i am 76 & was diagnosed with PV 3 years ago. I am just being treated with aspirin (81 mg, once a day) and phlebotomy. I usually need phlebotomy every 6-8 weeks to keep hematocrit under 45, currently 41.5 after last phlebotomy with platelets at 645, WBC 11.3, RBC 5.45. Since I am able to get a prescription for Besremi at a reasonable cost I am considering starting it to hopefully (eventually) cut down the number of phlebotomy I need. I haven't had any symptoms that others have had with PV other than my numbers but I know the this frequency of phlebotomy isn't good for me.
Anyone's thoughts?
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wateron
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Hello. I waited for Besremi to be available for several years after reading and watching all of Dr Richard Silver out of Cornell material on INF for MPN's, and the research that lead to Besremi.
Like you, my PV had few symptoms with the exception of high WBC, PLT and HCT. I managed it for five years with aspirin and phlebotomies. But my allele burden is high and though my HCT was controlled, my WBC's continued to climb which can cause heart issues and strokes.
Yet, I still was hesitant to start Besremi due to the possible side effects. That said, IMO, it is the very best smart drug we have to control blood counts and possibly prevent progression of our disease and/or achieve an operational cure.
I was proud that I don't take any drugs at 64, but changed my mindset after watching some great videos on how Besremi works. I like to think that Besremi is helping my body fight PV.
The only side effect I've had since starting Besremi in February of 2022, is an uptick in migraines. I'm hoping I've come up with solutions for reducing those.
Hunter, ET guy and others have done a great job sharing their experiences with Besremi as well as research they've discovered. I suggest you read anything that comes up on search here for Besremi.
Hi - I have read everything I could find on Besremi here and elsewhere and that's why I am considering starting it. I am also tying to figure out how I take the Besremi with me while traveling since it needs to be refrigerated plus the problem of going through immigration in other countries with it
I have no idea what my allele burden is (or my iron & Ferritin levels) & my previous doctor said it wasn't important. I currently don't have a hematologist as my doctor left & I have been assigned a physician's assistant. I have been making most decisions on my PV care on my own.
Hi regarding travelling with your medication I think I have the solution. I’ll be putting it to the test when I travel Uk to NZ and Australia. I’ve bought some screw top water proof ice bags. That means that I can refill with ice at any pub, Mac Donald’s kfc etc when required. I’ll then place them and my Peg in a small cool bag ( I’ll need 5 peg for 6 weeks and I’ll be on various modes of transport )
My son has diabetes and has to travel with insulin, which also has to be refrigerated. He uses the a Frio Cooler pack when he travels. It is a gel pack that you soak in water and it gets cold and stays cold for several days. I don’t know how big you would need, but they have several sizes. Check it out!
I did a fair amount of research into this. The frio pack does not cool to 2-8 degrees. Frio keeps to 18-26 degrees which is fine for insulin but not for PEG or Besremi. friouk.com/the-frio-wallet/
Problem is it can only fit two syringes without the packaging. Not ideal for flights as should keep meds in original packaging for customs. I had big problems. My haemotologist gave me a letter to show which has helped. They now have a larger model see link which l will order
I use this for long haul it can take 3/4 PEG in packaging. After two long flights totaling 20 hours it was still cool. Although gel packs were 50% thawed. The problem with it it’s bulky to carry especially as hand luggage. If your connecting they may refuse to let you board with if gel packs are partially thawed.
It is relatively simple to store/refrigerate Besremi when traveling. Some use the insulin travel kits. I just use a small cooler bag with the same frozen gel packs that the Besremi is shipped in.
NOTE: The manufacturer recommends that you request a visual inspection of the Besremi. Do not pass Besremi through the x-ray scan.
PharmaEssentia has a travel letter that can be signed by your doctor. This can help passing through airport security and across country borders.
It has been a while since I have been to Europe. I have never had an issue before when traveling with meds. I would not think that it would be an issue providing everything is in its original pharmacy container. I have heard the advice about having a doc order/signature, but no one has ever asked me for one,
I am not sure about the why no x-ray. Perhaps just an abundance of caution. I have no idea about whether this applies to Pegasys too. Perhaps contact the manufacturer.
Good idea to be on the safe side and follow the mfr directions. In case one accidentally sends it thru this suggest it's not hopeless. INF is a biologic.
<<Certain drugs called “biologics,” ...require special handling and storage; travelers sometimes worry about putting them through the x-ray machine. But ... any harmful effects from x-rays on these medications would occur only at doses that are “orders of magnitude higher” than the radiation received from x-ray screening devices.>>
I do expect this falls into the "abundance of caution" category. When travelling, I plan to err on the side of caution. I have had no problems with airport security and fully expect nothing but cooperation and courtesy when requesting a visual inspection of my Besremi travel kit.
I have tried several treatment approaches for PV. Hydroxyurea was not tolerable and did not work well for me. I was also doing phlebotomies every three weeks. The HU was just too toxic for me to handle even at low doses. I went with phlebotomy-only for a while. It was OK at first, but eventually the iron deficiency symptoms were worse than the PV symptoms.
I started on Pegasys in May 2021. Within about 6 weeks 45mcg/week had the erythrocytosis and thrombocytosis under control. I switched to Besremi in February 2022. Currently at 110mcg/week. It is keeping the HCT and PLT at target. I have only experienced mild side effects. Mild lymphopenia, bodeline neutrophils, and mild itching. I consider the IFNs to be the most effective and most tolerable of all of the treatments I have tried. The IFNs are the only disease modifying treatment option we have. In addition, I have a non-driver mutation (NF1) that increases my risk of progression to AML. Besremi is the option that has evidence that it reduces risk of MPN progression.
There are a number of us who have been posting about our experiences with Besremi. You can find those threads with a search if you are interested. Note that a number of us are finding Besremi (and Pegasys) effective even at relatively low doses.
I'm 75, will be 76 this year and was diagnosed with PV 8.5 years ago. I've tried a number of different medications, all with differing side effects and outcomes. I'm now on Besremi and so far this is the best one. Very few side effects and keeping my numbers under control, so far with no need for phlebotomy (3 months and counting!). unlike you I had a lot of PV symptoms and the Besremi is slowly but surely taking those away as well. By the way, I'm only on 50mcg every 2 weeks.
hello 9721, so sorry that you are experiencing fatigue and weakness. Which MPN do you have and are you taking any medication for it? Some medications for MPNs can cause fatigue as well as the MPN.
I have been on Besremi for 3 months as my first drug for PV. Like you I was having phlebotomies about once every 6 weeks to control hct. I decided to try Besremi because I felt five years of phlebotomies were taking its toll and my iron was low and platelets extremely high. I won’t bore you with the details but so far so good on Besremi and I have not regretted giving a try. My current dose is 250 mcgs after starting at 100 and I have had 6 doses. Of course everyone is different so discuss with your doc and read the available information regarding pros and cons. Best of luck
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