I posted on here briefly a while back, but at the time I was pretty stable and I fell out of touch on here.
Now, I am progressing pretty rapidly. I had a nasty gall bladder infection last April, resulting in surgery and five days in the hospital. I also got pneumonia. It all just sent my MS into hyperactivity and it's been a downhill slide since then.
Recently had MRIs and found that my MS has progressed to about 3X the damage I had previously. The Neuro says she thinks I'm either on the brink of secondary progressive or am already at that point. She wants to start Ocrevus ASAP.
I'm nervous about the Ocrevus. But I'm more freaked out by new symptoms and difficulties.
How do you all deal with progression of symptoms? Any advice about Ocrevus? I admit that I am scared at this point. Before my experience with MS was kind of a "panic>denial cycle" but now I'm just panicking.
Thanks for any advice or tips for coping with this transition.
Sorry to be so negative.
Written by
nexttothesalt
To view profiles and participate in discussions please or .
I was on Copaxone but quit after bad reactions. I have not taken anything since and most likely wont.
To each their own, I say.
Some things have got worse over the years but nothing I haven't been able to adjust to.
That's not to say that there haven't been occasional meltdowns, we are human after all.
I get the fear people can feel though.Not just from medical pros, but friends, family and strangers Find out as much as you can,good and bad and make your decisions from there.
It empowers you.
When I was diagnosed with Type 1 diabetes. I heard so much hopeless horsesh!t about my fate that it prepared me for the horsesh!t I heard when I got MS.😅
If there was one thing I'd recommend it would be exercise. Anything to build strength....just not too much so people don't ask you to help them move😅
Yes. It started with my left food. It then involved my left leg and now my left arm. I notice the arm when doing resistance exercises. It is way weaker than it was and feels heavy.
I get the fear.. the fear of the unplanned and the unknown is really scary.. ocrevus was not an option when I was having new lesions on my MRIs and when I was recently thought to be going into secondary progressive but unbeknownst to any of us I had several bulging discs in my lower back that were responsible for the pain and weakness that I was having in my quad and knee plus weakness that was tossing me on the floor.. a year and a half later I have had a couple of epidural injections in the OR and have a new lease on life.. life comes at you fast but hopefully you are surrounded by a great care team.. I completely agree with falalalala -regular exercise is critical.. keep us up on what is happening with you.. you’re surrounded by knowledgeable and seasoned individuals
I was taking Tecfidera for about 18 months, but some days the flushing was terrible. I began looking for alternatives and through conversations with my neurologist, I leaned into Ocrevus.I'm glad I did. I've been on it for five years now with little to no side effects. I was doing the every six month cycle, but found that every five months worked better for me.
Welcome my friend. Never apologize for expressing yourself here; we care about each other and your feelings are authentic and yours. When we notice any changes, it’s scary. I’m not using Octrevus, on Capaxone. Reading and researching the medication is important. If you do decide to go with it, keep a journal of your health journey tracking “how you feel and any changes.” It is important to find the right Disease Modifying Treatment for you. Please keep us posted. Prayers 🙏of healing and better health. Blessings and Peace. NeeC
New symptoms and difficulties are so hard. They are a daily reminder that we are not in control of this beast.
And that's true, but we can try things that may give us a little more power.
I'm certainly not a MS 'veteran' yet, as I've only been diagnosed for 7 years. Those of us more recently diagnosed are so 'fortunate' to have so many newer, more effective DMTs available. Those who have been on this journey much longer had no options.
It took some new symptoms/lesions for me to decide I wasn't going to let this disease make all of the decisions. I used to think that trying stronger medications meant I was losing some sort of battle. We aren't giving in or losing something to this disease by choosing something that may work better.
If your doctor is recommending a medication change as the right path, I suggest doing that sooner than later.
You may find yourself more at ease by trying to fight back.
My Neuro has said that if the Tecfidera stops working or I have to come off of it because my white cell numbers drop any lower, then she recommends Occrevus to her patients. It scary to have to try a new medication of any kind. I was originally on Copaxone (dayly and then 3xs weekly) when I was first dxed in 2006. I was tired of the injections and running out of locations after doing it for so long. About 4 years ago I switched to Tecfidera and glad I did.
Do what you feel comfortable with. Since your symptoms have gotten worse, the MS neuros know what your choices are and are recommending what they think will help you best. It's worth a try! You can always try something else if this doesn't help.
First thing to remember is everyone is different & everyone's MS is different. Research the different medications & talk about them with your neurologist. Try not to be worried or afraid because it will only exacerbate your MS. Stress is one of the worst culprits in aggravating MS. Having MS isn't the end of the world. It just means you need to make some changes in your life & look at each day as a new adventure. I was diagnosed in 3/2005. I've had my ups & downs over the years & have used 5 different meds. I tried Core us & was on it for 2 years until it just quit working for me. I'm now on Vumerity, which is working great for me. My MS is & has been in remission for a year & a half now. I only have residual symptoms from the already damaged nerves such as numbness on my feet & I do have some cognitive problems.If you haven't checked into the various MS websites please do, starting with this one. Knowledge is power. And you have MS it doesn't have you!
Hi, nexttothesalt! In February, I will get my 7th Ocrevus infusion. No side effects, except my heart races for about 8 hours afterwards. They say that is normal. My hair might be a bit thinner, but that could be because I am 63 now! Pray about it! Keep us posted!
I was nervous to start the Ocreves also; some of the possible side effects are very scary! But, I’ve been on it for over two years and, “knock on wood,” it’s given me my life back! I can do things I couldn’t do three years ago. Sure, I still am fatigued all of the time, but I can get out of bed and have motivation to accomplish some tasks! No new lesions in 2 years either! When the infusion is being started, I do get a very uncomfortable flushed feeling after one of the pre-requisite shots….. I cough and feel very weird for a few seconds, but it passes.
Good luck to you! Hope the new treatment helps you too!!
I just had my first full dose of Ocrevus on Saturday Everything was good during the infusion but when I came home I started having bad headaches, eye sensitivity & nausea. The headaches were not usual headaches or sharp pain but weird feelings going on. I really don't know how to explain it. I started taking Tylenol & Advil, it started subsiding by Wednesday.
Has this happened to you? Thanks for any helpful thoughts. 😊
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Its that time again! My 6 month mark on Ocrevus.
RRMS to SPMS or PPMS the whole time?
Ive been watching! 🤣
Time for a wheelchair?
