Ropeginterferon

[Bears23]

Those of you that are on ropeginterferon have you noticed any improvements on your symptoms? Which symptoms have you seen the most improvements? Thanks in advance.

[hunter5582]

I just switched from Pegasys to Besremi about a month ago. Prior to the PEG I was on phlebotomy-only. The iron deficiency was causing problems, including fatigue, difficulty concentrating, alopecia, and increased thrombocytosis. Once my iron levels started to recover while on PEG, the fatigue/concentration got better and thrombocytosis is now well controlled. HCT has been at target as well. Thus far I have found no real difference in efficacy and side effects from PEG to ropeg. The only AE I have encountered has been mild lymphopenia.

Hope that helps.

[Bears23 in reply to hunter5582]

Thanks for reply. Started noticing vision disturbances (feels like lack of blood flow, best way I can describe it), a little dizziness when moving head around, not all the time, but most days. Recent iron count elevated, not sure this is related. Doctor (MPN Specialist) has discussed ropeginterferon (low dose) to see if this improves symptoms.

[hunter5582 in reply to Bears23]

Vision disturbances can ether be ocular/retina-based or vision/brain-based. Both can be MPN-related issues. Vision disturbances in one eye usually = retinal. Vision disturbances in both usually = brain-based. Hope you get it sorted ASAP. FYI - ropeg is a great option if you decide to go for the meds. is working well for me.

[Bears23 in reply to hunter5582]

Thanks so much! Have an ophthalmologist appt scheduled. Considering starting meds, glad to here you are having success with the meds. Best of luck to you and thanks again!

[EPguy in reply to Bears23]

Retinal issues are a listed risk for Besremi:

accessdata.fda.gov/drugsatf...

<<Ophthalmologic toxicity has occurred in patients receiving interferon alfa products, including BESREMi>>

Good idea to get the exam. You should discuss regular close follow ups if there are any eye concerns.

I've just started Bes, 50mcg tolerance test dosing. I had flu like symptoms the next day, that is considered normal so far.

[Bears23 in reply to EPguy]

Thanks so much. I will discuss with eye Dr at next appt.

[mfh7]

Been on Besremi for one week so difficult to say this early. However my platelets have already gone down from 1500 to 1100 in just one week. Waiting to see the effect on hct but that could take a while. No known side effects so far but again only one dose of 100 mcg so far. I am considered low risk pv since 55 yrs old without underlying health conditions but Besremi was recommended because the 5 years of phlebotomy and severe iron deficiency was affecting quality of life issues. Also the possibility of remission was a big selling point.

[Bears23 in reply to mfh7]

Thanks and best of luck.

[SoledadBarcelona]

I started six month ago with 100mcg. Everything here is getting better and better. My symtons were in my extremities, lack of energy and fatigue.

[Bears23 in reply to SoledadBarcelona]

Thanks, dealing with fatigue myself, more and more often.

[SoledadBarcelona in reply to Bears23]

But I have Hashimoto's disease which provoques fatigue too. It affects to mitochondrial issues.

[Bears23 in reply to SoledadBarcelona]

I understand have auto immune and auto inflammatory issues myself.

[SoledadBarcelona in reply to Bears23]

Welcome to the club!. What is your lifestyle: diet, exercise, suplementation, meditation etc

[Bears23 in reply to SoledadBarcelona]

Yup! Diet, exercise, immune suppressant medication, etc.

[SoledadBarcelona in reply to Bears23]

Choose Besremi. This is good for us.

[SoledadBarcelona in reply to Bears23]

Perfect! Being careful with the diet. This is an enormoues help

[EPguy in reply to SoledadBarcelona]

I have the extremities also. (tingling, numbness). Energy is ok but malaise and full headedness are problems. NAC supplement seems to help the tingling but not the others so far. I do hope the Besremi helps. My 2nd small dose is tonight as I switch from HU.

[Elizka]

How long have you been taking it?

[Bears23 in reply to Elizka]

Considering it now. Fatigue and visual disturbances are becoming more frequent. I know we are all different, but just trying to see if meds helped people with these symptoms.

[marlenablue]

I just took my second dose of Besremi last Sunday. The only side effect so far is an injection site reaction. I see my doctor next week for blood work so I don't know yet if it is having an effect at this point. I am excited and grateful to find out.

[hunter5582]

Glad to hear that you were able to access Besremi and are tolerating it well. FYI - the clinicians guide from PharmaEssentia recommends a CBC every two weeks during the titration phase. This allows for close monitoring and dose adjustment until you reach the right level. My docs are also doing a CMP to closely monitor kidney/liver function. besremihcp.com/pdf/BESREMI-...

I have been very pleased with my response to the IFNs, Pegasys then Besremi. Wishing you success as well.