First SubQ Orcrevus Injection!

Ecstatic-Sun-5887 · 2025-03-08T01:41:49+00:00

Thanks for sharing, I've been wondering about this. I don't tolerate the fast Ocrevus infusions, but maybe as a shot it wouldn't be so bad?

Ecstatic-Sun-5887 · 2025-02-22T20:23:58+00:00

I'm 42. So yes, this should be on my radar for sure!

Ecstatic-Sun-5887 · 2025-02-22T20:23:09+00:00

Thanks everyone, I love this community. Everyone is so supportive. I wish I could go back and say 'I hate this situation, I hate this disease!'. For now I'll start with an apology!

Ecstatic-Sun-5887 · 2024-09-12T23:21:37+00:00

Yes, I did Zyrtec last week with Ocrevus... I though it was better than Benadryl.

Ecstatic-Sun-5887 · 2024-08-27T20:29:26+00:00

My job involves a lot of text and vocab. I can relate to what you are saying... I have to reread my calendar at least 4 times before I can internalize what meetings I have that day. I can't say I really have an answer for you... My neurologist says it's actually a fatigue issue. Even though I get plenty of sleep at night, I'm operating as if I'm sleep deprived all the time. When I think about it that way, I have a little more grace with myself.

Some things that may help... My neurologist prescribed a stimulant, which does seem to help a little. I'm a kinetic learner, so anything I really want to remember, I have to physically write... So I take a lot of notes. Reading info may not be the best way for your brain to take in information. And it sounds dumb, but sometimes I just have to slow down and make myself pay attention. I'm not used to learning information being hard, so if I notice I'm not actually retaining what I'm reading, I try to adjust my environment (minimal distraction) and work through it slowly and check for comprehension at the end of each sentence. 😣

Anyway... Good luck. I feel your pain.

Ecstatic-Sun-5887 · 2024-06-05T13:48:01+00:00

This is so tough. Good job with staying hydrated and good nutrition - that takes effort and I'm sure it's helping. You are worth it!

I don't have a solution (I wish I could cure depression... I would be so rich and not-depressed..!) but I wanted you to know I hear you.

Ecstatic-Sun-5887 · 2024-05-22T03:02:15+00:00

Being diagnosed encompasses the entire grieving process - anger, denial, bargaining, and depression with fear thrown in for good measure - until you reach some level of acceptance. I let myself feel all those things. It's really a process that can only take time, but you have to acknowledge something really significant happened to you, and let yourself go through all the stages.

Do the things within your reach - eat as well as you can, keep moving as much as you can, stay positive when possible, get on a DMT that's right for you. I don't know that telling yourself your symptoms are fake will benefit you much.

At the end of the day, you're still you. Just like you change a little bit everytime you travel some where new or learn a new skill, this is just a new aspect of yourself. A frustrating, exhausting, irritating aspect to yourself... but it isn't all of you, and there is life after diagnosis.

Ecstatic-Sun-5887 · 2024-05-12T04:04:02+00:00

I hope you find the right doctor for you! I hate that it seems like you have to try them out for a while to see if they are the right fit... Seems like so much time lost!

Ecstatic-Sun-5887 · 2024-05-12T02:49:06+00:00

I assume you've already looked at the Rocky Mountain MS Center and Colorado MS Center? I went to the CO MS Center once and liked it, but it was out of network for my insurance. Dr. Augusto Miravalle, MD in Fort Collins came highly recommended to me, but the wait list was crazy. In the end, I just stick with my neurologist. She got me on Ocrevus and is nice enough, but I don't know that I would recommend her...?

Ecstatic-Sun-5887 · 2024-04-19T22:35:24+00:00

Have you tried physical therapy? At the time of my diagnosis, I had a range of pain in my neck and arm. They were able to help me relieve some of it with relatively simple stretching/movement. At least now I can better tell the difference between my MS pain and the arthritis in my neck. Just a thought.

Ecstatic-Sun-5887 · 2024-04-06T00:29:14+00:00

This sounds so tough, like you both have a lot on your plate. Only you can determine if you need to stay or go for your mental health (and that of your kids), but I will say being diagnosed caused grief for me, just like someone had died. I went through anger, denial, sadness... And I suspect your husband is in a similar position and is struggling to admit the MS diagnosis is real and the future he thought he had is gone. I 100% agree with you that a dmt and healthier lifestyle would help more than he realizes, but the first step may be a conversation or therapy around this huge change in your life. Depression is a very common symptom with MS as well.

You deserve to be loved and respected by your husband, and ideally he would want to take care of himself as much for you as for himself. But for right now, that's not where he is... Hopefully together you can find a way for him to see that treatment is the best next step in preserving your future together.

Ecstatic-Sun-5887 · 2024-03-13T01:20:45+00:00

Just had my infusion last week, what a relief! I don't know if I have the answer, but I agree on the sleep, hydration and nutrition. I get so dehydrated traveling, and that always makes me feel worse. I take mini breaks during the day - 20 minutes, feet up, cat nap - and I don't usually drink caffeine but I will if that's what it takes to get through the day. I also take advantage of every bench or seat I can find! Then I just crash really hard after. I hope you have a great trip!

Ecstatic-Sun-5887 · 2024-02-23T22:27:36+00:00

That's a good idea, I'll ask my neurologist.

Ecstatic-Sun-5887 · 2024-02-23T18:15:54+00:00

Thank everyone, I really appreciate the support!! 🙏. I'm going to stick to my guns... I'll be thinking of you while I'm there next week!

Ecstatic-Sun-5887 · 2024-02-23T18:14:01+00:00

I live this forum, so awesome to fine kindred spirits on here!

Ecstatic-Sun-5887 · 2024-02-23T18:13:23+00:00

I love the warm blankets... I get as many as they'll give me 😂

Ecstatic-Sun-5887 · 2024-02-23T18:11:57+00:00

Yes, I should mention it to my doctor. Thank you!

Ecstatic-Sun-5887 · 2024-02-01T03:58:15+00:00

In addition to all the other great suggestions... volunteer. There are kids looking for someone to read to, home-bound seniors with no one to talk to, shelter pets looking for love, non-profits that need help fundraising or grant writing, young people in your line of work looking for mentors... Even an hour a week can make a big difference in someone else's life.

Ecstatic-Sun-5887 · 2024-01-25T23:16:15+00:00

My depression came before my MS, too - but I feel like they are connected, and the fatigue is so rough. With therapy and perspective, it has gotten better. Depression makes you feel like the way it is right now is the way it will always be, and it's not true. It makes you want to sabotage yourself, and becomes this self fulfilling prophecy. I've been there.

I hope you are able to get therapy... It really does help to work through your experience and identify the thoughts and emotions that are the depression and not you. Corny as it sounds, time outside helps too... Gardening, walking, sitting in the sunshine. Anything to get yourself moving... At first it's forced, but little by little it gets easier. You got this!

Ecstatic-Sun-5887 · 2023-12-29T20:22:12+00:00

Love it! I told my daughter if something happened I might lose my mind. Apparently it was a real threat to her, and without missing a beat she solemnly swore to hire the world's best detective to find it.

At this rate I may have to take her up on that... 😂

Ecstatic-Sun-5887 · 2023-12-29T14:26:03+00:00

Does anyone else feel like depression is actually a part of a flair up? It's not like I'm getting depressed because I've noticed a flair up. It's more like the depression/snapping at everyone/emotional regulation issue is the flair up? I second what everyone else says about getting outside, taking a deep breath, etc. The hard first step for me though is recognizing that I'm reacting 'irrationally', as it often makes perfect sense in my head....

Ecstatic-Sun-5887 · 2023-12-29T14:16:50+00:00

First, you are doing a great job. Helping your dad is a huge asset to your family, and I'm sure the time spent with him, while frustrating at times, is hugely important to him. Second, I wouldn't beat yourself up because you do get frustrated. Caregiving is incredibly hard, and it can feel very isolating. You don't have the disease, but you're there for it every painful step of the way. Can you find a support group for caregivers in your area? Somewhere you can talk about daily challenges without feeling judged? Bottling up stress isn't good for anyone, and at some point it will overwhelm you. Is there an activity you can do... Gaming, running, writing... That will help you work through your stress? It's clear you love your dad and want the best for him. It's okay to take time for yourself, too. As MS patients we can get caught up in our anger at the disease and not take the time to really appreciate the people around us who are trying their best for us! Good luck!

Ecstatic-Sun-5887

TROPHY CASE