Hello Family,
I am on my 8th week of pegasys treatment which I seem to be tolerating well @ 45mcg.
I am also in the process of seen an MPN Specialist in few weeks who has ordered bloods tests including LDH . I had a BMB 8 weeks ago and waiting results for same which is nerve wrecking.
Do I have any reason to be concerned 😟 🥹.
Is this a routine test while on treatment?
I am losing my mind .
try not to worry, there are a few positives to think about instead.
Your tolerating Peg well, fantastic
LDH and BMB are routine tests and if LDH is elevated Peg may reduce it
Getting a BMB and seeing a MPN expert let’s you know more about your MPN and the expert should be able to point you and your local Haem in the right direction.
So with the info you have provided, there are a lot of positives
I am still getting monthly labs while taking Hydroxyurea for ET JAK2.
That sounds like a totally routine set of tests. Very much the norm for managing a MPN. Glad to hear you are tolerating the PEG well. That is really good news.
Mindus Lostus is a most annoying aspect of managing a MPN. It can be managed effectively in a variety of ways. Understanding that MPN management is a long-term prospect helps. So does engaging your sense of humor. Suggest you find your mind and stick it back in your noggin where it belongs. The judicious use of mental glue and or staples may be indicated. 😜
Hang in there my friend. It sounds like you are on a good trajectory in managing the MPN.
Hello Hunter, Found my pal and back where she belongs 🤣🤣🤣. . She’s behaving now after I’ve threatened with glue n staples or worse sutures.
I am also happy to report the last 2 weeks my fatigue has been bearable, I have had moments I felt like a “normal human being “.
My platelets count going down too. I am happy to be seen a MPN specialist in few weeks . Thanks for info seems like i am on the right track.
👍👍
Hi Afya23,
Well, I'm sorry that you have joined our rather exclusive [rare dz] club, but happy that you are luck enough to be on great treatment for it. Another facet of your good luck is that you didn't have to wait around for an MPN specialist to get started on INF!
I started out with a local Hem/Onc MD to whom my PCP had referred me, but she freely admitted that she had no up-to-date, or even recent experience in treating MPN's or in prescribing INF's.
Long story shortened, I found an MPN-specialty MD and now about 7 months later, I have up-titrated to 500 mcg every other week, and we are waiting to see what the effects will be and when they are going to kick in.
Glad to hear that your numbers are already responding.
If your LDH [or the other liver enzyme tests] is/are somewhat higher then normal, don't panic- I'm not sure if it was Hunter or our other sage here- EPguy, who has posted about the fact that they are frequently somewhat elevated in the earlier stages of treatment, but it's most often a transient blip, and doesn't [often] require stopping treatment- especially if it's working.
Again, welcome, and best regards, health, luck, etc....
PA
PS: My blood levels- including CBC and CMP w/ LDH are being tested every other week currently- and it's getting expensive, even with good medical insurance...
Hey PhysAssist
First I am honoured to be a member club , it’s given me so much hope . Thanks for you input , its very informative and I am learning every day. I first consulted google to find out what LDH was so you can imagine the shock
I also started my Local Haema Team who started me on IFN and so far so good . I can’t complain of any side effect s yet-touch wood. I am also grateful for Our NHS. I don’t take it fr granted that I don’t have to worry about the treatment, tests etc.
I thank my MPN Nurse Specialist for referring me to MPN MD Specialist who I am looking forward journeying with Her. And hopefully I can have some normalcy in my life .. it’s tough dealing with the fatigue especially and been a Young Parent.
Thanks once again and all the best/luck too.
Hey back atcha!
Here some very specific information regarding liver enzyme increases related to Besremi, but which is somewhat generalizable to Pegasys as well.
I did find it interesting that none of these includes LDH as a parameter.
Dosage Modifications
Liver enzyme elevations*
>5x to ≤20x ULN
Decrease dose by 50 mcg; if no improvement, continue decreasing at biweekly intervals until ALT/AST <3x ULN if baseline was normal; 3x baseline if baseline was abnormal, and gamma-glutamyl transferase (GGT) recovers to <2.5x ULN if baseline was normal; or 2.5x baseline if baseline was abnormal
If interrupted dose is 50 mcg, hold treatment until recovery
>20x ULN
Interrupt treatment until ALT/AST <3x ULN if baseline was normal or 1.5x baseline if baseline was abnormal, and GGT <2.5x ULN if baseline was normal or 2x baseline if baseline was abnormal
Consider permanent discontinuation if toxicity persists after 4 dose modifications
Elevated liver enzymes with elevated bilirubin, or other evidence of hepatic decompensation
Any increase above baseline: Interrupt treatment until recovery; restart at 50 mcg lower than interrupted dose
If interrupted dose is 50 mcg, hold treatment until recovery
Consider permanent discontinuation if toxicity persists after 4 dose modifications
*Liver enzymes include: ALP (alkaline phosphatase), ALT (alanine transaminase), AST (aspartate aminotransferase), and gamma-glutamyl tansferase (GGT). These are different enzymes made by the liver.
Lactate dehydrogenase (LD), is an enzyme found in most of the body's cells. LD is released into the blood when cells have been damaged by disease or injury. It is commonly elevated in liver damage or disease.
From: reference.medscape.com/drug...
Also:
HIGHLIGHTS OF PRESCRIBING INFORMATION
These highlights do not include all the information needed to use BESREMi safely and effectively. See full prescribing information for BESREMi.
5.11 Hepatotoxicity
Hepatotoxicity has occurred in patients receiving interferon alfa products, including BESREMi. These toxicities may include increases in serum ALT, AST, GGT and bilirubin. BESREMi is contraindicated in patients with moderate (Child-Pugh B) or severe (Child-Pugh C) hepatic impairment [see Contraindications (4)].
Increases in serum ALT ≥3 times the upper limit of normal (ULN), AST ≥3 times the ULN, GGT ≥3 times the ULN [Upper Limits of Normal], and bilirubin >2 times the ULN have been observed in patients treated with BESREMi.
In the clinical development program of BESREMi, 36 patients (20%) experienced liver enzyme elevations, 33 of whom had elevations of 1.25-5x ULN. Patients were able to resume BESREMi upon resolution of liver enzyme elevations. Liver enzyme elevations have also been reported in patients after long-term BESREMi therapy.
Monitor liver enzymes and hepatic function at baseline and during BESREMi treatment. Reduce BESREMi dosage by 50 mcg for increased AST/ALT/GGT then monitor AST/ALT/GGT weekly until the values return to baseline or grade 1 (ALT and AST < 3 x ULN if baseline was normal; 1.5 - 3 x baseline if baseline was abnormal, and GGT <2.5 x ULN if baseline was normal; 2 - 2.5 x baseline if baseline was abnormal) [see Dosage and Administration (2.3)].
If toxicity does not improve, continue decreasing the BESREMi dose at biweekly intervals until recovery to grade 1.
Hold if AST/ALT/GGT > 20 x ULN and consider permanent discontinuation if increased liver enzyme levels persist after four dose-reductions. Discontinue BESREMi in patients who develop evidence of hepatic decompensation (characterized by jaundice, ascites, hepatic encephalopathy, hepatorenal syndrome or variceal hemorrhage) during treatment [see Use in Specific Populations (8.7)].
From: accessdata.fda.gov/drugsatf...
This is the Pegasys listing from the FDA:
2.6 Liver Function
Adult Patients
If ALT increases are progressive despite dose reduction or accompanied by increased bilirubin or evidence of hepatic decompensation, therapy should be immediately discontinued.
In chronic hepatitis C patients with progressive ALT increases above baseline values, the dose of PEGASYS should be reduced to 135 mcg and more frequent monitoring of liver function should be performed. After PEGASYS dose reduction or withholding, therapy can be resumed after ALT flares subside.
In chronic hepatitis B patients with elevations in ALT (greater than 5 x ULN), more frequent monitoring of liver function should be performed and consideration should be given to either reducing the dose of PEGASYS to 135 mcg or temporarily discontinuing treatment. After PEGASYS dose reduction or withholding, therapy can be resumed after ALT flares subside.
In adult patients with persistent, severe (ALT greater than 10 times above the upper limit of normal) hepatitis B flares, consideration should be given to discontinuation of treatment.
Also interestingly, I could not find any announcement that Pegasys was FDA-approved for treatment of MPN's- what kept popping up was the Besremi approval announcements. Not that I think there is any question of efficacy- in fact, if I do not eventually get enough [any?] treatment response from Besremi, I'm planning to push for a Pegasys-trial instead of acquiescing to something I have less faith in to keep my disease from progressing, or that I have more concerns about possible [oncological] side-effects. from [HU, e.g.].
Sorry it's such a long post!
PA
Pegasys routinely lowers LDH and maintains it within normal levels if your MPN disease is not too aggressive or advanced. However, your LDH might actually rise during the first 6 months or so of being on Pegasys. So you shouldn't bee too alarmed if your LDH is moderately elevated above normal after being on Pegasys for only 2 months.
Thanks Monarch5000
Your information is very helpful. My mind is settled now . Will keep a track on it. Thanks once again
no I have a range of different bloods done at various times. He/she is just monitoring your organs.
My mpn specialist always orders a LDH. I see him every 4 months. Best
I have post ET mylofibrosis and my LDH is tested monthly with bloodwork. It has been as high as 2000. My lab changed the way it is recorded and then was 865, climbing again. But my hematologist says basically it is saying the disease is active.
Hey Thankfulone
Thanks for your feedback. I don’t even know if I have had a baseline one thou mine recently diagnosed few months ago . Will be keen to know more now that I am transitioning to an MPN Specialist.
My MPN specialist does not worry about LDH. I think it needs to be considered in context of the other inflammation markers.
But some experts do consider it more heavily. Mine started at ~420 and declined on HU and held on IFN, still near top of range.
Recently diagnosed with ET
Diagnosed with ET
Newly Diagnosed - ET
ET with constant silent migrain symptoms
Clinical Trial Exceed ET
