As you can see, my life has revolved mostly around our cats Laudy and Pip. That’s as it should be for a crazy cat lady. I did squeeze in making some delicious English muffins; they didn’t last long. They were especially good with some Tiptree Raspberry Jam made in England 😋.
Southwest Missouri has been in the grips of a severe drought this summer made worse by excessive heat over 100°F these last couple of weeks. As a result, I’ve not been out of the house much because MS and heat don’t mix well. Summer has traded her usually lush green frock for a drab yellowish-brown garb that isn’t nearly as attractive. We may get some rain later this week, it’s gotta come sometime!
The MS Update Part: You may remember that a few years ago I started taking a drug for my MS named Ocrevus. It was an IV infusion given every six months and I was able to get the last couple of doses at home through home infusion nursing. Well, after a lot of prayer and discussion with my neurologist, I have decided to stop taking the drug. This will be the first time in 26 years that I will not be on a disease modifying therapy. My disease has continued to progress, in the normal course of things, to a place where there are no current drugs to treat it. I’ve known I’ve had Secondary Progressive MS for the last few years but opted to treat it with the drugs available for Relapsing Remitting MS because nothing else was available. Ocrevus has some significant side effects when used long-term and I’ve reached the point where the risks outweigh the benefits. Not everyone with MS may agree with my decision but, for better or for worse, no one else has to live with the results but me. As always with MS, no two people have the same disease progression or outcomes. Though I appreciate the concern and good will of others, please don’t send me articles and cures to try. I am probably already aware of whatever you’ve found on the internet or what your aunt’s cousin’s friend’s dad tried and how it “cured” him. I chose to educate myself about MS as soon as I was diagnosed and have stayed on top of research as well as drugs, diets, and homeopathic interventions ever since.
I am quite at peace with my decision, I’ve known this was coming for a long time. I’ve had 32 years to get used to my MS, we’ve sort of grown up together and understand each other 😉. As always, I appreciate your prayers. Considering how long I’ve had MS I know I am doing very well related to many others. I can still walk some for short periods of time and I can independently take care of most of my daily living needs. My wonderful hubby is my right hand and I know God gave me a tremendous gift when He gave Todd to me. My sister and Dad are always ready to help at the drop of a hat and my Mom-in-law is only a phone call away and has come to the rescue on more than one occasion. I also have a loving and supportive church family, as well as good friends who care and always offer to help me whenever needed.
Thanks for coming by to catch up today, I know it’s been a while since I last wrote. When things cool off a bit I’ll probably be more likely to post more often. May God be with you! ❤️, Amy
4 thoughts on “Too Hot To Bother and MS Update”
Sounds like you’ve made the best decision for you, and it’s not easy. I was on ocrevus, now on kesimpta and I still have a few more years before I start to think about life after meds. I do worry a lot about the immune compromised nature of the meds, though.
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Hi Angela. It wasn’t easy, but it was time. Immunocompromization was one of the reasons I stopped, though not the only one. I’d definitely stay on a DMD as long as possible so kudos to you for sticking it out. I think most of us eventually reach a point where we’ve gone as far as we’re going to go with drugs. So, here I am, my riding days are over, and I’m standing out here in the pasture of “they don’t have anything else to try”. Maybe someday I’ll saddle back up on a horse named Cure🎠. 🤷
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I just had the discussion with my neurologist last week about coming off Ocrevus, but for different reasons than you. It sounds like you are comfortable and confident in your decision to stop treatment. I wish you the very best in things to come. Keep us updated!
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Thanks, Shanna. One of the hardest decisions to make is how to go forward with MS. I will pray for you that you will find peace and the right way forward for your MS. ❤️, Amy