Hello to all. I’m new to posting but have so enjoyed reading others questions and comments. I have had PV since 2018. Started taking Hydrea right away and last year started pegasys. My counts were well controlled but some side effects. I’ve just started besremi but have been concerned about my kidneys (GFR now 45, creatinine 1.22)
Anyone out there in PV world had this issue with besremi? I’d like to stay on besremi but not at the cost of damaging my kidneys. Thanks for any input!
Prior to starting on Pegasys I was showing signs of kidney disease developing. The eGFR had dropped below 60 on a few occasions and occasional other wonky numbers. I received a very thorough evaluation by a nephrologist. Fortunately, I did not have kidney disease. As the kidneys age they can become weaker. The simple solution was to ensure that I drink more water. While I thought I had been drinking plenty, my numbers returned to the 70s+ when I made it a point to drink 64oz of water every day in addition to the non-caffeinated coffees and teas I also drink.
You are are correct that drugs like Besremi and hydroxyurea can be nephrotoxic. That is why good hydration is so important when on one of these meds. There is no downside to ensuring you drink at least 64oz of water every day. In fact, anyone with a MPN should pay attention to good hydration. Actually, everyone should do that.
This definitely needs follow up with your care team. It may b an easily resolved issue but you need a clear answer about what is going on.
thank you so much for your reply. It was very helpful. I do drink a lot of water but perhaps more would be better. I will for sure bring the issue up with my care team. It may be time to have my kidney function evaluated.
I'm doing ok on Besremi (140mcg) so far in liver and kidney and was ok also on HU. Was your GFR ok on PEG and changed suddenly when starting Bes? What dose have you taken for each?
I’m on 50mcg of besremi. I was on HU the first 3 years after diagnosis then went to pegasys (45 mcg every three weeks) My GFR started to decline at the end of pegasys somewhat but it has been a steady decline since besremi. I’m just not sure if it’s my body adjusting to the med. and I should wait it out. I have read the insert that comes with besremi and certainly they can affect the kidneys as can many meds. I see my Hemo/Onc at the end of the month so will certainly discuss the whole kidney issue with him.
I have had no other side effect with besremi and really feel well, so I hope I can continue with it. My main complaint about pegasys was fatigue and digestive issues so was anxious to try besremi.
Thanks so much for your reply and hope your PV journey with besremi continues to be a smooth one.
That is very a small dose of both IFNs. Are you getting CHR (bloods HCT, PLT and WBC in range)? Or is Dr planning increases?
In this reference there is a minimum of 30 for GFR:
"No dose adjustment is necessary in patients with estimated glomerular filtration rate (eGFR) ≥30 mL/min"
So you're not there, but of course it's best to address it before it gets there. There is an adjustment period for most of us, some have seen liver numbers (AST, ALT) stabilize after time. These can rise on IFN.
It might be worth discussing with a nephrologist if there remains uncertainty on the IFN cause. I also agree with Hunter on the water, I try to keep it going in and out but never enough.
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I can't say my journey is all smooth, my numbers are very good but I often have a heavy symptom burden. I can no longer do long travel. I'm hoping when it goes to once per month things will get easier.
Tied Besremi as the first treatment for my PV. Prior was just using aspirin and phlebotomy. Started Besremi with 40mg dose and very gradually increasing. By the 6th dose started experiencing edema in feet. Immediately stopped Besremi but edema continued progressing for the next 5 months, along with progressing kidney failure and increasing fluid retention. Landed in hospital on two occasions, each for one week, for infusions and injections to force fluid retention into vessels. Bloated up with inter-tissue fluid that was 30% of my normal body weight!! A few specialists warned of possible complete kidney failure. At about month 5 I experienced a very slight decline in urine albumin (mine hit a peak of 7,000 versus standard range of <= 120). Was scheduled for kidney biopsy but delayed given my slight improvement. Over the next 2 months my kidneys slowly recovered and all related counts slowly returned to normal. Neurologist confirmed similar patient cases using Besremi. We are all different. I was one of the unfortunate patients whose biology had extreme adverse reaction to Besremi. So, no more interferon for me. Best of luck.
Glad to hear your condition is now stable, good news.
I was unclear on albumin vs protein. From what I can find they are usually the same thing for this purpose. My recent urine test has no Albumin but listed only Protein. So if anyone is not sure I think this might help.
Was that a neurologist or a nephrologist? Should we consult a neurologist if we have concerns on our tests with Besremi?
Started Besremi
How long for Besremi to work?
