Yesterday was my monthly phlebotomy visit. I brought my husband with me because I had my first Besremi injection with me so a nurse could go over instructions with me.
It was a rough day! The first nurse could not get a solid vein/line going. She poked me 3 times on one arm with no luck. Then another nurse came in and found a vein on the other arm and got the process going, after an hour. My blood was not flowing very well; it took about 45 minutes to get almost 500ccs; I think we all gave up at the end. I think my husband was a bit shocked at how awful the process truly is for me.
Then the Besremi shot. Another nurse came over and she was amazing with her instructions and patience. I decided to self inject (and had my husband there as support in case I couldn't do it). I used my thigh as the 'entry point'. It all went well, and hours later, I feel fine! Thank you for everyone's support. I think I can do the self-injection now.
I have been given authorization to get a port since I have such a hard time with the phlebs; I keep putting it off but after yesterday, I am thinking maybe I should just get it. I hate the idea of a port in me, but everyone assures me the phleb process would be so much easier. Does anyone have thoughts/experience with this?
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MrsBerri
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Sorry you had such a rough experience. Once I started Pegasys I only needed 2 phlebotomies in 9 months. I hope Besremi agrees with you and that it controls your bloods with few side effects. ❤️
I don't have experience with a port, but I do have with the multiple painful insertions with fat needles, just had one two days ago with an MRI. Worst is when they stick it in and wiggle it.
Good thing about the Besremi needle is how tiny and painless it is by comparison.
Glad to hear the self-injection went well. It really is easy to do. I find it easiest to inject in the abdomen but it can be done wherever works best for you.
Sorry to hear about the trouble with the phlebotomy. That can happen for a number of reasons, including when the blood is too viscous. Once the Besremi has time to work, you should find phlebotomies much more rarely needed. I have not needed one in over 18 months. Some find they can stay phlebotomy-free when on Besremi.
Hi,I have a port .I agreed finally due to having so many infections due to Bronchiectasis,which I suffer,and needing intravenous antibiotics regularly,which when needed I administer myself at home. It is very useful also with my blood transfusions....now 1bag roughly every 9 days.I have MF.I was like you unsure about having one fitted but now pleased I did it makes life easier.It's your decision though.
No experience with port. Sorry for your troubles with lab draws. Hopefully someone here has experience that can help. Thanks for sharing, best of luck with Besremi!
I have a Hickman Line at the moment, which is like a port but has three lines sitting on the outside. Insertion was quite a big deal but painless as they give you local anaesthetic. The main disadvantage is that the dressing can be uncomfortable and needs changing weekly. Also showering is a bit of a faff as you have to keep it dry (although that may be easier with a port).
I am just curious to know why there is seemingly few people to use Besremi. Besremi is listed as the preferred first-line therapy. Why only few people use it?
My understanding is that it is a new drug; it was approved in the U.S. in November 2021. Also, it is expensive. I saw the 'list' price as $15,900 for 2 injections. If I didn't have medical insurance that covered it, I would have not been able to afford it.
Having the port is amazing, I had one for over a year for immunotherapy treatments and was glad to have it. I didn't use the numbing cream before each use as suggested as it felt like it was little benefit for a small poke through the skin. You may want to mention to your scheduling person that you have a port and want to make sure you are scheduled with a someone who is port certified. Also there are shirt made for using the port; allow access to port without having to take your top off. Quick search online should give you a few options for styles fit if you want. I think you will be happy with your decision to get the port. Good luck to you.
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