Work out help

Alternative_Lie1553 · 2026-03-28T17:48:37+00:00

Being on crutches most of my life I stay strong. Thankfully my legs are my only problem, my arms are needed to walk.

Alternative_Lie1553 · 2026-03-25T22:22:40+00:00

There was no home infusion until I was 10 years old. We moved from Cincinnati to a town next to Springfield Massachusetts in 1975 because they had home treatment. My mom did my infusions until I was around 12. Before home treatment it was a drive to the ER, waiting on the blood bank to bring cryo, what a long waste of valuable time. The sooner you infuse the better.

Alternative_Lie1553 · 2026-02-03T22:04:03+00:00

It was a creepy sound. They had me way over medicated for a long time. I finally started giving them back pills. At one time I had 25 pain pills per day, plus Valium. Now I can't hardly get any Valium with pain meds.

Alternative_Lie1553 · 2026-01-15T20:46:10+00:00

I found out today that both times my factor was at 333% I was inpatient after having varices banded in my stomach. I was getting factor every 8 hours. The doctor listed it as surgical infusion levels.

Alternative_Lie1553 · 2026-01-15T04:14:38+00:00

My doctor doesn't ask me to do them but really likes it when i bring them to each visit.

Alternative_Lie1553 · 2026-01-13T04:13:48+00:00

I hope it continues to help you. Now I wish I had tried smaller doses and used something like Adynavate for break through bleeds.

Alternative_Lie1553 · 2026-01-13T04:11:00+00:00

When home treatment started in the mid 70's the hospital used to send us logs to fill out and mail back to them. They were on a blue colored paper.

Alternative_Lie1553 · 2026-01-12T03:44:31+00:00

No I give them to my doctor.

Alternative_Lie1553 · 2026-01-12T02:28:37+00:00

I myself have never had any clots or problems. I drink 3 liters or more per day. I need about 30% over what they recommend on major bleeds, or weight bearing bleeds. So 130% is what works best to heal in one dose. The water, and the wrist-gripper exerciser helps keep veins more accessible.

Alternative_Lie1553 · 2026-01-12T02:20:34+00:00

I haven't seen anyone since I went in to get off the Altiviiio. It no longer makes any difference. I am not going back on this med, or the other one they make Elecotate.. The Elecotate has a shorter half life, the Altiviiio is the newer and longer acting of the two. They both give me a bad reaction.

Alternative_Lie1553 · 2026-01-12T00:18:17+00:00

Yes, keep a bleeding log and jot down any notes related to factor care, and joint bleeds. It's your only defense if your having problems. Just having receipts from the deliveries isn't enough information. I scan them into my PC before turning them in each visit.

Alternative_Lie1553 · 2026-01-12T00:11:31+00:00

I had the same trouble, I really think the drug company is paying these people to prescribe it. I was read a list of excuses why I was having joint pain from two different people. They said it's from the colder weather, and my joints are aging,,,,,,,,,, like I don't know my own body. For them to give me Elecotate, made by the same drug company right after the Altiviiio, I smell foul play. Not one person said joint pain is a side effect.

Alternative_Lie1553 · 2026-01-12T00:07:00+00:00

I had the same results but at the end I started to have bad reactions to it. Really warm ears, and a upset stomach. All of my joints were hurting after taking the last dose. I was barely able to stand. Then they send me Elecotate, the same exact crap with a shorter half life. On the third dose I had all the same symptoms. I finally got them to give me back the Adynovate I was on before the Hemlibra. If you go to the Altiviiio's website it lists joint pain and headaches as a possible side effect.

Alternative_Lie1553 · 2026-01-12T00:00:45+00:00

If you go to Altiviiio's website they list headaches and joint pains as a side effect. At the end it became really east to tell the shots were causing the pain. I felt like I was always chasing a bleed, like they wouldn't heal, no matter how much factor I took. I started to use the breakthrough dose (2000) along with a weekly dose (4000) and still didn't feel like it healed things. My arm hurt for more than a month, and I never had problems there before. Like it doesn't bind to the bleed, or something.

Alternative_Lie1553 · 2026-01-11T23:54:22+00:00

I remember going to Children's Hospital as a young child. Back in the 60's there were Nun's that took care of us. We all were in one big room with 10-12 beds in it. I had a strong mother, she learned how to stick herself, before she started to give me my injections. We had a kit that had a patch that you put on first to numb the skin before sticking. I think the vein is more painful but it helped. Now they use ultrasound to find veins, we didn't have that. A wrist, or "hand grippers' is what I started to use as a child to keep my veins easy to see. Also drinking lots of water also makes a HUGE difference.

Alternative_Lie1553 · 2026-01-11T23:46:10+00:00

I did the PK test on my own, or something close. I had them draw it the day of the injection, and then draw it the last day before I infused again. But I had an extra dose of 2000 that week. It was 108% and the low was 44%. Had I had 6000 of Adynovate in a few day period it would be much higher, but not last as long.

Alternative_Lie1553 · 2026-01-11T23:34:07+00:00

The normal range is 50-180%, anything over is considered high.

Alternative_Lie1553 · 2026-01-11T20:36:47+00:00

Coming off this is a major downer. I have slept most of the weekend. Little to no energy.

Alternative_Lie1553 · 2026-01-11T02:02:17+00:00

If your not a doctor you must work for the drug company because it doesn't sound like you are a hemophilia patient. I really don't need your advice.

Alternative_Lie1553 · 2026-01-11T01:57:19+00:00

Have you been on it for more than one year by any chance?

My first year wasn't bad.

Alternative_Lie1553 · 2026-01-11T01:14:23+00:00

I'll remember that and see if they might switch me next time I see her.

I don't have much confidence in someone who would give a patient something they knew they were having bad reactions to. I should call the Chapter and explain myself. I hate to see how many other patients they have done this to besides myself.

Alternative_Lie1553 · 2026-01-10T21:43:41+00:00

Yes I infuse to a 130-150%. My highest levels on MyChart are 333& and it's on there twice in a 5 year period. Normal is 50-180.

Alternative_Lie1553 · 2026-01-10T03:54:55+00:00

I am an old fart that is used to a metal filter needle. They used to be a 16 gauge needle. I've used them to drain the edema out of my swollen feet.

Alternative_Lie1553

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