Rituxan!: I have decided to agree to one more infusion... - NRAS

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Rituxan!

Damaged profile image
16 Replies

I have decided to agree to one more infusion (not rapid) but I want to know what else we can try. I hate MTX and it does nothing for me but there are still other drugs. I cannot wait for the holidays to end so we can get back to business. I do not want to be a difficult patient but will not be a doormat either. I am just so very tired. Do not have a lot of fight left in me, today. I will table the entire issue until Monday.

It has been raining ☔️ continuously. I am aware of the horrific storms hitting the east coast and feel terrible for them. I also am feeling sorry for myself today. The pain is so relentless. It is a burning pain. It makes me dream for the day they invent sensors for pain. I should would love to share the experience with my doctor.

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Damaged
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16 Replies
Maat2002 profile image
Maat2002

Hi Damaged. I too start Rituxan next week. I’m worried about the side effects that are associated with this medicine. Please keep us posted on how your Journey is going with this drug. I hope it stops raining there soon so you can find some relief. It’s 11 degrees here in South Carolina today and it seems like we have been in the deep freeze forever. This cold makes my pain levels so much worse. I’m sitting under an electric blanket as I write this post to keep my joints warm.

I hope you start to feeling better soon.

Damaged profile image
Damaged in reply toMaat2002

I have decided to do one more round. Once I comply I will push for another drug. I simply do not believe it will suddenly work after one year. I also do not want to be difficult. Except for the infusion reaction (from rapid infusion) I have had no side effects from Rituxan. I am allergic to everything , it seems, so that is saying a lot. I hope it works well for you.

in reply toMaat2002

Hi Maat - I am in Virginia and we woke up this morning to 7 degrees and dropping - eeks...

Maat2002 profile image
Maat2002 in reply to

Hi Caeryl!

We woke up here in South Carolina to 10 degrees. I’m so ready for winter to go back to the arctic Circle! I hope you can stay warm and stay inside this weekend. They say temperatures will be going back up on Monday. 40 degrees is going to feel like heaven.

in reply toMaat2002

Hey Maat - I grew up in Denver, so I actually like snow and cold. About March however, I will be completely ready for warm. Then it will get to 105 degrees and I'll be whining for cold... *sigh* Never happy, huh? ha ha =)

Maat2002 profile image
Maat2002 in reply to

Hey Caeryl

That’s me to a tea! Lol. We are suppose to start thawing out next week YAY! I can’t wait for the 50’s and 60’s for sure. If it’s gonna be this cold I want to see snow. We woke up to 7 degrees this morning with a -1 wind chill. I’m so over this arctic blast. I’m so ready for it all to go back north.

Damaged profile image
Damaged in reply toMaat2002

I live in Maple Ridge BC. We currently have rain, rain and more rain. Also very difficult on my body. I feel bad about the east coast and interior. They are enduring one storm after another. My sister said it was 30 below in Hamilton. Brr🌡

in reply toDamaged

Oh my - That IS cold... I remember dealing with that in Colorado. It was so cold that if you went out without a scarf or mask and inhaled, you would freeze the mucus in your nose.. ha ha That hurts too if you jam your mittened hand against your nose...

It's funny how much affect the weather has on us. I can't predict changes like a lot of people can, but I certainly feel a worsening when it comes in

Damaged profile image
Damaged in reply to

We have very high humidity, which is bad for me. But I grew up in Northern Ontario so many very cold nights. This is why cost of living here is so high. We currently have no snow and often go the entire winter with no snow. So, let it rain hahaha

Hi Damaged - I'm sorry you are feeling so down. I told my husband this morning that I don't understand how I can sleep 12 hours a night, and wake up still tired. What you are going through is, unfortunately true for most of us.

Have they given you anything for the pain?

Hmmm - Pain sensors would be great if they truly are accurate. I would be afraid of them at first though because they could be easily muddled with.

Here's hoping that you are feeling better and can hold out until Monday..

Damaged profile image
Damaged in reply to

I have had chronic pain for twenty years so sadly, I have had many opportunities to Grin and Bear It lol My father I laws favourite expression.

I use a vaporizer and it is enough to keep me from loosing it. I have developed an incredible pain tolerance but it builds up. I have been up since 3 am and cannot sleep longer than forty minutes at one time. After several days I can no longer function. But if the only option is ER I need to be in full blown migraine or forget it.

in reply toDamaged

I understand - The only time I have been to the E/R in the past 30 years was a couple of Februarys ago when I thought I had broken my foot... I wish I could wave a wand and help somehow.. Take care, and have a great weekend if you can

Damaged profile image
Damaged in reply to

My goal is do whatever is needed to laugh. I am beginning to wonder if that is why I am provided so many challenges! The sad part is I know this is just the beginning. I hope our little geniuses figure things out , soon.

In an effort to remain productive, I have returned to studies. Now I need books that do not weight so much lol. It is amazing how different it is to review with a lifetime of experience. Learning may not be a bad way to stay distracted. If I can negotiate Biology I may begin work on some other degree or just enjoy the distraction. I am so happy I am an "egg head". It has kept me informed.

in reply toDamaged

It was funny. I got my degree as an adult (summa cum laude), and the school interviewed me for the school newsletter. When it got to the question of how having my degree helped me at work, that stopped the interview. I told them honestly that work actually helped me with the classes, and offended the poor person I was talking to.

*sigh* There went my 15 minutes of fame - ha ha

Damaged profile image
Damaged in reply to

So much talent sidelined by disease. But the joy of education is, it is never to late. I LOVE learning, period. I have such an eclectic background. The truth is a process. It does not matter what the content. However, if I never read another tax book it will be to soon. Psychology, Political Science, Sociology Financial Planning or home inspection. I can learn anything. The key is applying what you learn. Despite years in academia the greatest lessons in my life came from raising my son as a single parent. When you are responsible for another life failure is not an option. My mantra roflmao.

in reply toDamaged

I am the same way - Constantly learning. For the last 7 - 8 years I have been locked into natural healing - Herbs, Essential Oils and how to prepare all of them for various things. Never enough time

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