1. < Autoimmune Diseases

Drowning

Posted by buzz23 @buzz23, Sep 6, 2023

I've been sick my whole life, with increasing severity over time. I was only started on treatment about 5 years ago. I have exhausted my currently available treatment options, and I am still not getting better. I have had a generous number of strokes, a pathological fracture, have osteoporosis, keep having spontaneous bleeds while also throwing thrombi, have AVNs on both my hip bones, a struggling heart, peptic ulcers, and my white blood cells and haemoglobin are often low. As though the lupus isn't enough, I also have a very petty case of asthma, and allergies from hell.
I am currently in grad school but failing to study or work on my research because I am always exhausted. I am extremely fatigued, in pain, lightheaded, and can't sleep to save my life. My therapist insisted that I go out more to meet people and live (as does my mother) but I technically live in my bed, how do you meet people like that? Even if I met people, how do you have a relationship when you are confined to the house so much? Who has the patience to have plans repeatedly cancelled?
There is too much (with the lupus) and too little (with school) happening, and I am drowning in it.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 9, 2023
In reply to @harley22 "What happened when u took Retuximab? I’m supposed to start an infusion next week first time." + (show)
@harley22

What happened when u took Retuximab?
I’m supposed to start an infusion next week first time.

Jump to this post

@harley22 I had rituxan infusions and I had reactions to the first infusion. We finally decided that the infusion was too fast. Once they slowed down the rest of the infusions, I did okay. And no problems after. I reminded them each time I went for infusions, that they needed to go slow.
Listen carefully to instructions that you are given and ask questions!
Your first infusion is next week? What day?
Be confident! You’ll do well!

REPLY
2 replies
annaacuna555 | @annaacuna555 | Sep 9, 2023

It’s really sad to imagine all this suffocating aspects manifesting in your va life as a reality at the moment -but- hold tide to your hopes , your health could improve , a new treatment could arrive , your system could reboot itself , keep fighting, do not give up , take it by the hour .

REPLY
1 reply
harley22 | @harley22 | Sep 10, 2023
In reply to @becsbuddy "@harley22 I had rituxan infusions and I had reactions to the first infusion. We finally decided..." + (show)
@becsbuddy

@harley22 I had rituxan infusions and I had reactions to the first infusion. We finally decided that the infusion was too fast. Once they slowed down the rest of the infusions, I did okay. And no problems after. I reminded them each time I went for infusions, that they needed to go slow.
Listen carefully to instructions that you are given and ask questions!
Your first infusion is next week? What day?
Be confident! You’ll do well!

Jump to this post

My first infusion is next Tuesday.
I was told I would be there most of the day up to 8 hrs.
I guess they’re going to infuse slowly.

REPLY
2 replies
buzz23 | @buzz23 | Sep 10, 2023
In reply to @becsbuddy "@harley22 I had rituxan infusions and I had reactions to the first infusion. We finally decided..." + (show)
@becsbuddy

@harley22 I had rituxan infusions and I had reactions to the first infusion. We finally decided that the infusion was too fast. Once they slowed down the rest of the infusions, I did okay. And no problems after. I reminded them each time I went for infusions, that they needed to go slow.
Listen carefully to instructions that you are given and ask questions!
Your first infusion is next week? What day?
Be confident! You’ll do well!

Jump to this post

I get mine over 8 hours.

REPLY
buzz23 | @buzz23 | Sep 10, 2023
In reply to @harley22 "My first infusion is next Tuesday. I was told I would be there most of the..." + (show)
@harley22

My first infusion is next Tuesday.
I was told I would be there most of the day up to 8 hrs.
I guess they’re going to infuse slowly.

Jump to this post

That's how I get mine too. Then they keep me overnight for observation. I go in on Monday morning, we start the infusion around mid-morning, latest noon, and finish in the evening. I am allowed home the following morning.
May I ask what your living arrangements are? Do you have people to help you at home?
I try to do a thorough clean of the house and pre-cook some extra food before the rituximab because I live alone and I don't want to have that work in the days immediately after the infusion. That way, I come back home and spend the time resting.

REPLY
1 reply
buzz23 | @buzz23 | Sep 10, 2023
In reply to @annaacuna555 "It’s really sad to imagine all this suffocating aspects manifesting in your va life as a..." + (show)
@annaacuna555

It’s really sad to imagine all this suffocating aspects manifesting in your va life as a reality at the moment -but- hold tide to your hopes , your health could improve , a new treatment could arrive , your system could reboot itself , keep fighting, do not give up , take it by the hour .

Jump to this post

We do not know what tomorrow will bring, it may surprise us all.
I take it my the second or the moment, an hour is too long.

REPLY
harley22 | @harley22 | Sep 10, 2023
In reply to @buzz23 "That's how I get mine too. Then they keep me overnight for observation. I go in..." + (show)
@buzz23

That's how I get mine too. Then they keep me overnight for observation. I go in on Monday morning, we start the infusion around mid-morning, latest noon, and finish in the evening. I am allowed home the following morning.
May I ask what your living arrangements are? Do you have people to help you at home?
I try to do a thorough clean of the house and pre-cook some extra food before the rituximab because I live alone and I don't want to have that work in the days immediately after the infusion. That way, I come back home and spend the time resting.

Jump to this post

I do live with my husband so I’m not alone.
Do you typically feel tired or ill after the infusion?
I was fine after my 3 day course of IVIG infusions.
Is this different?

REPLY
1 reply
buzz23 | @buzz23 | Sep 11, 2023
In reply to @harley22 "I do live with my husband so I’m not alone. Do you typically feel tired or..." + (show)
@harley22

I do live with my husband so I’m not alone.
Do you typically feel tired or ill after the infusion?
I was fine after my 3 day course of IVIG infusions.
Is this different?

Jump to this post

It is good you are not alone at home.
I do feel tired and ill after the infusion, but I also feel that way before the infusion. Also, I have very bad insomnia, and being in a different place does not help. So I usually don't get any sleep on the day and night of the infusion, which worsens the fatigue. The rituximab tiredness usually starts in a few days.
The few people I know who are also on rituximab tolerate it very well, they usually leave on the same day of the infusion, and don't have excessive fatigue.
It may be different.

REPLY
harley22 | @harley22 | Sep 11, 2023

Thanks for answering my questions.

REPLY
1 reply
buzz23 | @buzz23 | Sep 12, 2023
In reply to @harley22 "My first infusion is next Tuesday. I was told I would be there most of the..." + (show)
@harley22

My first infusion is next Tuesday.
I was told I would be there most of the day up to 8 hrs.
I guess they’re going to infuse slowly.

Jump to this post

All the best with your infusion.
Please eat a meal as heavy as you can manage. It is a grandmother's tale but eating a heavy meal before the infusion makes you tolerate it better (milder nausea and more energy afterwards).
Sending you a plethora of hugs.

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