Of the four older disease-modifying therapies, aka the CRABs (Copaxone, Rebif, Avonex and Betaseron), the last three are in the class of drugs known as interferon beta. Interferon beta-based medications work very well for some people, keeping relapses at bay and (presumably) delaying disability.
However, the interferons have disadvantages:
- Flu-like side effects
- Rare side effect of depression
- Possible liver involvement and toxicity in some peopel
- Neutralizing antibodies develop in some people, rendering the interferon-based medication less effective
- Researchers recently discovered that 1/3 of people with MS (with higher levels of a certain immune component) may actually do WORSE on interferons than if they took nothing (read more: Interferons May NOT Be Good for Some People with MS)
One or more of the above factors may mean that certain people either cannot tolerate the interferons or have disease progression and relapses while on one of these drugs, which in many cases means they should switch to a non-interferon based medication.
Although many people think that failing to respond to one of the interferons means that they need to go straight to Tysabri, there is still one drug in the older group to consider - Copaxone.
Copaxone (glatiramer acetate) is a completely different class of drug, with completely different mechanisms of action and different side effect profiles.
A study conducted in Spain among 60 people with relapsing-remitting MS who were switching from an interferon showed the following results:
- 21 patients were switching because the interferon was not effective in preventing relapses. These patients went from having an average of 1.39 relapses per year on the interferon to .52 relapses per year on the Copaxone. [Note: I found this interesting, as many experts think that Copaxone does not reach full effectiveness for at least 9 months. Therefore, it would be expected that the relapse rate in subsequent years would be even lower.]
- 39 patients discontinued interferons because of intolerable side effects and switched to Copaxone. Among these patients, the relapse rate was the same on interferons (0.35 relapses per year) and Copaxone (0.36 relapses per year).
While Copaxone certainly does have some drawbacks (daily injections and side effects like lipoatrophy and immediate post-injection reaction), it is good to know that there is still an option for people not responding to the interferon-based meds who do not feel ready to switch to Tysabri for many possible reasons.
BOTTOM LINE: I guess I thought most people knew that Copaxone was worth a shot if they failed to respond to an interferon-based med or could not tolerate the side effects. However, it seems like I get many e-mails from people whose docs switch them around on the interferons, then give up and put them on Tysabri. Of course, some people may want to head to Tysabri right away upon a disagreeable experience with an interferon or in the case of rapidly-progressing MS. Needless to say, this is a decision to be made with your neurologist after weighing all the factors.
What about you? Have you been on an interferon and switched to Copaxone? Have you been on Copaxone and switched to an interferon? What about those of you who have switched off of a CRAB to Tysabri? Please share any experiences in the comment section to help the rest of us make sense of all of this.
Source: Oreja-Guevara C, et al "Characteristics of switching from interferon beta to glatiramer acetate in non respondent relapsing remitting multiple sclerosis" AAN 2010; Abstract P06.162.
Further reading:
I am curious as to who wants to go off an injectable in favor of oral drugs
I switched from Avonex to Copaxone 8 months ago. Avonex basically took my weekends away from me due to the flu-like symptoms that had me sick in bed. With Copaxone I’ve had only one relapse…but it take 9-12 months for it to really work and the daily injection is just a part of night routine. I only get a small mosquito bite from it and it is gone within a day. I’ll take that over the getting the flu every week. My mom has MS too and she is on Rebif and suffers three times a week from the side effects. No thanks…I’ll stick to Copaxone.
I took Avonex for nine months approximately ten years ago. I stopped the medication after what I felt was a reasonable amount of time to see if the side effects would diminish, but they never did. Flu-like symptoms for three days out of every week kept me flat on my back in bed. My quality of life was greatly affected and I made the decision that life with MS couldn’t be much worse than life with Avonex. A year ago, my relapsing/remitting MS started to become more bothersome and my neurologist did quite a bit of talking about Tysabri but I wasn’t doing much listening. The possible side effects of that medication are just not worth the risk (for me) so I opted for Copaxone. Thus far, I have experienced fewer MS symptoms, although the ones that I do have seem to be more bothersome. All in all, I would have to say that it appears that the Copaxone may be helping. I do have a reaction at the injection site – and two days following the injection, that site is extremely itchy – just about drives me nuts! But a small price to pay if this medication is doing its job
I’ve been on Copaxone for about 8 years now,allthough over the past 2 years i’ve been skipping days using it,sometimes while away from home i’ve skipped injections for up to 2 weeks.Not because of any side effects,i’ve had none,but because i believe i no longer have MS.I haven’t had an attack since i was diagnosed 8 years ago.As soon as i was diagnosed with MS i changed my diet to one of low fat.The past year i’ve cut meat from my diet and eat 80% raw foods.I’m working towards 100% raw food.I also have a green smoothie every day,thats a juice made in a juicer using green vege’s and apples,i throw in some carrot juice and a teaspoon of spirulina powder as well.I’m a 52 year old male and feel great.
This summer I will have been on the medication Copaxone for two years, but just recently have also had terrible back pain. I believe I read from the literature of side effects that came with the Copaxone that back pain could possibly be one. Has anyone else taking Copaxone ever experienced this side effect? Thanks for your time…
I was on Avonex for 2 1/2 years-the flu symptoms never went away and relapses increased. Then I changed to copaxone which did not reduce relapses. Now I’m on tysabri and have been relapse free for 3 years.
My daughter was on Betaseron for 6 months, had one relapse, but quit because she could not stand the constant flu-like symptoms. She switched to Copaxone for 2 1/2 years, had regular relapses and still has “divots” in her thighs.
She has been relapse free for the past year on Tysabri, but her doctors want her to take a break from Tysabri for several months and return to one of the CRAB drugs. This really seems like a step backwards.
The doctors don’t see the oral drugs as an option…yet.
I have been on Copaxone for 2 1/2 years now and love it. I have no more vertigo and that was my nightmare. Copaxone is working for me and I will gladly put up with injection site pain, bruising, lumps, itching, etc.
I took Avonex for 7 years, then switched to Copaxone. I hated Avonex. I was incredibly depressed or felt horrible all the time. I disliked Copaxone as well for other reasons like shot site reactions and just could not stand the injection process anymore. No fear of needles, just felt more sick on these meds than the MS itself. I have been therapy free for a year, no progression and feel excellent. Meds don’t work because if you’re going to progress, you will progress with or without the meds. A lot is luck. I happen to be one of the lucky ones.
I went off Avonex 5 years ago when I had a serious eye problem. While off the drug I noticed that my depression for which I had been treated with heavy doses of antidepressants and psychiatry was almost immediately relieved. It was a blessing in disguise as I am now only on mild antidepressants while on Copaxone. I am very careful with injections and have almost no dimpling and mild discoloration from the shots. No side-effects noticable and no relapses. I still know I have MS but so far so good. I am now 10 years post diagnosis but have probably had the disease for 30 years.
I was on Avonex for 6 months and had one really big exacerbation/flare and also noticed other small problems with coordination. I thought I was better off without any medication. My doctor switched me to Copaxone. I’ve been on it for >12 years and I have done quite well.
I used Avonex for 5 years and had only one relapse but my doctor wanted to put me on Tysabri due to changes on my MRI. I was scared and decided to quit drugs all together for almost 2 years. Then I wanted to check on the MRI and had one done, it showed changes (multiple mini lesions on my brain and spinal cord). I decided at that point it was time to try medicine again. The shots did not interest me anymore so I’ve been on Tysabri now for 13 months. I haven’t had any symptoms and feel great, but I felt great during the two year break from drugs as well… I CANNOT WAIT to try an ORAL medicine. I’m still so scared of PML and I want to start a family soon so I’ll have to go off of meds for a while. Maybe once I’ve had my kids the ORAL will be ready!
I was on Avonex six months. I had flu-like symptoms plus I had seizures and dysphasia (difficulty talking) after each injection.
I was put on Copaxone after that. I was on Copaxone 9 months and I had exacerbations every 4-6 weeks. My lesion load on the MRI went from 10 lesions to more than 60 in that 15-month period of time. I was progressing at a rapid rate, so much that I had to leave my job permanently.
I was then put on Tysabri. To its credit, it did stop the progression of my disease. I was on that medication for 20 months. During that time I had several upper resiratory infections, largyngitis, and even pneumonia. My neourlogist and I decided ot was time for a break, so I went off Tysabri last May. She and my husband were both worried about the chances of me getting PML.
About two weeks before I stopped the last infusion I started on low dose naltrexone (LDN). My neurologist thought it would give me more energy, but didn’t think it would stop the progression of my disease. She wanted to put me back on Copaxone and do pulse steroids three months after I stopped Ty. After getting a second opinion from another well-known and respected neurologist in the area, he agreed with me. I didn’t need to go back on any of the CRAB drugs. I’m happy to say I’ve been on LDN almost a year and I haven’t had any exacerbations! My MRI results in November verified those findings.
My next agenda is talking to my doctor next week about 4-AP. There’s a study out that shows this medication not only helps with walking, but also helps with vertigo (something I severely suffer from). 4-AP is the same drug as Amprya. The only difference is Amprya is taken twice a day in a slow release pill. 4-AP is short-acting and needs to be taken three times a day. Oh, and the biggest difference is cost: Amprya is $1300/month vs. 4-AP $30/month.
I hope my experience helps others out there with MS. If I could do it all over again I would have started on LDN upon diagnosis. Maybe had I done this, I would still be working at a job I truly loved.
I tried various doses of Avonex while the flu kept me on the couch for about 6 months. 2 months into the treatment I lost range of motion in my hips and the two Neurologists and their nurses were unable to tell me for sure if it was an exacerbation or a side effect of the Avonex. One of the neuro nurses said she had seen it before with Avonex and thought it was a side effect. I continued trying reduced doses for about 6 months. Switching to Copaxone let me get up and around again. The range of motion did not return but did not get worse. I do have some dimpling and I have pain with the Copaxone shots for about 10 to 20 minutes, especially if I don’t get it into the fat completely. About 12 hours after my shots I often itch at the red lump left behind. I have benign MS and have not gotten an MRI in 5 years so I do no know if my lesions are progressing or not. I seem to be about the same physically as when diagnosed, heat sensitivity and fatigue are problems and I tend to have foot drop if I am hot or tired. My memory definitely has improved. Before Copaxone I was unable to get a phone number out of voice mail without 3 or 4 tries. Now with just one hearing I can get it written down.
I took Avonex for 8 years despite having severe flu symptoms and severe migraines for 4 days out of 7. I believed in Avonex so much I was willing to put up with these awful side effects – my biggest lesion had actually shrunk and I was not having exacerbations. But I have 2 children and a husband and the quality of all our lives was not very good. So I switched to Copaxone and have been on it for 4 years. I have no side effects beyond swelling and itching at the injection site. I am not very good with an injection every day and there have been periods of time that I have not used it, but I have had few exacerbations since being on it. I am right now recovering from a massive exacerbation that started after several months of taking the Copaxone for two weeks then not taking it for a month, etc. This is proof positive for me that Copaxone helps my disease progression. Both Avonex and Copaxone have been effective for me, but I don’t get the side effects with the Copaxone that I had with Avonex.
I was on Avonex for 8 yrs. While waiting to start Tysabri, some new symptoms suddenly appeared such as fatigue, heat intolerance and leg weakness.I tried Tysabri for 22 months with no benefit….Now I’m starting Copaxone, and have body aches similar to the Avonex side effects during the evening. That surprised me-My neuro says that it may take 2 months for that to stop.
I have had MS since 1999. But was not diagnosed until 2005. Started on Copaxone 3 weeks after my diagnosis. My symptoms include fatigue, dizziness and balance issues so much so it has affected my driving. On Copx I have not had any vision loss but my balance issues continue slightly but no more vertigo. Feeling much better as I have worked on making my daily injections work. Support everyday from spouse is essential to keep going. I have divots on arms but most other areas aren’t so bad. Be sure to get someone on board with you would be my suggestion for making daily injections bearable. Remembering too that some days are bad injection days and most are just fine. Pain lasts 12-15 min. but swelling can continue through the next day. Be sure to massage your injection spots after 24 hours. Use heat before and cold after and don’t hesitate to ask your doctor for help and perhaps pain meds to help with the pain in the first year. Also share with co-workers and friends that this is in your life and true companions will come along beside you.
Was on Betaferon for 6 months. Could not tolerate the flu symptoms and depression even on 1/2 dose. Been on Copaxone amost 2 years. No new lesions, a few relapses, dimpled legs, bruises and a couple of IPIR’s, but most days I can function ok. Betaferon kept me on the couch. Just having a shower would wipe me out for the rest of the day. Not ready for Tysabri, too many risks. Happy to have a needle every day, hopefully it is keeping this monster at bay. Hang in there everyone.
Been on Copaxone since 1997; tried Betaseron & Avonex but cannot tolerate the interferons. Am 2-months new to LDN, so can’t comment much on that yet. As for injection-site itchiness {Deb (3) and others}, I finally realized that the alcohol swab was drying my skin and contributing to the itchiness. An hour or so after my shot, I remove the Band-Aid and smooth lotion or aloe vera over the injection site. It does the trick. No more itching. A hair stylist once told me she uses inexpensive hair conditioners in her lotion bottles at home for all-over use after showering or on hands after washing dishes. They moisturize, but don’t contain the glycerins/oils that leave a ‘greasy’ feel. Hope that may help someone. =)
saw a neurologist 20 years ago for optic neuritis, mri one lesion, not typical for ms. ignored it for 7 years, had stroke like symptoms on right side, still one lesion, ignored it for next 15 years. 2 yrs ago, developed heat intolerance and right leg drag. mri 5 lesions. was offered a choice of do nothing, avonex or copaxone. i decided that “do nothing” was no longer an option. picked copaxone because of my active lifestyle. been on 9 months. symptoms are the same, leg drag, heat intolerance, intermittent numbness in feet. I am not sure if I am benefiting from copaxone or not. Afraid to stop and find out.
I am very interested in your story and symptoms as everything in my story and symptoms including time since initial symptoms and number of lesions is almost identical. I have now been on Copaxone about 4 months. I have not seen any improvement but like you dont really want to stop taking it in case it is doing me good. I would be very interested to know how you are now one year or so later, and if you are still on Copaxone. I am keen to try the new oral drug Fampridine which apparently targets gait specifically
stay well
After 16 years without any medication, I decided it may be best to try therapy to lessen potential future problems. I had done really well without medication, and in hindsight, wish I never had started it.
I just quite medication due to my physician’s recommendations. (He wants to move me to Tysabri.) Bottom line is: after 1 year on this, my symptoms are much worse than have gone 16 years without any treatment. For me, Copaxone had no benefit but was POISON, and would have been better never to have been on it.
It may work for others, but only made my MS worse. My advice: if you see any progression or negative side effects after 6 to 8 months, stop and try another treatment.
After 16 years without any medication, I decided it may be best to try therapy to lessen potential future problems. I had done really well without medication, and in hindsight, wish I never had started it. I just quite medication due to my physician’s recommendations. (He wants to move me to Tysabri.) Bottom line is: after 1 year on this, my symptoms are much worse than have gone 16 years without any treatment. For me, Copaxone had no benefit but was POISON, and would have been better never to have been on it. It may work for others, but only made my MS worse. My advice: if you see any progression or negative side effects after 6 to 8 months, stop and try another treatment.
There has been a lot of attention to Dr. Paolo Zamboni’s discovery of a vascular aspect to MS. Apparently there are iron deposits in the brain that some are beginning to believe are caused by poor venous draining in the jugular veins. He has had success with many patients with a “liberation procedure”, wherein a simple balloon angioplasty is used to clear blocked veins and increase circulation in the brain. In Victoria, BC, yet another person disabled with MS has had her symptoms cleared up. Unfortunately her doctor received a professional rebuke and had been chastised by medical officials. She was just hoping to alleviate her headaches but she has found that within 48 hours her feeling in her hands and feet has been recovered, her vision improved, bladder control regained and her headache gone.
In Canada,just last week, MS patients and their families demonstrated across Canada at the House of Commons in Ottawa, and the BC legislature for governments to start funding the treatment. This is a very safe treatment (not using stents) and has been extremely positive to date. Do you know when it will start to be available in the United States? People so far have been going to Italy, Poland, and now India to get this treatment.
I was liberated i April from CCSVI and now I getting off Copaxone. I gave me expensive urine at best.
I was diagnosis 2 yrs. ago. I stated off on Rebif but decided to come off because I couldn’t handle the flu-like symptoms. I have been on Copaxone for about 16 months and now like seem that I have developed an allergy to it. At times I may experience shortness of breath, chest pains and severe itching that develops into hives( welts). My doc want to put me on Ampyra but I’m scared because it doesn’t slow down the progression of the disease. Any suggestions
I was diagnosed in May 2008. I spent 2 years on Avonex dealing with the nasty side effects. I switched to Copaxone just over a month ago and so far I’m happy that I did. Once a day injections is much more welcome that 48 hours or more of feeling like I had been caned. So far I have had 2 relapses since Jan 2010. I think I am beginning to relapse again. I am very wary of Tysabri so I have shot it down as an option for now.
I would love some feed back from other Copaxone users that have been on it longer. Thanks!
Oh and as far as oral meds go, I think there is too much risk involved this early in the game. I think I will let the test subjects work out all the flaws before I consider it.
Cassi
I have been on Tysabri for 2 1/2 years and my neuro and I want to stop due to increased rick of PML. Im thinking about changing to copaxone, any thoughts? I welcome any input. My symtopms have progressively got worse since starting the tysabri, bad spastiscity, balance, and weakness. So im confused as to what to d next. Thanks
I was diagnosed in 2001 was on betaseron for 1.5 years then developed an allegic reaction. I stayed off all meds until 2005, then I went on Rebif within 3 months I couldn’t walk. I went off the drug. Now I had to go back in 2010as I started having my symptoms worsen. My Doctor put me on Copaxone. I was tolerating the medication fairly well and even had more energy etc, I was getting injection site reactions, Big swollen lu,mps chronic itching. occassional dizzy episodes for 3 days or so. So now after 2.5 months on the medication I have such serious Vertigo and weakness. I stopped the Medication for 3 days got a little better did 1 more shot and was so bad I made my husband take me to the hospital. So now 3 days later I’m weak and just dizzy. Wish me luck in finding an answer. Good Luck to us all and God Bless
I have been on copaxone since March 08 and I will stay on it because take medicine for high blood pressure, thyroid aand bi-polar disease. The copaxone works better for side effects except my chest and waist have grown. I need help with that, but Copaxone keeps my ms in better control.
I was diagnosed 9 yrs ago. I initially treated with Avonex,for 3 yrs., but still had 1 significant ( leading to time off of work) relapse per yr. Then Rebif for 1 yr., couldn’t tolerate the injections and had a very significant relapse(6 months off work), I then begged my MD to try Copaxone after hearing some very good outcomes from other people. I haven’t had a “significant” relapse in 5yrs….I have had “minor” symptoms, but was able to work through them. I have had pretty good results on Copaxone, actually ran around with my kids and flu kites this fall!
I was using Avonex for 5 years. I hated it as it took 2 days of flu like symtoms each week. This made me feel really low on energy all the time. Always recovering from a flu. I cannot belive I stayed on it so long. However I have not had any relapses on it ( diagnosed 8 years ago, 1 change on the MIR, after giving birth) Then I started copaxone was on it 3 months, then became pregnant, now on it again since 2 months. I get swollen bumps for 1 week but much better than flu.
I was on Copaxone for 8 years. The sweating side effect became unbearable eventually. Needing to put towels between skin and clothing all the time. Social life non existant. Nose running badly. Just not worth it. Trying to go diet and lifestyle as treatment.
I have a dilemma and would love input…I just started Copaxone in December of 2011. They just found a new lesion that just formed in december. So now I have 6 lesions on my brain and one on my spinal chord. My doctor wants to switch me to that medicine that can give you a brain infection just because of it. I refused because it takes 6 months for copaxone to work but my question is this. They found 5 lesions in May of 2010 (they were old and could have been there for years) but how come it took almost two years for another lesion to form only after I started copaxone. I was fine and never developed another lesion while not on any medication so I am confused. Now I could have formed the spinal chord one recently but I didn’t do the dye in november of 2011 because I was in a closed mri machine and couldnt stay past the hour and a half but anyway…Ii am still trying to understand the drug. I don’t understand why this doctor just wants to change my drug of choice and it has only been three months..thanks anyone for any comments
Has anyone heard on N-acetyl glucosamine as a treatment for MS?
UC@ Irvine had lab mice research reported in Oct 2011. I understand they may start study with huiman trial later this year.
May be an effective treatment for other maladies as well.