I've given Copaxone 4 years, and I have to say that it has not allowed any exacerbations. However, I am so needle-weary. I had only three zones to begin with which had enough fat for me to inject. My abdomen and hips have lots of lipoatrophy, so I'm running out of places in which to inject. I think I will speak to my neurologist about moving to something else, but none really have the few side effects that Copaxone does for me.
Has your neurologist allowed/encouraged a switch based mainly on being weary of the needles and lipoatrophy?
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greaterexp
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The only self stabbing, I mean injectable, I have ever been on was avonex and I didn't react well to that. When I spoke to the neurologist I specifically asked for something that didn't require needles. He put me on tecfidera. I also need to do iron infusions every 6 months, I tend to vomit the iron pills within 5-10 minutes, and would even consider doing an MS DMT infusion over self injectables if I have to switch again.
I self-injected from 1999 until 2019 (copaxone, rebif). I had lipoatrophy as well on my stomach and thighs and back of arms. I'm on Ocrevus now (just need a vein - they can't put it in my hand - put it in the "normal" place for a blood draw)
I neglected to share that I also was on Tecfidera and Aubagio during the last few years prior to starting O. T caused my white blood cell count to drop too much. Progression on my MRI caused me to stop Aubagio.
I have lipoatrophy on stomach, legs. And some on my arms. I stop using auto-inject so I can find an area easier. My neurologist wouldn’t let me change to Ocrevus or anything that weakens my immune system when Covid started. I have to talk to her again. So many of the medications cause leukopenia (low white blood count) for me. I have been on Copaxone a very long time.
I had to stop betaseron and avonex because my white blood count became too low. I can’t take Tecfidera because decrease white blood cells. I was going to consider Ocrevus or the injectable B-cell depletion (to avoid infusion). Both have same side effects. I tried Tysabri and during trial my BP lowered to 60/40 and 2nd time (they kept me hydrated) bp varies between 80/40 and 90/40 so I didn’t get raised blood pressure. I have to watch out for the side effects of many of the new medications. I feel frustrated.
With this Covid thing, it really complicates choices of DMTs even more. I have a neuro appointment in January, but I have no idea what she will suggest.
I wasn't on Copaxone for nearly as long as you, but I hated every second of it. I had the higher dosage so that I would only have to inject 3 times a week instead of everyday because I really did not want to have to deal with daily needles and that many injections sites. The inflammation and pain at the injection site were horrible. I was getting awful flu-like symptoms each time I injected, including running a full blown fever and have chills that were almost like full on convulsions for hours. Even on my days "off" from the injections, my body ached terribly and I was miserable. I became incredibly depressed and almost gave up trying to treat my MS entirely.
My Neuro had actually anticipated I'd hate self injecting, so she was very supportive when I wanted to stop. She gave me a few pill options and talked me through all of the risks and side effects. Tecfidera was the standout for me, so that is what I chose and have had no new symptoms or lesions since starting it 3 years ago. I have also heard people on this site speak highly of Ocrevus. Either way, I am not going back to self injectables.
That was no novel, but a great explanation! Thank you. A pill sounds wonderful in terms of mode of administration. I'm thinking through all the side effects of each DMT.
I see her in January and want to be armed with information. It should give me time to wade through all the information!
Hi and yes needle fatigue is very real I was on rebif for almost eight years I definitely had needle fatigue, I switched to Ocrevus, with much apprehension, but have absolutely loved the two infusions per year schedule, and the total lack of exacerbations for two years now, I know that we all react differently to these meds but thought I would share my experience.Robert
Thanks so much. That's great news! Everyone is different, but it's always good to hear real life experiences, rather than just what the drug companies provide.
I was on Copaxone (every day and 3 times a week). I ran out of locations to do it so I talked to my Neuro about tecfidera and have been doing pretty good on it. I take a pill after I eat breakfast in the morning and one after dinner in the evening.
Hi, greaterexp , I used Copaxone for eight years and like you have lots of scar tissue especially on my legs. Now I take Aubagio and Ampyra. No side effects.
I used to be on Copaxone, but several DMT's later I'm on Ocrevus it's working well. They just changed the time of the infusion ( it's shorter now ) talk to your neurologist and good luck
yes, was on Beta originally, changed to Tcfidera when it became available, strongly requested it, got my way, great move all the needles were a bit much
I did it for 17 years and just had one spot that had some atrophy. Saw a MS nurse and no problems afterwards, but cant remember the solution. Then it went to 3x/wk. I was not interested in the possible side effects of other drugs or PLM . My only grief was the price increasing with 15 products on the market. I am off everything now. Not cured and I have same issues as before but still walking. Best wishes for your decision
Even though it's one of the older drugs, if it's working for you then it's working for you, but it's understandable that turning into a human golf ball is probably not your desired look I'm with you on the needle fatigue - I did Rebif for about 10 months and it was horrible, but it was the never ending flu-like side effects that really got to me.It looks like there's a slow release version of Copaxone in the pipeline and possibly not too far away from being released, so if you're happy with Copaxone but the frequency of injecting and the related needle fatigue are getting to you maybe see if you can find out how long it might be before the once-a-month jab becomes available.
I had not heard that! Thank you. Unfortunately, it looks like it's administered IM, which I do not usually do well with. It's still something to consider and ask my neurologist about.
Yes, she thought she was seeing progression, but I am actually doing better than a year ago. I know watching symptoms can be a tricky business, since they can be a roller coaster.
You've been pretty happy with Ocrevus, haven't you?
I stopped for about 3 mos (9 mos b/w doses) due to pandemic concerns and because my symptoms were starting to major progress anyway. Decided to restart (11/13) and noticing feel better.
I did injections for 17 yrs. Avonex for7, Rebif for 3, and Copaxone for 7 yrs. I have been off everything for 2 yrs. I ended up in a wheelchair about midway through and I am still in one. I don't think highly of the early therapies and the more recent ones have possible side effects that scare me to death. At 66, I am just trying to exist the best that I can. My neuro is talking about Ocrevus but it would take a lot of convincing to get me there. Especially now during Covid. My hope is that some day they will be able to repair myelin and nerves. Best of luck to you all. Stay safe.
Thank you for responding with your experience. I'm sorry your MS advanced. I do see many hopeful treatments in the works and hope we see that re-myelinating treatment very soon.
I started with Rebif and while I was turning my thighs to a rhino skin for about 7 years I got an opportunistic infection from my arm stick and had a bad trip to ER. Then I switched to Avonex and I ended up getting another opportunistic infection within a month. That time was staphylococcus invasion, I visited ER twice in a week. Back then no pills were in the market, and Tysabri was just launched with PML in Europe just reported.
I took a drug holiday for a year, then despite all sticking misfortunes started on Tysabri. Though it was once a month I had to go drive over 40 minutes each way to the place to get infusion due to insurance reasons, and that eventually got too much so when my insurance got terminated I dropped that option. I actually did ok. Few years passed and finally pills popped up so I talked to my doc and first tried Gilenya. I loved that pills. I had a lot of energy, no side effect on surface except severe insomnia. No biggie I got so much done in decades throughout day and night. Unfortunately it whacked my liver after four months. I took a couple months to let enzyme level go back normal and got back on Gilenya, just to see if the drug was the cause of liver enzymes go wild. And it was after testing in two weeks. Now I am on Tecfidera for 7 years. Just a whole a lot of side effects if you call them from fatigue neuropathy pain twitch tremor jerking loss of taste blurred vision speech slur fainting diarrhea and constipation irregular sleep loss of taste bladder leaks sudden temporary paralysis migraine everything in between.
But my semi-annual MRI has been no change so at least THAT is working so I am still on it. Personally I am beginning to think maybe it is time to ask about possible option because there are more pills and stabbings are available. I am sharing my experience because even though my skin does not get harder anymore (arms came back but thighs stayed rhino tough) pills are just not quite effective to me when speaking of QOL.
Convenience and “side effects” are measured differently person to person. In my case doctor is absolutely no on self stabbing because of my past history. In your case you are running out of place to jab, and stiff skin pain and everything else that comes with it. But in other words you could try different stuff to see what kind of unpleasant reactions would show. If those are too much go back to Copaxone until you ran out of skin you can tolerate. I am very sorry to hear that your tone is negative. I wish you find some solution to bring your positive energy soon.
Thank you for sharing your experiences. I know we are all so different, but it helps to hear lots of stories. I'm sorry you had so many problems with several DMTs.
Many, many years of, many, many injections. I started with Avonex, the big needles, they switched me to Copaxone in an attempt to improve efficacy, but the tiny everywhere needles left me without spots that weren't red and ready to die to inject. And Rebif, the every other day needles, the last of which I spent years of fever and shakes from till the docs said no more. Copaxone was the only needle injection I really did not like needle wise. Too many injections, not enough areas to inject, and the injection area damage took too long to go away. The others I never had to worry about where. I am so glad I became intolerant to all these meds. Life has been much better since, (except till I went into deep brain fog), though I'm glad I did all those years of DMT's ? Besides whatever altering the drugs provided for M.S., they also kept me healthy always, except for my liver counts, which ran over 2x+ normal, but was told when they got to as much as 200x normal, they would stop me from taking the DMT's. I tracked my SGOT/SGPT for years, maintaining a graph of it forever creeping up with every blood test. The protection from any virus which was a GREAT side effect lasted throughout treatment, and 3 - 4 years after stopping DMT's. Still don't get sick but mildly once a year. I was always sick prior to DMT's, including a few hospital stays as a result. And always I mingled with everyone, including the sickly up till COVID. Now I have to mask up with the best gear I can get my hands on to stay safe, and avoid mask-less interaction completely, except for my wife, who unfortunately works in a petri dish of babies. But, I still make my rounds through the grocery and produce stores almost daily. I thought there were needless alternatives? What is the negative with those. I was told to definitely avoid the infusions, to imagine if I got flue like symptoms with fever and shakes from an injection, what an infusion would be like?
There are pills, like Tecfidera, Mavenclad, Aubagio, etc. I've just been happy to use the Copaxone because it isn't an immunosuppressant like most other DMTs and has so few side effects. Of course, I was a bit afraid of Copaxone before starting it, since the possible side effects list looks like no fun. Other than the lipoatrophy and some local reactions if I accidently injected too deeply, I've had no problems.
I get it. I had a bad reaction to Copaxone and was never so happy when I was told to stop stabbing myself! (Tecfidera was my 1st med and I had a bad reaction to that as well.) I've been on Aubagio which treats me well and I've had NO bad effects from it.
Finally settling on Ocrevus after 10 years of daily Copaxone injections and 2 years of Gilenya pills has been a God send for me. Each year my neuro would ask, "Needle fatigue yet?" He wanted me to switch to Tysabri from the beginning.
An infusion twice a year does sound far better than daily, or in my case, three times a week needle sticks! I'm so happy you're doing well with Ocrevus!
I chose Gilenya for my first DMT even though I hate taking pills. Ocrevus wasn't out yet and my JC virus count excluded a few options. I relapsed about 6 months in so switched to Rebif. It wasn't so much injecting myself (fellow nurse here) but the injection site reactions I hated. I forgot to take Ibuprofen a couple times and had the horrible flu like symptoms but otherwise they weren't a problem. I was kind of happy when my symptoms progressed after a year. I went on an Ocrevus clinical trial in 2016 and have been very happy since. I have only had one UTI and one cold during that time so it hasn't really increased my infection rate.I read Ocrevus is a medium risk DMT from a pandemic point of view. Lemtrada and Mavenclad were the high risk DMTs since they are much more immunosuppressive.
I like only having to think about it twice a year. I don't live far from my neuro office (25 miles) so driving there for the infusion is no big deal.
I am sure your neuro will let you choose the route of administration that you prefer for your next DMT.
I hope you are healing up well after your surgery!
Thank you for your input. Yes, I'm doing better all the time. I still overdo things, which brings on muscle spasms, but that's my own fault! But 'tis Christmas but once a year!
I was on Copaxone for 3 years, then went off it for 10 years. One reason for stopping was a concern about lipoatrophy BUT the skin dents I noticed at that time have vanished. I'm told that sometimes they do vanish after a while. Now I'm back on it--as the generic glatiramer acetate, 3 times a week. What an improvement over the daily shots!
Also, before I was concerned about the "IPIR" (immediate post-injection reaction) some people have. Living alone, I didn't want to be in a situation where I'd suddenly need medical help. Since then I've hooked up with a personal emergency response system--I wear a wristband with a button on it, and supposedly if I were to have the dreaded IPIR, I would still be conscious enough to push that button and summon help. I've heard that that reaction is rare, and when it does happen, it usually doesn't require medical attention.
Actually when I lived in WA state, I received that kind of system (a speakerphone plus a wristband or pendant with a button) at no cost to me because I was on Medicaid. In OR I'm on Medicaid but to receive that type of service would be too expensive through Medicaid--so I'm paying for it myself but at this point it's worth it. I've had a number of scary falls.
I didn't realize you were in OR, too. Yes, I think it's well worth the money for so many reasons. Thank you for sharing your experience with Copaxone. I've always been on the 3 times a week dosing. At my age, I'm not terribly concerned with the cosmetic part of the lipoatrophy, and know it may disappear over time. I'm wondering if I could just take a break from it for a while.
Yes, I realized too that at my age lipoatrophy shouldn't be a concern since it often seems to be a cosmetic concern. But I guess it is a bigger concern because you can run out of injection sites because you're not supposed to inject into those dents.
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I'm with you on the needle fatigue - I did Rebif for about 10 months and it was horrible, but it was the never ending flu-like side effects that really got to me.It looks like there's a slow release version of Copaxone in the pipeline and possibly not too far away from being released, so if you're happy with Copaxone but the frequency of injecting and the related needle fatigue are getting to you maybe see if you can find out how long it might be before the once-a-month jab becomes available. 
Tysabri
This is a day of winning 💪
Knees feel numb but I can feel them ? Also approved for rituxan!
