After such a burdensome process with insurance, my first infusion was scheduled. We drove 7 hours in pouring rain, so my husband and I were both tense when we got to Cleveland Thursday night. To make matters even better, my husband was packing bags into the hotel from the car and noticed we had a flat tire! I can’t even make this stuff up! It’s funny now!!
He changed the tire in the hotel parking lot (in the rain— YUCK!) while I sat on the bed! We got to the infusion center Friday morning and we had a little bit of a wait because we were early. I got seated in a nice little recliner that sat in a row, across from another row of recliners. There were five others getting infusions and they all got Ocrevus, except for one man who got Rituxan. I was the only one who was getting the initial first dose. Another lady was getting her second half of the first dose and the others were getting their six month dose.
The nurses were so calm and that helped a ton. I was nervous! They put the IV in, then gave oral meds which consisted of Tylenol and Benadryl. They also gave a small dose of Solu-Medrol by IV. Then they let our “spouses/drivers/visitors” come in. There was a wait of about an hour for the Ocrevus to come up from the pharmacy. When it arrived, they were very efficient getting it started quickly for everyone. About two minutes after it started I got so flushed and sat up quickly. I asked the nurse if the medicine would make me hot, but she assured me that I hadn’t even had time to get any of the medicine yet and just to try to relax. I realized I was just having a small moment of panic and when I sat back and breathed it was all good.
They checked vitals every 30 minutes and recorded those. My BP and temp were great the whole way through. My lip and tongue started tingling but I wasn’t sure if I should say something or not, wondering if this was anxiety again or a side effect. I went ahead and told a nurse but no one was super concerned and it wasn’t bad enough to stop the meds.
After they increased the Ocrevus the final time, I noticed my face was itching and said something to my husband who pointed out that I was “breaking out,” so I asked him to let a nurse know. By the time the nurse arrived, I had hives all over my face, neck and chest. They were so quick to deal with this! They stopped the Ocrevus and administered IV Benadryl, Pepcid and something else I can’t remember 😬. Once it took effect the hives disappeared, then they waited a bit and started Ocrevus again. Other than being loopy and super sleepy from all the Benadryl, I was fine!
FWIW, I didn’t notice that anyone else had any issues with the medicine. All in all it went well. I haven’t noticed any major differences yet, but it’s only been 36 hours! I was very tired when I got back to the hotel. We were going to go out for dinner, but I didn’t feel like getting ready and going out so we ordered pizza delivery instead! We had a much better drive home today, and I’m so thankful that I got to get this medicine.
Even though I feel like I complain all the time since diagnosed, I know how fortunate I am. Hives are super easy to deal with and seem like an easy trade for a treatment that I feel is the right one for me.
Just wanted to share my first experience with a DMT, which happened to be Ocrevus, as well as the rest of our odd trip! It was certainly one for the books!
He changed the tire in the hotel parking lot (in the rain— YUCK!) while I sat on the bed! We got to the infusion center Friday morning and we had a little bit of a wait because we were early. I got seated in a nice little recliner that sat in a row, across from another row of recliners. There were five others getting infusions and they all got Ocrevus, except for one man who got Rituxan. I was the only one who was getting the initial first dose. Another lady was getting her second half of the first dose and the others were getting their six month dose.
The nurses were so calm and that helped a ton. I was nervous! They put the IV in, then gave oral meds which consisted of Tylenol and Benadryl. They also gave a small dose of Solu-Medrol by IV. Then they let our “spouses/drivers/visitors” come in. There was a wait of about an hour for the Ocrevus to come up from the pharmacy. When it arrived, they were very efficient getting it started quickly for everyone. About two minutes after it started I got so flushed and sat up quickly. I asked the nurse if the medicine would make me hot, but she assured me that I hadn’t even had time to get any of the medicine yet and just to try to relax. I realized I was just having a small moment of panic and when I sat back and breathed it was all good.
They checked vitals every 30 minutes and recorded those. My BP and temp were great the whole way through. My lip and tongue started tingling but I wasn’t sure if I should say something or not, wondering if this was anxiety again or a side effect. I went ahead and told a nurse but no one was super concerned and it wasn’t bad enough to stop the meds.
After they increased the Ocrevus the final time, I noticed my face was itching and said something to my husband who pointed out that I was “breaking out,” so I asked him to let a nurse know. By the time the nurse arrived, I had hives all over my face, neck and chest. They were so quick to deal with this! They stopped the Ocrevus and administered IV Benadryl, Pepcid and something else I can’t remember 😬. Once it took effect the hives disappeared, then they waited a bit and started Ocrevus again. Other than being loopy and super sleepy from all the Benadryl, I was fine!
FWIW, I didn’t notice that anyone else had any issues with the medicine. All in all it went well. I haven’t noticed any major differences yet, but it’s only been 36 hours! I was very tired when I got back to the hotel. We were going to go out for dinner, but I didn’t feel like getting ready and going out so we ordered pizza delivery instead! We had a much better drive home today, and I’m so thankful that I got to get this medicine.
Even though I feel like I complain all the time since diagnosed, I know how fortunate I am. Hives are super easy to deal with and seem like an easy trade for a treatment that I feel is the right one for me.
Just wanted to share my first experience with a DMT, which happened to be Ocrevus, as well as the rest of our odd trip! It was certainly one for the books!
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