After two months of glatiramer acetate, a status report

I took Copaxone for nearly 3 years but stopped taking it 10 years ago.


In mid-December I began the generic three-times-a-week form, glatiramer acetate, getting 40mg three times a week instead of 20mg daily.


I soon found that the arm shots just weren't feasible for me. The reach is too difficult, and my hands and arms lack the dexterity. Since giving up on the arm sites, I've been much happier.


I've had a number of mysterious pains since starting this routine, and some of the pain has been severe. Mostly the pain has involved the arms, shoulders,  neck, left hip. I understand that this drug has quite a few possible side effects though I don't recall having them back when I was on Copaxone.


But I'm older now, and this is a different dosage. The pain problems seem to be diminishing.

I'm down to two injection sites, the two thighs, but that seems to be all right. There may be some lipoatrophy but so far the shots have been tolerable.


In fact, reactions to them have subsided to the point where the injection site just tingles painfully for an hour or two afterwards but it doesn't interfere with activities or sleep.


I was still having some bad site reactions until I made a change in the way I did the shot--the timing of the 3 shots each week.


It occurred to me that the problem might be that exactly 48 hours between shots, which is often the way I was doing them, might not be giving enough time in between each shot.


I was doing the shot at the same time of day each time, always making sure that at least 48 hours had passed between shots. This is the standard operating procedure recommended by the company.


So if I took the shots at about 9 PM every Monday, Wednesday, and Friday, two of those shots were no more than 48 hours apart.


I changed to this kind of schedule:


first shot of the week - Monday afternoon between 1 and 4 PM
second shot - Wednesday at about 6 PM
third shot -     Friday at about 9:30 PM


I've been using this revised schedule for only a few weeks but have an impression it's cutting down on the severity of the site reactions. Some of them kept me awake for many hours and I wanted to cut down on the problem.


I have charts showing the location of each shot so that I won't use the exact same injection site too often. That is also recommended by the manufacturer as a way of minimizing lipoatrophy.

The most recent shot caused fairly obnoxious burning, but still not nearly so obnoxious as some shots in the past. And this was the third shot in the series of 3.


I had doubts about changing from daily 20mg doses of Copaxone to three-times-weekly 40mg doses of Glatopa, the same drug as Copaxone, in the first place, because 20mg x 7 = 140mg total for the week and 40mg x 3 = 120mg for the week, which would mean that, while I would be getting 20mg less of the drug each week, I would be getting twice as much of it each time I injected it.


And in fact there was a fairly steep adaptation in the change from the first version of glatiramer to the second, though I think the reason for that may have been my increasing age and the passage of 10 years from the time when I stopped 20mg daily Copaxone and started 40mg Glatopa 3 times a week.


The steep adaptation involved one mini-episode of something resembling an IPIR, as well as many injection site problems, some so severe that I was awake all night. Most of all, there were episodes of arthritis-like pain in some joint or other, often nowhere near the injection site, that would keep me awake much of the night but disappear some time the next day. These gradually went away after about a year but were hard to tolerate.


"Arthralgia" is listed as a known adverse reaction to glatiramer, and I suspect that that is what these episodes were.  "Arthralgia" merely means "pain in a joint" but the pain was severe.


So my thought is that maybe a person taking glatiramer and having problems with it might need to be very careful about timing the injections so as to keep each injection as far apart in time as possible from any other injection, just so as not to be taking in more glatiramer than the body wants the person to have.

This thread, all about me, has had over 65 page views. Maybe an update wouldn't hurt.


I'm still trying this new (to me) timing of the glatiramer injections, and so far there has been a noticeable improvement in the intensity and severity of the reactions.  The painful burning is less severe and doesn't last nearly as long.


A typical week seems to be shaping up like this:


Tuesdays - shot #1 between 3 and 6 PM
Thursdays - shot #2 between 6 and 7 PM
Saturdays - shot #3 between 8 and 9:45 PM

So far so good with the new timing.


I'm not sure it's a solution to anything.


There's also the matter of leaky needles. Some of the needles leak a few drops of the medicine. That could be a problem. I have no idea why that happens. It seems a shame when each drop is probably worth quite a large sum.


The tight-fitting cap (two caps, actually) is hard to remove carefully, without pulling on the whole syringe. Maybe pulling too forcefully on the cap causes the leakage?

It's been over a month now since I changed the timing for the Glatopa injections so that there is more time in between each one.


This has been working well for me. Sometimes I have burning pain at the injection site for a couple of hours but never as severe as with some of the previous injections.


With the previous schedule, there was 48 hours between shots 1 and 2. and again between shots 2 and 3 of each week. Now there is 50.5 hours between each of those 2 shots (and 72 hours between the last shot of the week and the first shot of the next week).