Is anyone on Copaxone and how are you doing on it?

[wolfmom21fl]

Just wondering.. I asked on Thursday for a medication that does NOT lower my white counts so severely the way Mayzent did. I was told that Aubagio was one.. which I have been on before and it didn't work for me.. I had several relapses and many new lesions on that one.. But i was also told about Copaxone.. I know it's a self injection but if anyone is on this one, how are you doing and what type of side effects, if any, are you having? I just cannot go thru another low white count situation like i did with the Mayzent.. It was a nightmare. never again. I would rather not be on anything at all than to do that again.. way too much

[greaterexp]

I’ve been on Copaxone for about 4 years. I’m a little needle-weary, but so far, I’ve had no relapses while on it. I, too, feel reluctant to go to anything that suppresses my immune system unless I have to. I do have a very little bit of lipoatrophy, but that’s no big deal to me. I only have three zones for injections, so I anticipated a bit of that.

[wolfmom21fl in reply to greaterexp]

Yeah... I am not worried about needles. I don't have a fear of them or anything. I have an anaphalexic allery to wasps and have had to use an epi-pen so i understand what its like to need to self inject something. I also understand the rotation of injection sites after watching my father struggle with type 2 diabetes and the injections he had to do long ago.. My main concern is going to be with the immune system suppression, or lack there-of as is the case. I just have had enough of it. Locked up in my apartment and not being able to go and do anything or be anywhere because of an extremely low immune system is ridiculous and living in fear everyday that someone might knock on the door and if i open the door and they have something to transmit to me, what then? its nuts.. No way to live. Not to mention all the crazy stuff that has happened to me over the last 15 months because of this suppression... from abscessed teeth to cuticle infections.. to pimples inside my nostrils large enough to block the entire nostril, you name it and i have dealt with it these last 15 months.. I am over it.. LOL.. no more.. I want to live a "somewhat" normal existence.. what ever that might be.. I just know it is NOT what I have been doing

[greaterexp in reply to wolfmom21fl]

The concern about infections is something that has kept me on it. It’s not considered to be highly effective, but it seemed to work for me. You’ve sure had a rough time. I hope that if you choose to switch to Copaxone, it is very effective for you. Let us know what you decide.

[falalalala]

I wasn't on it long before some nasty side effects kicked in.

Right after injection, I would fall to the floor, stiffen up and have difficulty catching my breath along with tightness in my chest.

My neuro told me to stop immediately and I've done without ever since.

[wolfmom21fl in reply to falalalala]

OMG! That is horrible.. i know there can be some weird side effects like that with this drug. I am hoping for the best with it. I was drawn to this because of the amino acids too. I have done strictly amino's combinations in the past before I ever even thought about having MS and felt better physically. A couple of them are in this drug.. so I am hoping this is gonna work better for me and at least help me feel better

[falalalala in reply to wolfmom21fl]

That was just my experience with that drug.

Everyone's different but I did meet someone else who experienced the same thing.

Good luck with your search.

[Hidden]

Hello,When I was first diagnosed in 09, I was prescribed Copaxone. Everything seemed to be going alright but in 2013 a lot of legions showed up on my spine. Unfortunately Copaxone stopped working for me, and I have been on Tecfidera ever since with no new lesions. I am grateful for the no new lesions but the ones that are there have been pretty debilitating. I uses a walker around the house and use a wheelchair for appointments when I have to walk a lot. Just like a lot of different diseases, some medications work better for some than others and for me changing to Tecfidera has worked for me and it’s no more injections, just a pill in the morning and another at night.

I hope this helps and I wish you all the very best!! 🙏🏽

Paul

[wolfmom21fl in reply to Hidden]

I am so sorry to hear that. I was on Tecfidera. It was the very first drug I tried. The minor flushing didn't really bother me and I had no other side effects except it didn't work.. i had 2 relapses in 6 months and added 4 lesions on my brain stem while on it. I was terrified.. I switched to Tysabri.. then the JCV titers skyrocketed suddenly after 18months on that and i had to switch again.. Aubagio.. nothing.. like i was taking sugar pills... Then Mayzent which i started right at the beginning of the pandemic last year.. altho i had only one relapse while i was on it, i have had significant progression and A LOT of new lesions.. Most notable in my neck, where i have never had lesions before... ever.. i went from 0 in my neck to 6 within a few months between MRI's. And the hassle with all the OTHER side effects was just way too much.. i hope the Tecfidera continues to work well for you.. Goes to show how different all of our diseases really are..

[Hidden in reply to wolfmom21fl]

Amen to that, every case is different and every response to different medicine is different. I even recently tried Ocrevus for a year, the new IV infusion you take twice a year. It has worked for many people but for me I experienced more brain cloudiness and my left leg felt like it was stuck in the floor. Again this is just what I experienced while on the drug. So I am back on Tecfidera and so far so good, but each day I awake in the morning is a great day!! God knows it can always be worse!!😁

[CrazyCatWom]

As all of it goes with MS each of us are radically different from each other. For me, the last month has been a screaming example of what a life-saver Aubagio has been for me. Sitting outside at 10:00 am in 104 degree F weather waiting for the Lyft driver the app said was 4 minutes away 20 minutes ago and I'm already late for my cardiologist's appointment, all of this after the say before "virtual" last forever appointment with my favorite doctor-- neurologist and NOTHING with the Zoom call on my end is working, and that 4 minute away driver bailed and there are no drivers available close by . . . . AAARRRRRGGGGGG!!!! And nothing short circuited thanks to Aubagio.

[Lady_Winifred]

I was on it for 8 years before my MS started to progress a little on it and it was time to switch. I loved it. No side effects no bloodwork to watch. I don't know how it works on MS that's aggressive or in the progressive stages. But if your Dr says it's something to go with I'd definitely give it a try.

[wolfmom21fl in reply to Lady_Winifred]

IDK either.. It is approved for SPMS tho so I am willing to try it.. at least to give my body a break from the total cluster f*** that was Mayzent... LOL.. excuse my french but it truly was..

[bxrmom]

Copaxone was the first drug I was on when I was diagnosed in 2006. I had a couple relapses when I was on it. When the 3x a week dose came out I switched to that. Approx 4 years ago I switched to Tecfidera as I ran out of places to do injections. A lot of people have had great success on Copaxone for many, many years. Keep us updated on how you do.

[vsn15nml]

I was on it a few years ago for about a month. I developed an allergic reaction with each shot. Other than that, I actually tolerated it really well. I am someone who tends to experience every side effects that is known and two or three that are not, but even with that, my neurologist was shocked I was allergic to Copaxone, since it is know for be super safe. I tried this after developing antibodies against Tysabri and needing a new med, but being scared of Ocrevus.

I hope Copaxone is one that works for you!

[Mssailor]

I was on Copaxone for 15 years. From 2003 until 2018. it worked for me. I stopped when I didnt have any new lesions since 2007. I am 65 and have stopped DMTs for the last 3 years.

[MrStripey in reply to Mssailor]

Mssailor, I'm just your age and wondering about discontinuing mine at this point. In September, I'll have been on it for 21 years. A friend of mine here in town stopped Avonex several years ago and has been doing well without it. How is it going for you without DMTs now, two years later? I hope well.

[ekelks]

Hi. This drug is amazingly free of side effects. My neurologist prescribed it exactly because it doesn't affect your white cell blood count.

I've been on it since 2006, I think. Went from 20 mg daily to eventually 40 mg three times a week.

I use an autoinjector because my hands shake, but if yours don't you can do it without.

Make sure you stick with the original drug not the generic. With the original you will get a nurse specially trained coming to your house teaching you how to do it.

The only thing that might go wrong is accidentally injecting muscle. My doctor told me not to do the arms, as it is hard for me to see what I'm doing.

You rotate injection sites. There is an app to help you keep track of where & when you've injected yourself.

Also depression was a possible side effect years ago with other injectables like betaseron i think it was. Another one my doctors thought would be bad for me.

Not with copaxone, though.

Do it, definitely. Keeps you from getting worse. Verified by MRIs. You'll see. Best of luck.

[Scamp56]

I was on copaxone for 15 years. No issues except I finally was having injection site irritation and it stopped working for me. Highly recommend it as the other DMTs are giving you such bad side effects. The autoject administration is easy also. More like epi pen than giving yourself a shot. And 3 times a week vs daily was a bonus as well.

[LJMC]

I've been on Copaxone since 2003. The aid of an Autojet makes the self-injection easy. In my M.S. Connection Group, there were a couple others who had some issues with Copaxone. One had a side effect of getting rashes. And with one, Copaxone just didn't have any effect as a DMT. However, with me, Copaxone has proven to be very good as a DMT & about the only side effect I have is that occasionally it will itch around the inject area for a few minutes.

[Sandydemop]

I was on Copaxone for eight years. It worked great for maybe six or seven. The only side effect was scarred tissue on the inside where I injected. If I had rotated more I wouldn’t have had that problem. So basically no side effects.

[Sandydemop]

I was on Copaxone for eight years. It worked great for maybe six or seven. The only side effect was scarred tissue on the inside where I injected. If I had rotated more I wouldn’t have had that problem. So basically no side effects.

[Tazmanian]

I was on copaxone for two years then I had to change. I would suggest you talk to your neurologist about what to switch to

[wolfmom21fl in reply to Tazmanian]

Yes, of course, I have been talking to them about this. I was scheduled to see him initially on 4 June but he he tore a hamstring muscle. they pushed the appt to 7 June, then 10 June.. then cancelled it and put me in to see the NP on 1 July. She was the one that gave me the 2 choices of meds that do not lower white counts.. Aubagio, which i have already been on and did not work for me, and Copaxone, which is why i am trying to hear what others experience is with the drug. I stopped taking the Mayzent. I was so overwhelmed and completely depressed and anxiety ridden to the point of madness, (literally) that I honestly could not have taken another dose of that medication. I did not come to the decision lightly. It started with a broken nail, to the quick that bled and the cuticle got infected. took 6 weeks to get that cleared and skin sloughing off and the whole 9 yards.. to an abscess on a broken tooth to which 2,000 mg of antibiotics a day was not helping at all.. no response.. i looked like a half of a chipmunk on the left side ...to this humongous pimple up inside my nostril that got so big it actually blocked off the nostril, WHILE i was ON the anti biotic.. to every other mother herpes outbreaks to the point i cannot eat for days because of the blisters around my mouth. This is just the tip of the ice berg.. not even all of it, but the worst or the worse

[Tazmanian in reply to wolfmom21fl]

Talk to your doctor about ocrevus it's as easy as tysabri but only twice a year. I also liked tysabri but tested positive for pml

[wolfmom21fl in reply to Tazmanian]

I thought Ocrevus was one that also lowered the white counts?

[Tazmanian in reply to wolfmom21fl]

I don't know

[mrsmike9]

I was on that 1st and while I developed nasty reactions on my skin so I stopped, it didn't lower my white blood count. Techfidera, however, knocked my count to the basement! I take Aubagio now and have for quite awhile and fortunately it works for me with no bad reactions.

[wolfmom21fl in reply to mrsmike9]

Aubagio didnt work for me... on 14 mg for over a year and it messed with my liver enzymes. No, it didnt lower my white count tho.. i had relapses on it tho and some progression. actually entered Secondary progressive while i was on Aubagio.. so not sure I want to even consider it again. I was on that one when i started developing lesion on my brain stem too.. scary stuff.. just so different how one person reacts so well to one and someone else it's like taking a baby aspirin.. no effect

[mrsmike9 in reply to wolfmom21fl]

One person's medicine is another person's poison.

[Vinmack]

I have been on Copaxone and now generic form with no problems. I tried Techfidera because of tired of needles and WBC was low. No problem with generic Copaxone.

[Rileymom]

I’m 57 and was diagnosed when I was 51. 3 times a week with the autoject works for me. Skin irritation is the only side effect. I’ve had no new lesions for the past 4 years. However, I was RRMS and now I’m Secondary Progressive. My neurologist doesn’t think it does much for me now (I think it’s because of my age and Secondary Progressive.) She suggested going off of it to see how I do. I want to stay on it for now.

My cousin had been on Copaxone since it came on the market and liked it a lot.

So, if you have RRMS, I think it may be s good choice. It seems like the stronger the medication, the greater the side effect (a bit of an over generalization.)

Good Luck 🍀

[wolfmom21fl in reply to Rileymom]

I have graduated to SPMS but it is also labeled for that. At this point if it doesnt work I think i might be done. I dont know what else to do other than go back on Aubagio, which did not work for me. I guess that would be better than nothing at all but IDK

[kiki51595]

Hi wolfmom21fl ,

Copaxone was the first med I was put on upon diagnosis in 2010. I was on it on for about a year or two, I believe. After some regular visits and MRI's with my neurologist, and obviously some reports of symptoms; she felt that it wasn't doing enough. She then switched me to Beta-Seron, I believe I was on that for year. I had awful injection site reactions to that. The same with the Copaxone, after appointments and MRI's and reports of symptoms, my neurologist told me she felt the Beta wasn't doing anything for me. That's when she put me on Tecfidera. I have been on that for years now. For a long time she felt that we had found my medication. Although, she will sometimes suggest infusion meds to me. She knows infusion meds make me uneasy, and I'm a little scared to have to go that route but will if she feels Tecfidera is no longer benefiting me.

As you know, MS, the symptoms, the course, and how it responds to DMD's is different for each one of us. I do know that with each of those medications, I still had to receive steroid treatments, mostly oral; once or twice IV.

Sorry for the obnoxiously long answer. I hope you can find something helpful in that mess.

Good vibes to you!

😃🤟🤙

[wolfmom21fl in reply to kiki51595]

absolutely.. and no worries for the long answer. I do understand we are all different with the same disease. Wouldn't it be great if the disease worked the same for everyone? at least then we would know exactly what to expect and when. I was on Tysabri for a while and it was magical. Infusions, yes. Side effects, no. It healed some lesions. ZERO relapses and no new lesions while on it. My JCV titers skyrocketed one month and they pulled me off of it immediately because at the same time my white count also spiked to like 24,000. they did an MRI to make sure i was not developing the PML, which I wasn't.. i just had some sort of infection which apparently must have been related to JCV because since then my titers have risen exponentially every time they are checked. I started out with a borderline negative test and it stayed there the whole time i was on Tysabri until that one month when they tripled out of no where.. so they pulled me off immediately.. I wish I was still able to take that medication, infusions and all because it was the best one for me. Sorry for the long response too, but I wanted to let you know about it because really the infusions are not always that bad and it's once a month

[kdali]

Well, you will not have the low white count issue with C! It was my first med. I started it during fertility cycles, and became pregnant 4mo later. I continued for another 8mo after delivery until I had a relapse…which may not have happened sans baby, so I’m not blaming the drug. I did hate it because my skin did not agree with the preservative, mannitol, in the shot. The C users here have shared many tips and tricks for minimizing injection issues and you may be able to find those old posts by searching. There was nothing else to it, except a typical runny nose for the first few months. I did inject poorly one time and experienced 30min of a reaction I can only assume was in the blood stream. I thought it was a better choice of the CRAB drugs because I did not feel like I had the flu after each injection, as I have read was possible with the others, but I have no personal experience to accurately compare those. I’m sorry to hear your white count was miserably low. Was this expected or thought to improve over time? How long since coming off of Mayzent did it take to recover? It’s a newer treatment, and I appreciate you sharing your experience!

[wolfmom21fl in reply to kdali]

I am unsure right now if my white counts etc have recovered yet. I have labs coming up... last labs were done in April and they were were extremely low. They had expected some bounceback of the white counts and lymphocytes after about 6 month but it never happened. They came up a tiny bit and then plummeted even lower than before so IDK.. this was too extreme for me. I cannot imagine what the Mavenclad would have done. That one is supposed to be far worse at this than Mayzent is.. Good grief! You have to go for all sorts of cancer screenings and such before you can even start on Mavenclad,, I was like UM.. everyone in my entire family including my son has died from cancer and you are suggesting a drug that increases my risk of cancer? are you crazy? the only person in my blood related family that died of anything other than cancer was my father and only because he died from a stroke at 53.. so yeah.. no not doing any thing that increases my cancer risk.. I have my Mom, her dad, her brother, her sister, 2 cousins, my son, her uncle and my dad's mother all died from cancer.. nope.. not doing it.. so yeah.. but this Mayzent lowers the white counts really bad.. at least for me it did

[kdali in reply to wolfmom21fl]

I have not looked at the cancer or PML risk of Mavenclad. I got stuck on “white count of 0.3, chemo brain” and mentally threw my hands up. I hope you do well with Copaxone!

[RBrowne]

I was on Aubagio for maybe 2 months. Then a relapse. After that I tried Tecfidera for 3-4 months, and another relapse.

Just my experience though.

Copaxone did work for probably 6 yrs. So I'd go with that

[agate]

falalalala's experience in an earlier post here sounds as if it was an "IPIR"--immediate post-injection reaction. These can happen with Copaxone but it's rare and usually the reaction isn't as severe as falalalala's.

I was on Copaxone for 3 years about 10 years ago, and 6 months ago I went back on it. This time I'm taking the generic form, 40 mg 3 times a week, instead of the daily injections.

I've never had any impossible side effects from Copaxone. Some burning and soreness at the injection site sometimes but it usually goes away in half an hour. I didn't have any odd lab test results and didn't have to have liver function tests. When I was on Avonex for 3 years, I had to have regular liver function tests.

This time around (I was 80 when I resumed Copaxone/glatiramer acetate), I had about 6 months of odd severe pain that was like arthritis pain in my neck, shoulders, and arms. I have no idea why this happens but I do have arthritis anyway, and maybe, on account of my age, the glatiramer temporarily made it act up. It gradually went away, I'm happy to say.

Copaxone is often said to be less effective than the other MS drugs but it also seems to have a better safety profile.

[Neworleanslady]

I was on Copaxone for about 7 or 8 years for the same reason as you, low wbc on other med. i loved the wbc coming back to normal but i ended up getting a new lesion so i switched to ocrevus. I’ve had 1 infusion so far and I’m pretty happy with it. They say it’s immunosupressive but i dont think it’s the same as other meds that lower wbc. It depletes b cells. I’m not sure completely of the workings of it yet but my skin/atrophy areas were starting to disfigure so I’m glad to stop the injections

[wolfmom21fl in reply to Neworleanslady]

B cells are part of the overall white blood cell counts and Ocrevus does put you at higher risk for infection of respiratory infections.. upper and lower.. so that's an out for me.. I have COPD and have been hospitalized numerous times pneumonia over the past several years. The most recent was last year. So likely not a good idea. also listed is exacerbation of herpes infections.. Which is something i dealt with on Mayzent..

[Neworleanslady in reply to wolfmom21fl]

Wow. Well good luck and best wishes to you on finding which med works best for you. Prayers to you

[Ellmom]

Copaxone was the first dmd that I was on 22 years ago. Back then you had to mix the medication up in the needle then inject, there was no autoject & I shot up everyday.I was on it successfully for several years until my neuro at the time wanted to switch me to the new dmd Rebif that had just come out (I think that she was getting a kickback from the drug rep). I had a terrible reaction and switched to the new neuro in the group