It's been a couple weeks of non-stop hospital testing regime's and doctor visits. I know everyone has gone through similar weeks and I don't have to tell you they're not much fun. I had my first MRI in about a year and a 1/2. I've been off Ocrevus about 2 years this coming December. Well, don't you know I had 3 small new lessions show up on my MRI. They were not active but none the less they're the first ones I've had in the last 5 years or so since I was on Ocrevus. Due to my history of having a serious infection while on Ocrevus, my neurologist opted to put me on Mayzent. If I do experience symptoms of any type of infections, Mayzent is easier to get out of the body then Ocrevus. It seems Ocrevus can last in the blood for over a year. Besides the MRI I also had a diagnostic mammogram. The last one I took several weeks ago came back questionable. That's always a worry but it came back just fine and I left the hospital with the clean bill of health. Ìt just weighs upon the mind to have so many tests all at once.
So here I go again back on a DMT at 64.
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Fancy59
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My sister who probably has had MS the longest is no longer on a DMT. She her twin and myself all have it. Please lean on Jesus as you need the peace that passes understanding. I don’t need to tell you how we MSers can get overwhelmed EASILY! I will pray for peace and that you will be reminded that YOU GOT THIS! Keep us updated #wecareaboutyou
Hi Fancy59🙂Yes, I did hear that same statement you were told. But now I'm convinced, after hearing your story, we should not be complacent but always be aware that this monster aka MS is never going to go away.
I have been getting back to doing the annual exams, Fancy59 . It’s tough when you get a worrisome diagnosis. I am thinking of discontinuing my DMT and will discuss with my neurologist at my next appointment in January. However, you are making me think long and hard about that. Please take care of yourself. 🙏
I know what you mean. Next week have a colonoscopy and a GED (endoscopy of the stomach, esophagus, and duodenum) and then a mammogram shortly after that. It has been many years since I have had any of these cancer screenings. I'm feeling anxious.
My understanding is that as we get older, the rate of progression slows down, and may stop altogether. But any symptoms you have already will always be there. The good news is that over time, you get better at learning how to overcome your symptoms.
I wish you all the best as you start on a new med. I'm sorry that Ocrevus didn't work out - it is effective at keeping those lesions at bay. I've been on it since 2019 and each MRI has shown no new activity. Keep us posted. Stay strong
SO sorry you have been going through all this MS drama.. it is not for the meek. I hope everything settles down for you very soon and everything with the DMT gives you the best possible outcome 🤗
I find it so interesting that we are all so very different as we age with our ms. I’m finding that mine has changed for the better (knock on wood) and hold my breath! I’m feeling better now at 62 than I have since diagnosis in 2006. I was very bad for so long. In 2016, went off my ms meds. I don’t recommend this for everyone, it’s a personal decision and preference. For me it was definitely the right choice. Over time, I have felt better and better. Getting the meds out of my system took years it seemed! I don’t personally believe what they say about only a year for washout. Just my personal experience. Good luck Fancy and everyone! Much love and respect. Kelly
After all you went through because of Ocrevus, I’m sorry that they found new lesions and you have to return to a DMT. Both my old and new neuro have recommended that I stay off of DMT’s for now and just be monitored. After the damage that Ocrevus caused me, I would have to be very careful going on another DMT.
My last Ocrevus infusion was Dec. 2021 and as of last July, my b-cells are just barley in the normal range but my immunoglobulins are still low. So, I’m still at risk for more nasty infections. 😡 I’m 66 so was hoping I could stay stable and off any more drug science experiments. But your story makes me anxious. My next MRI will be sometime after the first of the year and at a different lcation than all the rest because I’ve moved.
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Further delays in next Ocrevus infusion
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