Changing medicine

Well my Nero decided to change me to Gilenya. I had to have an eye test for maculer edema. I scheduled it and doc said "I will email results tomorrow. OK The next week they tell me they haven't received them. OK I call ask what's up. "Or we will do that now. OK Then I get my Echocardigram. At the end of the week they tell me you should have gotten an Ekg at that time,just drop by any time and get that done. Yes right just drop by. So the next week I get a friend to go with me and drive 1hour round trip wait 1 hour for a 5 min. test. OK done. Then I hear nothing. So I start calling "where is my results?" 3 weeks and still no results. My husband was mad. I told him "I give up .I am just going back on the Copaxone " . He goes to the doctors office to find out what is going on. They send him to cardiology. He waits 1 hour to be told the results are in the computer they should have them. He getsa copy and goes back to neurologist. Waits again. Talks to nurse shows her the copy of Ekg. She says she will send it to Gilenya. I don't know who was to blame but I am so frustrated that someone is not doing their job. Now I will have to set appointment to take the first dose and I will have to go all the way to Memphis. That will be about a 12 to 14 hour day and my husband will have to take a day off work to go with me, which he won't get paid for but they say that is the closest. Sorry to unload but I needed to get it off my chest. I hope this next ordeal will go more smoothly than the process so far. I try to stay positive but whole process has left me with little confidence. I have been off my medication for over a month now and have had to take more Aleve than I take in 6 months. Well enough about that. Hope ya'll are having a good day.

13 Replies

  • cljones, I can understand your frustration. Vent away!

  • Just can’t believe how inconsiderate these offices are they seam to think. No problem you can just taking the time to go wherever they want you to go. . I can understand about your husband not getting paid my husbands job is like that.

    But that is who you want with you.

    I hope they get your results soon if not I would call your doctor and tell them I will give you 24 hour then I’m going back on your old medicine. I would also ask if they can have the new medicine sent to your doctors office. I would tell them FEDEX does ship medicine there must be a hospital close to where you are.

    Good luck!!

  • My husband got to the bottom of things. He got a copy of the report and hand delivered it to the doctors office. Now they have no excuse. He said he was nice about it but the nurse had tears in her eyes when he got through explaining my difficulties.

  • Weird. Gilenya sent people to my house for both the eye exam and the heart monitor for the first dose. Spiked my liver enzymes after a couple months though. Keep an eye out. Just switched to ocrevus

  • How are you doing on the Ocrevus I had my first dose last week next week I have my second dose. For me not to bad I had constant pain just above my knees it has subsided I get it every once in awhile. I will see how it goes next week.

  • They said they couldn't do the home observation. I don't guess it available here. Small town doctors don't do house calls.

  • Seems to be Par for the course, these facilities are something! I'm sorry you are going through this unnecessary crap cljones! May your days get better.

  • GGRRRR!!! I hate these paper-pushers! They forget they are dealing with people, not numbers and papers! I am so sorry you are dealing with such stupid people! Frustrating!

  • mrsmike9buffering Thanks. If they had to deal with this they would be more empathic.

  • cljones I can't read all of the replies, so sorry if this is a repeat. I am on Gilenya and they sent a doctor to my house for 8 hours for the first dose. Have you asked for that? It was very easy. I just sat in my recliner and she just monitored my vitals every 30 minutes to 1 hour. She came prepared with her Kindle and I didn't have to entertain her. I highly recommend this route.

    I've been on Gilenya for a little over a year. The opthamologist recommends that he test me 2x / year for macular edema. The dermatologist sees me 3x/year, as Gilenya makes you at risk for skin cancer. And, I see the neuro every 4 months for blood work.

  • Iona60 I asked about the home method but they said that wasn't an option for me. I don't know if it is because I live in small town USA or what. I wish they could do it that way. It would be so much easier. Has it helped You? I am hoping it will help me to have more energy. We will see.

  • Hi @cljones... Sorry you are having so many challenges with switching your medication. I have had to followup with my doctor and others because too many people seem to not be able to do the simplest things. Like checking to make sure a fax was sent or received. Or making sure test results are sent to the doctor that requested them. You are lucky that your husband could do all that leg work for you. Good luck with Gilenya! I can't take that because of a heart rate issue.

  • cljones I'm so very sorry your dr's office is giving you so much trouble! Vent away when you need to. Is it possible to see a different dr in a different office so you don't have to go through this trouble all the time?



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