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Posted: Tue Mar 15, 2005 6:21 pm Post subject: Copaxone and Fatigue?
I have been trying to adjust to the MS meds since my DX late 2003. Tried Avonex for about 6 months and was really sick for mostly the whole time. Went on Copaxone and felt like I was doing alot better but have been really tired (Been on Copaxone for about 4-6months). I went off for about 2 weeks last month and I started feeling alot better. Of course my neuro increased my zoloft and put me on na...(Can't remember the name now. Some anti-seizure med).
After she made those changes I really thought I could become a productive person in society again. Then I started back on Copaxone about 5 days ago.
So much medication, so little time.
Has anyone else experienced fatigue increases with Copaxone? I am not ready to drop it because I really think I need to let all my meds settle down before changing anything else but I am really starting to wonder about a fatigue connection with Copaxone.
Posted: Tue Mar 15, 2005 10:14 pm Post subject: Re: Copaxone and Fatigue?
vajkb2 wrote:
I have been trying to adjust to the MS meds since my DX late 2003.
So we were diagnosed around the same time; myself in August of '03. And I know what you mean about trying to adjust to the meds . My MS is no big deal so far, and may stay that way, but, man, for some of us those meds can really mess up whatever's left of our quality-of-life.
Quote:
Tried Avonex for about 6 months and was really sick for mostly the whole time.
Bummer. I'd been expecting that myself, the flu-like symptoms with Avonex, but it never happened. Avonex never made me "sick", exactly, in fact I thought I was doing just great on it, until I got up to the maximum dose, at which point I promptly became wildly suicidal exactly once a week, totally out of the clear blue sky, 2-3 days after the shot. After three weeks of that, I had to stop taking interferon or die, literally.
Anyway, that stuff was no fun for either of us.
Quote:
Went on Copaxone and felt like I was doing alot better but have been really tired (Been on Copaxone for about 4-6months). I went off for about 2 weeks last month and I started feeling alot better.
I know what you mean! Although Copaxone didn't exactly make me feel seriously tired as much as it just seemed to make me feel kinda cr*ppy and uncomfortable in general. Not severely, though, and I managed to keep going to work and everything, but I really didn't feel like doing much of anything, and felt little or no positive energy at all.
And like you, I definitely began to feel better in general after getting off of Copaxone, but it was my ridiculous local reactions that forced me to discontinue it, not the lousy, malaise-type feeling, which was really only mild-to-moderate for me and reasonably tolerable. But one day after only a few months on Copaxone, I stood there, needle in hand, and suddenly realized that I had come to the end of the road...there were no injection sites left whatsoever. So I decided, "OK, guess that's it for that stuff."
The last shot of Cpaxone was a year ago this week, as a matter of fact, and I've still got tender lumps...Looking back on it, sometimes I wonder whether my extra-dramatic, enormous injection site reactions were actually triggering my MS symptoms. Like I said, I felt much better after getting off of it too, but it's possible I would have gotten over that stage eventaully anyway.
Quote:
Of course my neuro increased my zoloft and put me on na...(Can't remember the name now. Some anti-seizure med).
Could the "Na" medicine possibly have been "Neurontin"? That stuff really knocks some people out. Although you were already having the fatigue before that, weren't you? ...so I guess that's not it.
Quote:
After she made those changes I really thought I could become a productive person in society again. Then I started back on Copaxone about 5 days ago.
So much medication, so little time.
Has anyone else experienced fatigue increases with Copaxone? I am not ready to drop it because I really think I need to let all my meds settle down before changing anything else but I am really starting to wonder about a fatigue connection with Copaxone.
John Brown
[quote]
I'm sorry you're having such a hard time. I don't know whether to encourage you to hang in there with the Copaxone or not, but definitely hang in there in general, John . Maybe the fatigue will ease away in time. Meanwhile, have you tried ginseng? My neuro recommends it for energy. Works for me.
Sorry to hear about your fatigue. I have been using Copaxone for 7 months and have not had any increased fatigue (and I am very aware of my energy levels becuase fatigue has been a problem for me for some time). I also don't think fatigue is one of the common side effects for Copaxone. Becuase you are taking several medications and you have MS there are a number of possible causes for your fatigue (including the depression you are treating with zoloft), but it's tempting to blame the drug you have to jab yourself with.
I am also aware of how frustrating it can be to discuss fatigue with your doctors (half the time I get the feeling they don't believe me, and the other half the time I get the feeling that they think I am "fortunate" that fatigue is one of my biggest complaints). At any rate, don't abandon the Copaxone on the basis of fatigue, until you have ruled out other causes.
Unlike Flora, I am fortunate in that my site reactions are manageable. It's really important that you rotate sites and never inject the same site twice in one week (which means that if you are injecting yourself, as I do, you have to use the autoinjector). At first, I thought this was "CYA" advice from Teva, but I have found that it makes a world of difference.
Posted: Tue Mar 22, 2005 10:16 am Post subject: fatigue
My wife is currently taking Copaxon and has at one time or another taken all the other "disease modifying" drugs except for betaseron. Of the drugs that she took, the Copaxon has been best tolerated with fewest side effects. However, as some have pointed out, different people expirience different syptoms. Which possibly adds credence to the notion that MS might actually be a compilation of diseases all heaped under one heading. I would also note that all of the "disease modiifiers" except novantrone have a statistic associated with it that is only 10 points ( by generous estimation ) above the placebo effect and of course Novantrone can only be taken for a period of a few years without developing the possibility of heart damage. In conclusion, in your search for the right "disease modifier" for you, consider which treatment will give you the least side effects because when it comes to effectiveness, statistically they are all in the same ball park. Consider that my wife started on Avonex and took it for 3 years, at which time her conditon declined precariously, this at the suggestion of our nerologist who suggested that Avonex was the most potent of the "disease modifiers". Now. 10 years later, she seems to have reached a plateau, she takes copaxon and she no longer works. It wouldn't be fair to attribute all to copaxon as my wife no longer practices in her stressful job as an attorney.....the benefits of eliminatiion of that huge source of stress can't be overstated. Hope this all helps.
Posted: Thu Jul 21, 2005 6:36 pm Post subject: Copaxone and FATIGUE
Hello all,
I started Copaxone about 4 weeks ago. I found myself slidding into a horrible fatigue and depression. I couldn't think straight, pay the bills, etc. I would put the lettuce in the freezer and the cat in the oven (just kidding about the cat). My days were reduced to getting started around 2:30, 3pm. This was NOT me. Last week my Neurologist said we needed to try 4 weeks off Copaxone to see if was the "MS or the Drug." It's been 10 days off and I feel so much better. I can function again. I don't know what to think as I do feel that being on a treatment is beneficial. My site reactions were painful as well. My body was inflammed from all of the shots. Curious to hear other fatigue reaction stories. Rebecca
That is interesting regarding the fatigue. I have always had fatigue, so I am not sure if any of the drugs I am on are contributing. I still have about 2 years left of my Novantrone treatment, but I figured it was the chemo that was contibuting to my fatigue level. I never gave Copaxone a thought about its contribution. I have not seemed to suffer any cognative slips, but I am going to track.
Sometimes it seems alittle overwhelming on what to blame for what with ms. Do I just blame ms for the whole fatigue issue or do I thrown in Copaxone and Novantrone on the fatigue circle?
Usually exercise helps. I have fallen out of my previous routine, so I am going to make an effort to slowly get back in to working out at least 3x's a week.
Hubby started on Copaxone on July 4th and his first injection was awful as he went into shock and nearly passed out as he had self injected but went to deep and hit the muscle. Thank God the Lady from Shared Solutions was here as it scared me to death. All other injections have been fine although we did have a needle explode in the auto inject. That was a pain as it happened on Thursday and it took till Monday to get another auto inject. Luckily our nurse sent us a second one so the panic is off. Hubby is fine with self inject(manual) but some of his injection sites are hard to reach so I do those but I need the needle covered as I'm squeamish. Although he has been on such a short time I have noted he actually sleeps through the nite now. He normally suffers from restless leg but that has gone. I find that odd as he has had that way before we knew about the MS. He is also no longer napping in the afternoons which is also odd as he has done that since I've known him also way before MS. He had his first bout of MS(optic neuritis) 7 years ago but everything came up inconclusive. It was not till last summer that he had another bout but it took them months to realize it was not something going on with his heart and that it was MS. He was diagnosed in Jan 2005 but it took till end of June to get into Sunnybrook. His MS has been to date on a slow progression so it will be more what the next MRI shows I suspect. His lesions are at T2 C2 T2-3 T10 and T11.
Joined: Aug 22, 2005 Posts: 2 Location: OKC, Oklahoma
Posted: Tue Aug 23, 2005 3:25 pm Post subject:
Hello to Whom Ever,
This is the first time I ever did this chat thing. I've been visiting this site for the last few months and was very glad to find it.
My diagnosis was a relief for me actually.... I could now understand many things that happened to me in my past that were frightening, or weird. Some I believe had a profound affect on the course of my life.
The reason I responded was to possibly shed some light on the Copaxone / Fatigue issue floating around. I may be too late for this reply but here goes.
Copaxone does not contibute to my fatigue but I do, however, suffer from fatigue. When I was dignosed 4+ years ago I opted for the Copaxone.
When diagnosed I was 260 pounds, drank about on average a case of beer a week, was traveling overseas about once per month for work, and just generally took poor care of my body.
After the steroids, the stint of two to three biggie sized milkshakes a day, and the self inflicted pity party I was having, I woke up. I could still walk, was a bit weak, was confused as hell, couldn't remember shit, but I wasn't going to let this destroy me. At the same time a close friend of mine died of Melanoma Cancer at the age of 37. I watched him struggle til the end. I was alive, my wife and step son were right there with me, and I had to wake up.
After my friend died (he was one of my drinking buddies) I quit drinking and quit smoking. I started walking around a high school track at lunch. I also started on the Adkins Diet. My energy level noticeably increased. Around the time of my friends death my company was bought by our competitior. They fired a lot of people, by I was not one of them. I continued my exercize program. I was stressed to the max, still had trouble with pain, spasms, confusion and memory, but I stuck with my excercizing and alcohol and tobacco free life.
Well 8 months later, after my walks at lunch time turned into 30 minute runs under 9 minute miles, I quit my job for a better one. I had no problem with the health care like I thought, I weighed 170 pounds, and was slowly improving....
Here's my reason for saying Copaxone did not contribute to the fatigue I now suffer. I hurt my knee from running and have not exercized in a bout 10 months. I weigh 195 pounds and it's climbing. My fatigue has returned. I began taking Provigil. It helps during the day; keeps me alert but I can't get out of bed in the morning I am so tired. I had no problem before. I have got to start exercizing again.
Incidentally, my MS has been stable and many symptoms are less pronounced. I used to take Tizanidine and Baclofen for pain and I used to take a Parkinsons pill (REQUIP). I slowly weened off. My memory has improved (especially since I began the Provigil). I'm more alert so I pay attention to things I would other wise day dream through.
I feel very fortunate. I take the normal regiment of Vitamins now along with Provigil, Copaxone, Celexa, Zocor, and an occasional Xanax.
My body needs exercize to relax and relieve stress...I've scheduled surgery to have the cartrlidge in my knee snipped!
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. My MS is no big deal so far, and may stay that way, but, man, for some of us those meds can really mess up whatever's left of our quality-of-life.
I'd been expecting that myself, the flu-like symptoms with Avonex, but it never happened. Avonex never made me "sick", exactly, in fact I thought I was doing just 
exactly once a week, totally out of the clear blue sky, 2-3 days after the shot. After three weeks of that, I had to stop taking interferon or 
. Maybe the fatigue will ease away in time. Meanwhile, have you tried ginseng? My neuro recommends it for energy. Works for me.
Although he has been on such a short time I have noted he actually sleeps through the nite now. He normally suffers from restless leg but that has gone. I find that odd as he has had that way before we knew about the MS. He is also no longer napping in the afternoons which is also odd as he has done that since I've known him also way before MS. He had his first bout of MS(optic neuritis) 7 years ago but everything came up inconclusive. It was not till last summer that he had another bout but it took them months to realize it was not something going on with his heart and that it was MS. He was diagnosed in Jan 2005 but it took till end of June to get into Sunnybrook. His MS has been to date on a slow progression so it will be more what the next MRI shows I suspect. His lesions are at T2 C2 T2-3 T10 and T11.