Besremi Question: Hello all, I have been on... - MPN Voice

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Besremi Question

josup26 profile image
8 Replies

Hello all,

I have been on Besremi therapy for a year and 3 months. My numbers have shown nice improvement. I started at a burden of 78% and down 32% all other blood work staying steady. My question is does anyone experience muscle and bone pain? My hope is having gone down from injection every 2 weeks down to once a month I may see an improvement.

Wishing everyone a Happy Thanksgiving.

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josup26
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8 Replies
hunter5582 profile image
hunter5582

I have not experienced that adverse effect on Besremi. Unfortunately, musculoskeletal pain is a potential Besremi adverse effect. Typically, adverse effects are dose dependant. It seems reasonable to expect a reduction on any adverse effect you are experiencing.

Congratulations of the reduction in VAF. Mine was down to 9% from 38% last year at this time. I am about to repeat the test. Hoping to see it even lower.

All the best.

josup26 profile image
josup26 in reply to hunter5582

Thank you Hunter and congratulations keep up the good work! Yes Hoping to feel better with the reduction of Besremi. I realize it can also be the PV as well. Just have to stay strong and keep going.

All the best to you.

monarch5000 profile image
monarch5000

Yes I experienced muscle and joint pain on Besremi. I walked around slowly like I had aged 10 years. I also experiened eyes so dry I would wake up in the morning with them partially glued shut. I didn't have these issues when I was previously on Pegasys interferon so I went back to Pegasys.

josup26 profile image
josup26 in reply to monarch5000

Thank you for your response. I will be seeing my Hemo next week to see what course we shall take. Thank you hope you feel better.

Anag profile image
Anag

I have been on it for 13 months. I was doing very well, the thrombocytes going down slowly. As soon as it really kicked in and started working properly, my nervous system has been responding increasingly. Firstly, I had brain inflammation and now neck shoulders, arms hands left foot have tingling in numbing also pain and weakness. I reduced from 200 µg to 125 µg two weeks ago. I am worried because the pain has usually gone away before the next injection. Put my next injections tomorrow and I’m still hurting. I have a blood test today and that will be decisive as to how we proceed with the treatment or without it. My biggest fear is that I cannot handle hydroxyurea and anagrelide has caused me mitral valve insufficiency. I have been on a fantastic anti-inflammatory diet for the past six years that changed my health around completely. I take supplements that balance out any deficiencies in my body. The Besremi has not at all affected my Hashimoto thyroiditis, nor have I had any clips of depression, although I had depression is my whole life, until the time where I started my autoimmune Paleo diet.

I was diagnosed with brain stem inflammation, which I also have in the middle part of my brain. I was given electrostimulation therapy and that made a huge positive impact on my brain function and memory. I am contemplating using this therapy again for another three weeks.

oh yes, and I’ve had muscular skeletal pain or sensitivity on every joint where I’ve had an accident in my life or operation. But it was always usually for a few days in the first week after injection that included knees hip shoulder I feel grinding inside the joints.

I also had a skin rash on my neck check and inner elbows, but only in the first month and a half of therapy. In the first half year, I had nervousness, agitation and a bit of confusion in the first for five days after the injection. This decreased as time went on. It also causes me to run to the toilet to pee, even when I don’t have a lot. A tiny bit of incontinence. That started about four months ago, also in the first week after injection. I can only hope and pray that what I have now will also decrease.

all the best to you!

AnBee profile image
AnBee in reply to Anag

Hi Anag, have you tried Pegasys? Is it an available where you are? Some people who have side effects on Besremi can often tolerate Pegasys.

Anag profile image
Anag in reply to AnBee

Good Question. I haven’t. Right now I’m in the hospital-neuro dept. It’s time find out what I have. The symptoms are not going away. I will not continue Besremi. I decided that. There’s a concern that I might have developed chronic inflammatory demyelinating polyneuropathy (CIDP). Some people who are on interferon alfa to be have developed that in the past, it’s rare it happens to people who are taking the medications or have toxicities. I have mercury and aluminium toxicity and I start the detoxification when I started the best Remi a year ago. This would fit a picture.Apparently when the Intaferon is stopped the symptoms go away for most. The patients have started the interferon a month or so later had symptoms again.

my commonsense is telling me to take the next six months to detox my body as much as possible from the heavy metals and also treat any parasitic or other infections, and then give Besremi for Pegasus I try.

thanks for the tip. I will be discussing that with my NPN specialist. 🙂 alll the best. Anag

josup26 profile image
josup26

I thank you so much for your response. I hope you continue on a positive path.

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