7th Besremi shot was last Friday and I did 125 mcg. I stayed at 100 mcg for about a month or more, but increased it a bit to avoid a phlebotomy as my iron levels are finally returning.
Got CBC today. HCT was down a bit to 41.9 which means I can avoid getting phlebotomy...for now. I try to keep it below 42.
WBC: 7.0 same as a month ago. PLT were up a bit but still lower than I've ever had since I got my DX: 566.
Some GI issues with this last shot, but nothing terrible and GI upset could have been from supplements.
Itching like crazy last night so I'm going to start taking a Clartin everyday.
Written by
Elizka
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On the whole really good news. I am also taking Claritin to deal with the Besremi-itching. I needed it anyway for seasonal allergies. it is working great. Claritin = no more itching.
It sounds like you are on the right course of treatment. All the best as you continue to do so.
Good specific info. I chickened out of the increase to 150 based on some members' troubles with Bes lately. My Dr just agreed it's ok to stay to 100 for a while. I'll squirt it on the plus side of 100. I'm also worried about HCT, mine is up to 44.1. Dr says no problem, and for a guy 45 is ok, but I hope the trend is ok.
You think your slight HCT decrease is from the recent higher shot?
My Dr nixed the idea of any Rusfertide combo (If it were approved) to kick the HCT a bit. He's conservative on any drug combo without good data.
My Hb went down a bit last CBC, to 15 vs HCT up. Is your Hb good too?
I've got very slight Pruritus including the water type since starting Bes. But it's least of my issues for now.
My HEM is also on the conservative side; but he is good with me making the final decisions about my care. Yes, 45 for a guy is OK. I feel better when my HCT is 38 or lower and I know anything behind 42 could put me at risk.
My HCT:
44.4 January (Yikes, with Holidays I didn't get CBC or PB)
40.8 February before Besremi and I got Phlebotomy.
38.0 March. I assumed Besremi kicked in
42.6 April Besremi 100mcg.
41.9 April Besremi 125
I have NEVER had my HCT decrease unless I've had a PB so I believe the slight decrease was due to the increase on Besremi. It isn't the end of the world, if I have to get a PB, but I'm hoping that allowing Besremi more time and increasing the dose to 125 will help me avoid it.
My hemoglobin has been 12 or 13 since January.
I'm sorry to hear about your so-so days. When I feel good, I remember the "old" me when I homeschooled three girls and ran a business. Unlimited energy. I want her back.
Now, two bigs things have made a difference in my energy level and mental health:
1: Focusing on getting to bed early and getting at least 7 hours of sleep. Even, if I have to be in bed by 9:30 to get in the 7 hours. I'm trying to sleep 8 hours in the next few weeks.
2: Working out in the morning. Even if I'm tired, walking, riding the bike or using the rebounder changes how I feel and gives me more energy all day.
I had a PB January 21. The big drop in March was from Besremi. That was the first CBC I had done since starting the drug and I was thrilled it had dropped so much.
Great to know Bes can decrease your HCT even if not durably so far. We've seen that this is one of the long term aspects of INF vs WBC that goes fast.
On malaise, I can feel plenty lousy and look just fine. Energy level and presence appears near normal. But it can get bad enough to make me glassy eyed and zombied. My husband of course notices that right away.
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