Sunshine 2's Keep On Moving Thread - February

[Virginia]

I was out with my brother Eric Monday. He parked and let me walk into a building by myself. Then he and I went shopping in two stores, and one was Home Depot. Today, I got a call from other brother saying Eric told him I was getting around very well. Made me feel good.

[agate]

Glad to know you're back in form, Virginia! So good to know you're getting out and shopping.

I had to go for lab work today and found that propelling my wheelchair with a splinted hand isn't easy. I had quite a workout. Next time I'm going to remove part of the splint when I need to push that wheel.

But the lab work went really well. This was work the neuro wanted done because she's been watching my lymphocyte count. It's back up where it should be now, and this probably means I can stay on Copaxone AKA Glatopa.

Some months ago the pharmacy suddenly started sending me Glatopa instead of glatiramer acetate that is put out by Mylan AKA Viatris. I figured it was just a one-time thing for some reason and knew the drug to be the same. Each month Glatopa kept coming though and no explanation ever came from the pharmacy.

Fine and dandy except that there's the autoinjector issue. Mylan gave me an autoinjector but Sandoz AKA Novartis, which makes Glatopa, has its own autoinjector. I kept using the Mylan device with the Glatopa, figuring that if it fit and worked, I could use it.

But in January I did an injection with it in the hip where I can't see very well, and it hurt like crazy. There was a gigantic very dark red bruise and a lump, and it was very sore. Now, almost 6 weeks later, I still have the red mark and a very slight lump. So I called the Glatopa people and asked if that lump was supposed to last that long.

They were concerned about it to send me their own autoinject device at once as well as a form to fill out--they just wanted the names of my doctors, mainly.

It's possible that using the Mylan autoinjector on the Sandoz syringe caused the problem. I really wish that the pharmacy had told me they were making this substitution and let me ask some questions about whom to contact about the autoinjectors--and the support helpline that all of the drug companies seem to have for MS drugs. But they didn't.

It makes you wonder about pharmacies. I realize that they're swamped with COVID problems (vaccines, drugs, boosters) but even before COVID, it seemed as if they dropped the ball a little too often.

I haven't tried the Sandoz syringe yet but I notice that it looks a bit different though it works on the same principle. Its settings are the same.

Now I've bored everyone to tears but at least it's content here. Better than no content.

[Virginia]

First of all, I didn't realize you are wearing a sprint on your hand. I am assuming this might be arthritis. Is this correct?

Agate, I would be very upset if I suddenly got a substitution for Rebif. Then if the new drug company did not come with it's own auto injector I would be even more upset. Having said that, when I was on Copaxone, which I assume is the same drug, I gave a shot in my arm and I got a knot so big and bruised that a lady I worked with tried to get me to go to the Doctor. She thought I had some kind of allergy to the drug. I pretty much knew it was giving it in my arm which is thin anyway. It took a long time for the knot to go away and much longer for the bruise to fade. This was back when it had to be given every day, so I had to use my arms, but I am not sure I ever used that arm again.

It might be the injector or it could be that the shot just did it as it did with me. That was the only time that happened, but I had really bad site reactions.

Glad your labs went well. At least one good thing.

I wonder if Reif will come out with a generic. I hope not. I take mostly generic drugs, but I really hope I don't have to change the Rebif.

[agate]

Virginia, the splint is for an odd finger injury dating back to mid-October. I didn't want to go to a doctor just on account of something I felt I could manage at home with a splint. But after about 8 weeks of splinting I gave up on it, and when I was meeting my new doctor recently, I asked her. She said it was a tendon injury and that I might need to wear the splint for 9 months. I figure I might have 5 more months to go.

Yes, Glatopa and glatiramer acetate are really our old friend Copaxone. I've had many bad lumps from those shots, gave up on the arms long ago and now have given up on the hips. The support people at Novartis AKA Sandoz were concerned because this one lump had lasted over a month but I think it's very gradually going away.

I remember those daily shots too and wonder how I ever managed to do them for 3 years. Those of us who have been on injectable MS drugs deserve to be congratulated, IMO. There are many people who hate shots and couldn't give themselves a shot if their life depended on it, and they certainly wouldn't be up to a daily shot, and yet many people with MS routinely did just that.

I was just at the lab for routine blood work, and the technician, whom I know by now, was saying that she'd love to visit her family in OK but "nobody there has had the COVID vaccine" and so she can't go. She was saying she didn't understand why people wouldn't get the vaccine when of course they had lots of vaccines as children, routinely. We agreed that there are people who are really reluctant to get a shot. Maybe it's too much like an invasive procedure. Someone is forcing something unknown into your body. You have to have a bit of confidence that it will be OK, that putting up with the pain and possible side effects will be beneficial to you.

[Virginia]

I remember half your finger being in a splint way back then Agate, but I had missed the fact that it is still ongoing. Nine months is a long time.

[agate]

I might be able to shorten that time. I'm being very nice to that finger as it's important in crocheting. The doctor said it's a tendon injury, and I guess it happens in people who have arthritis in their hands.