Besremi side effects?

[Treeah]

Hi, I have hade PCV for 40 years. I have only treated it with phlebotomies and alternative diet and practices. Due to declining hgb and very part spleen, I decided to try Besremi. I just completed my 6th dose of Besremi, last dose was 150 q 2 weeks. I have had symptoms of long bone pain and bone pain in toes and fingers. Some have suggested, this is Besremi working on my bone marrow but my dr doesn’t know for sure. Pharma says 40% of people on Besremi get bone pain. If you have had this symptom, did it go away for you? Other symptoms include a sore throat, insomnia, occasional headache. Thank you for your comments.

[Treeah]

It should have stated above “very large spleen”

[Roxanne22]

Hi Treeah i think it may be worth discussing your dose. Like you i took the natural practices phleb route for 7 years which was then altered after discovery of high AB, but they started me v low, due to my system being highly sensitive and not having had any(hardly) medications since teens, they knew i would need to start low and so 4 mnth in, Iam still only 50 mcg per 2 wks. I may inc to 100mcg soon. So far no tangible side effects other than inc itch after bathing. The cell counts are coming down nicely though. Wishing you well om your continued path and my advice would be to persevere with this, altering dose or another drug, to support your natural health practices. Sending you healing vibes xx

[Treeah in reply to Roxanne22]

Thank you for your response Roxanne. Could you help me recall what high AB is? I also am very sensitive and was started slow on Besremi. It is believed I have mylofibrosis secondary to PCV. I have never allowed a bone biopsy, but symptoms and tests indicate some mylofibrosis. However, I have not had this level of bone pain until I started Besremi. I will discuss dose with my dr, especially if it continues to increase. My platelets are down but hct is still rising. My dr is hoping to stop mylofibrosis from advancing. Thank you for your encouragement and healing energy. I send the same back to you for continued improvement.

[skakulec2 in reply to Treeah]

As I know, maybe I am wrong, if you have myelofibrosis, you will be anemic as RBC will be decreasing.

[Treeah in reply to skakulec2]

I don’t know that much about myelofibrosis. My hgb wavers between 10 and 12 the past few years after being high for decades and my RBC has been high for years.

[skakulec2 in reply to Treeah]

you said that you HCT is rising, how is that possible your HGB to decrease and HCT rise ? maybe if your RBC are empty of HGB. that is measured by MCH and MCHC params in the blood test. are they in normal range ?

[DougyW]

Hi Treeah. There are 2 approaches with Interferon treatment. Low & Slow which takes a while to work but less likely to produce side-effects and hit it hard, works quicker but more likely to produce a reaction. Sounds like you Haemologist has hit it hard. Might be worth having a short breaknl then going low and slow.

[Treeah in reply to DougyW]

Thank you for your suggestion Dougy. I plan to discuss with my Dr on our next visit.

[Scaredy_cat]

Is this something that can progress to myelofibrosis? Would jakafi be any good?

[Joey1025 in reply to Scaredy_cat]

Bone pain is quite common among PV patients. Please correct me if I am wrong but I do not remember seeing doctors suggesting that bone pain is an indicator of disease progression...however I heard that interferon may control the disease and may be able to prevent progression, more evidences required to establish a firmer answer though.

[Treeah in reply to Joey1025]

Joey, 40 years of PCV has brought me a little bone pain, nothing like I have experienced recently. I am hoping the interferon brings many miracles to me including cessation of phlebotomies and mylofibrosis progression.

[Treeah in reply to Scaredy_cat]

It is believed I have mylofibrisis. The hope is Besremi will slow it down.

[nyelynndesigns]

Hi Treeah,

DougyW mentioned low and slow above. I've had PVera for about 8 years and very large spleen. I've failed on every drug. I'm doing the very low and slow on Besremi (25mcg monthly). There's always the possiblity to ask your doctor to reduce the dose to see if it helps your side effects. If they refuse, you get to choose your healthcare provider. The best quote I've ever been told by a doctor (current doctor) " The body doesn't read the book". I hope Besremi continues to work for you and your side effects get better with a dose adjustment.

[Treeah in reply to nyelynndesigns]

Thank you for your comments and you wishes.

[harev]

I am on Besremi and have all those side effects but also shortness of breath and tight chest. Now spleen issues. I have been on it for 9 months. I had less symptoms on a higher dose 250. When he brought it down to 200 symptoms got worse.

[Treeah in reply to harev]

I believe I am still in process of finding that sweet spot of dosage for me. Thank you for sharing

[Pogm]

As most people have said already, "low and slow" is the best way to avoid side effects. I jumped from 50 mcg to 100mcg several month ago and had absolutely terrible headaches and erthromylagia. I titrated down to 75mcg and did very well and now at 100mcg without a problem. Be your own advocate, always. Good luck going forward. It is a very potent yet important drug to help slow possible progression of the disease. Don't give up!!

[Pogm in reply to Pogm]

Hello again, If you suffer from aquagenic pruritis, ask if a small dosevof Jakafi can be added . I currently am on the combination and my itching is practically resolved.

[Treeah in reply to Pogm]

Thank you for sharing your experiences.

[josup26]

Hi there,

Hang in there I had bone pain in the beginning and some headaches slowly those side affects went away. I have had great results on Besremi and over all it's been a wonderful choice. My jak2 has dropped to 6% and my number are holding. hope this was helpful.

[Treeah]

Josip, very helpful. Would you mind sharing how long you have been on Besremi and what dose currently.