First off I am not a doctor or being paid in any way for this information or branding. Multiple Sclerosis Now that I have put that information on here, I would like to talk about my new and 100% approved medication as a DMD (Disease Modifying Drug) to fight against Multiple Sclerosis. So I have used other DMD's since I have been diagnosed back in 2017, both have been injection medications subcutaneously. The first was Extavia an every 3 day injection that I would have to mix and inject at the same time every time. This medication would cause my body serious damage and made my life hell, I seriously would dread looking at my body, or placing the needle into my skin. The side effects didn't start right away but once they had they progressed fast. The other issue I was having was the fact we wanted to start a family and with this medication just like many other M.S DMD's is the high risk they have to a fetus. Well as the side effects made me hate my life every 3 days, I finally called and TOLD my Neurologist that I was stopping the medication and to find me something I can take while TTC (trying to conceive). Below is an image of the injection scaring Extavia caused me, and why I started to hate myself. I looked like this for years after stopping the injections. Yeah, ouch right! My next medication was Glatopa a generic form of Copaxone. This injection was an every day injection subcutaneous (in the fat) for those of you who don't know. This medication was not bad and honestly I didn't have any side effects. Though saying that there was issues still. One being that it was nightly and had a process to do every time. So a simple injection took more around 45 min from start to finish every single day! Second the injection felt as if I was stung by a wasp and had to take tylenol 30 min before injecting, and also place a warm "Hot Water Bottle" and the site after for about 30 min after. The medication had to be refrigerated but at room temp for injection itself. We then lost our insurance and my medication became to much to pay for, and after the move to Florida we started I.V.F. so we figured stopping all MS DMD's while doing the process.
That takes us into now. My husband is stationed in Japan at the time and we made the choice to no longer wanting children, and we are ok with that because that choice opened up allot of options for both of us. I never was tested for J.C Virus so we started there to find out what medications I could take in the first place, but we were sure I would be starting Ocrevus. Well after blood work was done and my Virus load was very high, to high to try other DMD's it was decided. Now the website ill add at the bottom of this page and you can look at it yourself, but here is a down low on what I know so far. Ocrevus is an Infusion Medication the only DMD to have shown signs of slowing progressive multiple sclerosis. It is done in at an infusion center that provides medical attention when needed. This infusion takes around 5 hrs to complete unless there is other issues. The risks are many, but major are allergic reactions and death. The other issue is the fact it strips your bodies immune system and tries to re-figure it to work for you and not against you. So this leaves you compromised and able to pick up germs easier. The cost of this twice a year infusion could scare the best of people also. Today I got the call saying that I was approved and that my insurance covers 90% of the cost and all I needed to cover was the 10%. I was like ok that is awesome and then she said the 10% price for once a year payment of 6,850.00$ yes you read that right. Did I mention that I was driving! Yes, I about died right there, but then she said (Coin insurance from the makers of Ocrevus) lets see if you qualify. Wow, that made me feel better, so we discussed and I am lucky enough to qualify and only have to pay 10.00$ a visit. This med is scary and like I said before I am without my husband and I don't have a huge support system, but I do have a few friends. One my best friend is stationed here and lives a couple towns over and she will be my emergency contact and taking care of my niece while I will be having this treatment, but who do I go to for my own care? That is a question I am most scared about, and one I have dealt with many times before. As my husbands job is both amazing, but not the best at keeping him near me when my medical is crazy. I am worried to be alone an hour away from my pups, my house and anyone who knows me. I will have to drive myself there and back and I may have to have a hospital stay. But with all this we will prosper in order to more in life. These infusions will open my life to be able to travel and explore the world with my husband and that makes all of the scary part worth it. Anyways this post is long enough! I will try harder to try not to share a whole story book. Thank you again. Also i am sorry for spelling and grammar, my brain doesn't work well sometimes. Please follow me on Instagram and Facebook. links are on the contact page, and the home page. Ocrevus website: https://www.ocrevus.com/?c=ocr-1632bb43840&gclid=CjwKCAiA7t3yBRADEiwA4GFlIyfLMvgoMwLO0iiNPH4OboADi3XTVJW8sX0pZYrRI3DiGQB1yYJwBRoCelIQAvD_BwE&gclsrc=aw.ds
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Nikki
Multiple Sclerosis warrior, who is a striving artist and a enthusiastic world traveler. Archives
April 2020
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