Just got approved for Besremi!! So happy! Took 2 doses of Pegasys and I finally got approved on my 3rd appeal! What are the most common side effects that I might expect to see? I have Budd Chiari syndrome so hoping it’s not too harsh on my liver! Thanks in advance for any advice!
Jeanie
Jeanie… I’m not on Besremi yet but I’m also interested in your responses. 😀
Lately I've had symptom relief for a few days after each injection, but the following week gets flu like or other things. I recently posted on my trip last week, the thread suggests going to high altitude on INF may be a concern. Also I am a Covid long hauler and there seems to be an effect with INF there for me. By itself my long covid is not a biggie, but it may be combining with the INF in some way.
I can't say whether my experience is common, but it is one info point.
Adjusting for the right dose is important, esp with your liver concern. I'm currently looking to the min dose to get blood response till/if I better acclimate to Bes.
Good for you for advocating for yourself. When it comes to dealing with insurance issues, we need to adopt Winston Churchill's motto "Never surrender!"
My experience has been that there is no difference in tolerability and efficacy at lower doses. Others have experienced difference in tolerance, some tolerating Besremi better, others Pegasys.
One thing to note is that the conversion from Pegays to Besremi was not well researched and will not be in the dosing instructions from PharmaEssentia. The conversion formula recommended by Dr. Mesa is (Monthly Dose) x .7 / 2. This means that if you were stable at 45mcg PEG you would start at 63mcg of Besremi. The standard dosing instruction is to start at 100mcg. Here is a nice presentation from Dr. Mesa on Besremi.
youtube.com/watch?v=KhKwDj5...
Do be sure to review this with you doc in deciding where to start your dose of Besremi.
Happy jabbing.
Thank you so much for this information! I was actually trying to get into see Sr. Mesa for a 2nd opinion, but not having much luck! I have liver disease, chronic kidney disease and multiple autoimmune issues (hypothyroidism, vitiligo, lupus and alopecia). Trying to do my best with the cards I have been dealt and live my best life! One year ago I was in the hospital because I clotted off all my hepatic veins in my liver. Almost didn’t make it! So scary. Today I feel really good! Back to riding my bike, running and swimming. So thankful to be alive.
Dealing with multiple conditions can be quite a challenge. Wishing you great success in juggling them all and continuing with a good quality of life. That is something I make very clear to my care team. Quality of life is my primary goal. Length of life is a secondary goal. Both are important, but quality matters more than length.
Wishing you both quality and length.
BTW - I told my docs that I want to be the World's Most Boring Patient. One doc just laughed. Another said "The ship has already sailed on that goal." SIGH. Still something to strive for. Boring is good!
I hear ya!! My liver Surgeon calls me an enigma! 🙄 Not exactly what you want to be called by the head of the liver department at a very large teaching hospital! Wish I was a boring patient too! Oh well!
I’ve just looked up your liver illness. I do hope medication is keeping you in good health
I can't speak to your other condition and the impact of Besremi, but I have only had one side effect after 4 months on Besremi--migraines. I *think* I have resolved them for now. I wrote about it here: healthunlocked.com/mpnvoice...
Good luck!
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