Ending Glatopa

[agate]

I had my annual neuro appointment today and she didn't mind that I want to stop taking Glatopa.

The side effects had become intolerable, and I found that I stopped the same drug over 10 years ago for the same reason--an intolerable side effect (described in the list of adverse side effects as "bowel urgency").

I was on Avonex for 3 years, then Copaxone for a tad less than 3 years, and now I lasted 3 years and 3 months.

There's really not much evidence at all that this injectable drug (or any of the MS drugs so far) does much for someone my age or for someone with MS for this long.

[Virginia]

Agate, sorry you had such bad side effects and that you felt it was not helping you.

I do know how you feel. I have questioned how much Rebif is continuing to help me. However, I would be afraid to stop to find out because there is the possibility that I could go down even faster. I have been on a DMD for 24 years without any let up. This same one for 22 1/2 of those years. The one thing I am not willing to do is risk my eyesight if I can help it. I know when I started Rebif I was having bouts of optic.eyritis. That I think is what saved my eyesight. Also it definitely helped with other things back then, but at the age I am now I just don't know.

[flatcap]

Agate, I'm sorry you are having to stop Glatopa, but I think you are probably right about it not making much difference. I have a feeling you will be OK, and you will have the added benefit of not having to deal with the side effects you have been suffering. Please keep us posted, either here or in chit-chat.

[agate]

Thank you ever so much for the prompt replies, Virginia and flatcap.

I'm celebrating my new-found time, figuring that I've just freed up about 3 hours a week. Each shot took at least half an hour by the time things were assembled, water heated up and the gelpack warmed up, etc. Then there was putting the things away and recording the time and location of the shot, disposing of the needle, as well as keeping track of the rx with the pharmacy so as to make sure I could get the stuff in a timely way--and that took a surprising amount of time and effort as the pharmacy kept switching brands without letting me know, failing to get the month's supply of syringes when they said they would have it, and on and on.

Virginia, you really deserve to be congratulated for sticking with Rebif for over 20 years! I can understand why you are staying with it, and I'd be staying with Glatopa if it weren't for this one bad side-effect.

I got rid of any number of difficult side-effects as time passed while I was on Glatopa but I've tried everything I could think of with this one (diet changes, cutting down on stress, etc.) and nothing has worked. There was a long spell of a year or two when I had weird arthritic pain episodes in some joint or other, and the pain would keep me awake most of the night. Those were caused by the Glatopa but they did finally go away. After considerable effort put into re-adjusting to that drug, I decide to give it up, but that's the way things go sometimes.

I worry too about having optic neuritis or other problems come back. If it's any comfort to you, I've noticed that many people who have MS-related optic neuritis have it earlier in the course of the MS and then never have it again--though it often leaves them with less visual acuity than before. That's how it's been for me, and I've heard of many others with the same story.

I feel the same way about vision. I understand that blind people get along quite well with various aids that are available, and there are many aids (including, still, seeing-eye dogs of course) but I'd hate to be blind. I've had a couple of episodes where I went completely blind (very briefly), and they were frightening.

However, there was that episode of nystagmus in October, the return of a severe eye-movement problem that I thought had vanished from my life forever. I hadn't been bothered by it since some time in the 1980s. So these MS problems can come back to haunt us even after decades.

I had that episode while I was still on the Glatopa, though. The neuro didn't know what caused it but we agreed that since it hasn't recurred since then, maybe it was just a reaction to the flu shot or some other weird combination of circumstances.

[agate]

It's been 12 days since my last injection, and I feel very liberated.

I recently read something to the effect that MS symptoms get worse in some people over 50 who stop taking a couple of the MS DMDs--Tysabri and Gilenya, and so caution is being advised when stopping them.

I've never heard about that kind of "rebound effect" from stopping glatiramer though, and I haven't noticed any. I did feel especially slow and stiff lately but it's gradually getting better. I'm thinking that the body probably needs to adjust after 3+ years of regular injections of glatiramer, and a few adjustment "issues" are to be expected.

I doubt that I could be persuaded to try again with an MS drug at this point.

With glatiramer there was always the possibility of a dreaded "immediate post-injection reaction." I had a very slight episode of one of those shortly after restarting glatiramer but luckily it lasted only a few minutes. I've noticed that some people found that reaction to be so severe that they went to an ER with it. It's described as feeling like a heart attack.

The drug companies make it sound as if there's nothing to it, assuring everyone that it usually lasts only about 20 minutes. Still, even 20 minutes of extreme breathing difficulty and other symptoms can be pretty difficult. And the older you are, the harder that probably is....

I won't go into details about what the "bowel urgency" was like. I just hope it's pretty much a thing of the past.