymore. This amount of sleeping is not a side effect There is something in these drugs that my body does not like this was my 2nd trial if drugs for MS- first was Tecfidera- not a good drug to start with I'm told. I'm back to nothing. So don't know what will be next. The nurses st Shared Solutions are wonderful tho. Good luck for you. Debi
@jmredd92, I was on Avonex 3 years, then Copaxone nearly 3 years. Even though the Copaxone was a daily shot (at that time), I found it easier because there were no flulike symptoms or depression. I had both flu-like symptoms and depression for about a year on Avonex. Taking Tylenol helped considerably, and generally the symptoms lasted only a day or so each time. I stopped Avonex though after I passed out and fell one night a few hours after the shot. I can't say for sure whether the Avonex caused me to black out but it's not something I typically do, and it was unsettling.
With Copaxone my only problems were the site reactions but those got better as time went on (except for the arms, and I was able to stop using the arms and use stomach sites instead)--and some patches of lipoatrophy (dents in the skin that are permanent, and you're advised not to use those places for the shots because it's damaged tissue).
I was also concerned about having an immediate post-injection reaction with Copaxone. They do happen, and most people get through them without medical attention but as an older person who's had SPMS for over 30 years, I didn't want to take that risk any more.
I might change my mind and go back on Copaxone some day but I'm not sure it does anything for SPMS.
When I had to decide between Avonex and Copaxone, I knew someone who had been on Avonex and had no end of trouble with the side effects. I also didn't like that Avonex is injected into muscle while Copaxone is injected just under the surface of the skin. So I decided on Copaxone and had no problems with it for years, apart from some redness at the injection site now and then. I've been taking Tecfidera for some time now, but am considering going back on the Copaxone, now that it's administered three times a week. Good luck with whatever you decide!
I know how overwhelming this all is when you first get your diagnosis of MS & choosing a medicine. Mt experience with Avonex for being on it for ended up giving me a Liver Disease, so I had to change to Copaxone non Interfon. Which I have been on for year's and I'm doing OK with it. Good luck on making the right choice for you .
Sounds just like my auto-immune disease, Primary Biliary Cholangitis. The immune system slowly destroys the biliary bile ducts which over time causes scarring. The scarring causes cirrhosis, therefore the liver cannot filter toxins & it fails, hence a transplant is needed.
I survived liver cancer when I was 19, and the surgery left me with a regenerated liver that's only about 1/2 the size it should be, but it has functioned well and I am doing fine with it (I'm now 63). But because of that, I have to be very careful about the meds I take for MS. I was never given Avonex as a choice, and now I know why. My neuro also would not consider Aubagio when it came out because its biggest listed side effect was liver toxicity, but I understand that this has not been as large a problem as first indicated. I am on Tecfidera and get my liver and kidney functions tested every 6 mos. at least. So far, so good. I wish you all good health and I hope that your liver issues can at least be manages if not cured.
Hi Jmredd92 welcome to the club no one wants to be a part of. Was dx last yr and put on 40mg 3x's a wk of copaxone. I never really had a problem with it and if l had any questions at all, l just had to call Shared Solutions. Even if it was a small question , like are you supposed to take the shot with a fever... the answer is no by the way
Hi! I was on avonex for 2 years. I was miserable for 4-5 days each week, the flu symptoms lasted about 3 days, then I was lethargic for another 2. My hair became straw like so I cut it short. I am very sensitive to pharmaceuticals so maybe that's why I had such a hard time.
Diagnosed in 1999. Started Avonex, flu like symtoms manageable, one Predisone 10mg before, one morning after. In February 2015, started on Plegridy. Walking, Pilates twice a week, Weight Training, Balance Class at local hospital. Can't imagine being on any other meds. I have MS, it doesn't have me!
I also started on Avonex over 15 years ago. Yes, I had flu like symptoms for about 10 months, but eased up alot after that. I give myself the injection before I go to bed, and the symptoms lasted for several hours after I woke up the next morning. I woke up early, took some tylenol, and went back to bed for a few hours. After that, I would get back up for the day with a mild headache. I chose Avonex because I like taking an injection only once a week, had flu symptoms for several months but then eased up and then disappeared, have little reaction at injection site, no major side affects, and it's been several years that I use the pen form. It is extremely easy to inject, and rarely have any signs at injection. My MRIs have been great, in all these years, as well. It seems that it's a try and see what works for you. Obviously, everyone's reactions to meds are different. I've been lucky that my first try has worked for me. We all know how confusing this all is. Just remember you're not alone, and we've all gone through what you are dealing with now too! I don't think the questions ever end.
I have been on Avonex since Avonex came out on the market. So it has been many, many years, I have never had a reaction at any time I am very happy with Avonex and will stick by it.
Copaxone is coming out in generic form. I hope my insurance company will be happier with it, and it should be less expensive. The cost of my extavia is horrible. Also glad to hear copaxone is less immunosuppressive.
Wow, diagnosed less than one month. If I were you, I would go abroad & get HSCT. It will not be approved in the US till 2022 & there will be a line longer than the line at the unemployment office during a recession. I did it in April/May & my ONLY regret is not doing sooner. About your question some work for some & some don't. It's like throwing darts. Some land some don't. I am DMD free since February 2nd.
Israel is a leader in this area. There is a world-renowned MS center near Tel Aviv. I haven't had HSCT, but I understand that it's not easy, especially the after-treatment. Check into it really thoroughly before you do it.
Abroad. I had to leave the ISA & go to Mexico. There are many other facilities to apply to. I applied to 5. Qualified for all but one. Dr. Burt in Northwestern in Chicago, Illinois was the only one to say no because I didn't meet the requirements they were looking for.
Too early for that. Just diagnosed. Not the time to recommend a drug with 30% of developing secondary autoimmunity and higher risk of malignancy. She may do well on first line treatments
Hi jmredd92, I was on Avonex for several years and got to the point that I no longer could give myself an intramuscular injection. I occasionally had flu like symptoms for a couple hours the day after. I eventually switched to Rebif (same med as Avonex only subcutaneous and three times a week). I have not had any relapses since Rebif and no more side effects. I've never tried Copaxone.
I have had MS now for 15 years and chose Copaxone in2007. I like you weighed what to take after six years of no MS symptoms until I had my first relapse and decided maybe one of the 3 DMTs was the right choice for me. Chose Copaxone because least side affects than Avenex and Rebif. I am not averse to shots so giving myself a shot every day wasn't an issue, especially because it was given subQ rather than IM. It's working really well for me, I have had no new lesions so MRIs are great and only issues are the bumps shots leave but I rotate where give shots and bumps resolve quickly. Copaxone now has 3tx week shot which I am on. Two things to note1. Disease modifying drug, DMTs don't cure MS but they can slow it down from progressing which it does for me. I still have issues with heat and fatigue and balance; these issues eventually along with the Cog fog that often comes with MS as you have it longer. 2. I believe that DMTs help and I wish I had a MS neurologist who had been more current on recommending taking one and also told me how important continued fitness and weight control can help tremendously. Copaxone is working well for me and I recommend it. My life continues to be well and full. I had to leave working because of the fatigue and cog fog in 2008 and now have learned a lot more about living well with MS. want to pay it forward and share what I have learned and I hope it helps๐
My son takes Copaxone with no problem, 40mg 3x a week, only side effect is reaction at injection site. He has been taking it for 2 years. I would recommend Copaxone and also Shared Solutions helps you with copay in conjunction with health insurance. They are also great to call and answer questions.
I have been taking Copaxone 40 mg three times a week for two years and it has work no new legions ๐ I call that good. My neurologist liked it because it's proven with few side effects.
To help with skin damage my shots are on the left side one week Monday hip, Wednesday stomach, Friday thigh I avoid the arm it hurts to bad. So far I haven't noticed any damage
When first diagnosed, Avonex and Copaxone were on my neuro's short list of recommendations for me. When I looked at the side effects of both, I determined that those of Copaxone were less offensive than Avonex. Some of the side effects of Avonex could aggravate other medical conditions I have, and I wasn't interested to see if it would or not. Tecfidera was the third medicine on the short list, and that got ruled out for the same reason as Avonex. I didn't care about the administration method, though I am not overly fond of stabbing myself 3X a week. C'est la vie.
It was not specifically a condition per se, but the side effects could impact someone with certain conditions. I don't recall specifics, but both Tecfedera and Avonex had possible side effects that impacted the heart and breathing. I have high blood pressure and cholesterol and I have heart disease in my family. I also have sleep apnea. Since both of those are obviously related to heart and breathing, I ruled out those medicines because of those specific potential side effects. It didn't say that either drug impacted a specific condition, they just had symptoms that could aggravate and cause issues if you have related diseases or issues with you heart or breathing.
I've been on Tecfidera since it was FDA-approved and was never informed about possible pulmonary or cardia effects, just the potential of PML. Fortunately, I don't think that I have suffered any pulmonary or cardia issues. I am scared to death of PML as I am positive for the JC Virus, but I've been feeling OK. Don't know the symptoms for PML and I don't want to know so that I don't start feeling as if I have them.
The decision was an easy one for me. Copaxone is very effective but is entirely manmade of 4 synthetic amino acids (proteins) that do not address inflammation. I also have sensitivities to chemicals and preservatives. My symptoms were clearly inflammatory and Avonex is identical to the interferon beta 1a that we produce in our own bodies to fight inflammation. So I chose the more natural option. Ultimately it was not enough and I graduated to the same med as Avonex in 4.5x the weekly dose with Rebif and really began to improve. Didn't have a relapse on that med for more than 6 years where I was having 2-3 a year on Avonex.
I never used Avonex but I was on Copaxone for over a year after Gilenya had side effects. I can tell you I hated using the Copaxone. I used to inject it at night before bed as I was still working then. It felt as if I was injecting fire ants under my skin. I dreaded every night when I had to inject it. And it did not work for me at all. I'm now on Tecfidera and it seems to be doing its job. Good luck!
Hi. My name is Martha. Was diagnosed in 2007 and they started me on Avonex. It was awful. It's only 1 inj. / wk, but the symptoms are bad for up to 3 days. Flu like symptoms . If you work, thiso is not the med.for you. 2 neurologist'so later, my new Dr. Could not believe that they had me on this because I was working. He immediately started me on Copaxone. You take 3 inj. / week and they are like a small insulin inj. I feel great. and am working part.time. if you ever have any questions my regular. Email is mmrotek3@wi.rr.com. My worse part of this whole journey was when I was told by my regular dr. that I had it. THE FEAR AND ANXIETY WENT THROUGH THE ROOF. Please know you learn what worKshe for you, for instance, I can't get ready as quick in the morning.
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