Trial Interventions

Jerry: They would FedEx the drug to us. And they would tell us what day it was supposed to arrive, so we were-- made sure we were home. And it arrived on time every time, FedEx. And, of course, then we'd start it the following Monday. And then we'd go two or three weeks, whatever it was, can't remember. And then I guess we would discuss with her the effects of the drug that we just used. And she would tell us when she was going to send the next drug and so on.

I have to inject myself every day, which is something I've never done. But it's, I think, what they call-- it's a subcutaneous injection. So, you're just injecting the fat in your body. So, it's not a very deep injection. And it's a bit painful going in, when you're actually putting the medicine in. But it's not something that, if you deal with MS pain, just can be pretty painful. It's almost like it's close to nothing. It's not a nothing, but in the big scheme of things, it's not a problem. And it's the first time I'm doing that. So, I feel like, if you wanted to do it, I think anyone could do it, for the right reasons. And I've tried acupuncture, and you get more stings with acupuncture. And they say they don't sting, but they do. And sometimes it can really sting. Also, I wouldn't want to tell people, don't do it because it hurts. I think it's a good therapy.

They'd send you every—because it was two weeks per segment or whatever. They gave you an A pill bottle, and a B bottle. And they're red and blue, you know what I mean. So, then they say, “Take one red one in the morning and then take two blue ones.” Or, “Take one blue one or two red ones.” They'd switch it up all the time, but they would tell me what to take. And then I'd have to answer a survey, a questionnaire.

Because it didn't always make-- when you go on and off medications like that, they would always give you-- there would be a two-week period in between. You did the red and the blue bottle for two weeks and then for two weeks you wouldn't do anything, so you could get it all out of your system before you start another one.

And so yes. So, I went there. After the first questionnaire, she gave me the first method, which was the 12 pre-filled syringes. And they also gave me the applicator. So, they gave me everything. So, I didn't have to worry about using my own. And she told me, “Use our medicine, use our applicator. Don't use yours, because this is our study. So, we don't want you to use yours, because we want to make sure that we're doing it from our supplies.” So, I did. At the end of the first month, and I went back, and then we had a questionnaire. And answered on the skin irritation, or did the applicator work, did it fail at any point in time, did you miss anything? And so, no. So, I answered it correctly.  And because I was doing the pen when I did the pre-filled syringes, I noticed that the button was much softer to press. The part that I don't like with this applicator is, I have to push the applicator back to release the lock. So, when I'm injecting everywhere, then I can use the two hands. But when I'm injecting here, I couldn't use the two fingers. And so, I'd have a hard time. And so that's when the nurse told me, “Just don't inject in your arms. If you don't need to, you have--.” So, I said, “OK.” So then after that one month, then she gave me the Rebidose pen, which is huge. And I said, OK. So, let me do that. And so, I did that for a month. And what I was noti Participating cing is, the button was harder to press. And I was pushing it much deeper into the skin.  And so, I said, even as much as I hate touching the syringes, it's seeming that one is much softer, and it wasn't causing the skin-- because sometimes, when I would put the pen, it was too hard. And it would cause, like, a round mark or a purple, if I moved the needle. So, at the end of the second month, I did the same thing.  Oh, and I returned all the supplies to them, that's right. They wanted the syringes. So, I kept everything, and they collected everything. So, at the end of the second month, I completed the questionnaire. And they obviously said the same questions for the auto-injector as the Rebidose. And then one of the questions was, which one did you prefer? And then that's when I responded that I preferred the pre-filled syringes.  And she says, “OK, you're done. You're done with the clinical trial. Thank you for participating.”

So really then it would have just been the medication, whether I would be able to tolerate the medication or not. I did have a reaction the first time I got the infusion, because the Ocrevus is an infusion at this point. So, they knew what to do, and it was fine. I did get sick. I was due for another infusion 2 weeks later. That's how they kind of titer to you in at first.

I had every side effect. I had itching, and I could hardly eat anything, and I had the diarrhea, and I'm like this is not– so then I had to finally call the neurologist and say, I think I have the real medication, and I think I have every side effect you want to think about. And then I had to stop, and I had to dis-enroll because it was too unsafe. I couldn't– I couldn’t eat. I couldn't keep anything down.