Four months in, and Pegasys is not working. I started low and slow 4 months ago and worked up to my current 90 mcg/week without any side effects. My platelet count has been steadily rising from 387 (after 6 months on HU) to the current 603 and my comprehensive metabolic panel shows slightly elevated ALT 37 and AST 39. Hgb/Hct are also steadily rising from 13.8/41 to 15.1/46. My diagnosis is ET JAK-2 but I wonder if I am flirting with PV.
So Pegasys not working and liver showing early signs of stress. I do not like the trend. Ouch! Do I continue? Will be meeting with hematology on Thursday.
PS. I already do all the best practice stuff - exercise, anti-inflammatory diet, no alcohol, etc…
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It does take the IFNs longer for some than others to reach the treatment goal. Suggest not giving up just yet.
I would not be particularly concerned about the minor raise in LFTs at this point. That is really just to be expected. With Besremi, no change in treatment is recommended until 5x/Upper Limit of Normal. I reached 3x/ULN and we did not make a change in dose. I did start taking a milk thistle extract and my LFTs returned to normal.
Suggest you review your MPN status with your hematology team. WHO PV criteria for women = Hemoglobin > 16.0 g/dL or Hematocrit > 48%. While you do not meet diagnostic criteria for PV, it is unclear what your HGB/HCT would be if you were not on PEG. You are asking a reasonable question about potential PV status but would certainly not conclude that is what is going on.
Please do let us know what you learn and how you get on.
Thank you, Hunter. I am inclined to “stay the course”, and give the Pegasys more time to work, even though it is scary knowing that the trend is not optimal. However, I am encouraged that others have experienced the same slow response to Pegasys as me. I really don’t want to go back to Hydroxyurea.
I’ll look into Milk Thistle. How much did you take?
I am taking 500mg/day (2 caps) of Silymarin (Milk Thistle Extract) made by Pure Encapsulations. This is the brand recommended by my Integrative Medicine Specialist.
It has certainly worked for me. Note that I review all supplements I take with my Integrative Medicine Specialist. I also let the rest of my care team know about anything I am taking. Also worth noting that supplements are poorly regulated in the USA. It is important to stick to reliable brands.
My MPN Specialist was very interested on my response to the Milk Thistle. Elevation in LFTs is common to many of her patients.
My numbers went up for a few months when I started Pegasys before they started to come down. I have stayed on a 45mcg dose and after 10 months my platelets came into the normal range, so don't give up yet. My liver counts are still above normal even after 21 months on Pegasys, but my haematologist is fine with that.
90 mcgs per week is quite a high dose for beginners. Your liver function may not be handling that dose. From the time I went on to Pegasys the current haematologist then tried to ramp me up very quickly to 180mcgs per week. This was about 3 years ago. Severe side effects had. Then my MPN specialist took over and knocked me down to 45mcgs every 3 weeks. This dosage is a very common one for us. Been on that for the last 2 1/2 years which had been working beautifully started to head in the right direction from about 6 months on. Prior to that all Platelets etc kept rising.
Suggest a discussion with dosages and realistic timelines to see effect
Hi AnBee, Actually, I started at 45mcg every other week, then 45 every week, then 67.5 and now 90. It’s been a 4 month slow gradual increase, and I’ve had no side effects with this slow gradual dose increase. I had just hoped to see some leveling off or decrease of the platelets, but it sounds like I need to be more patient. I was on HU prior and my counts were all in normal range when I started the Pegasys.
I commenced on 90mg per week...but due to being overweight I believe. I have stayed on the same dose since. It took over a year for blood counts to reduce significantly, and in the meantime, I required the occasional venesection until this point was reached x
it also took me almost a year and I am so happy that I stayed with it. My platelets went from 500s gradually into the 800s, but then recently they went down rather quickly and I am in the low 500s. The important thing to me is I feel great with Pegasys. No side effects!!! I previously suffered on the hydroxy. I started Pegasys at 25 and slowly worked up to 50 where I remain. This is taken every 2 weeks. Wishing you great results!!!!
Hi Island-Lady, it’s heartwarming and encouraging to hear that you (like many others) have been successful with the low-slow Pegasys approach. Thanks for sharing your story with me!
Same here. Took 9 months to work on 90mcg a week with occasional venesection. Now completely stable at hct .40. ALT elevated and neutrophils down but that is expected. Being a bit more susceptible to infection a small price to pay. Stick with it. It will work.
Similar story here - started out too high at 180 every 2 weeks - had almost immediate response in counts but liver didn't like that dose so had backed off (completely for 2 months) and stabilized at 90 mcg/every 2 weeks...it has taken almost a year at this dose for my platelets to finally drop to about 488 (from a high pre cyto-reduction of 1,400) - so almost WNL - all other blood work good...so it has taken a while but glad I am sticking with it...
I also take milk thistle - same brand and dose as Hunter - checked with my MPN specialist and GP prior - both said they did not have hard evidence for taking it but nothing against me trying..my liver function readings have been normal (my MPN specialist doesn't know if this is thanks to the milk thistle or just my body adjusting to the interferon..I'll take it either way..)
it’s amazing to hear that it has taken about a year for many to get stabilized on Pegasys. I am going to stick with it and discuss Milk Thistle with the hematologist. Right now the ALT/AST are just mildly elevated. Thank you for replying.
I've been on low dose 45 micro grams of peg interveron since 10 feb 2023 . I have PV My Hematocrit is still creeping up so I've been for a venesection in may and again in June . My consultant increased me to 90 micro grams every two weeks but did say I may need to go to weekly injections to bring it down . I'm reviewed again on the 28 July . When I first started on low dose peg it only kept my levels the same. But recently was creeping back up .
I was hoping for better results but I've been told it can take a long time to work .
Dr Garg prescribed blood thinner injections for my flight to Cyprus this Wednesday and one to take on my way back .
I really hope I respond better to the 90 dose because I don't really want to go to weekly injections but obviously if that's what I need I will .
The nurse did say 180 micrograms is the maximum dose for peg so I don't want to give up just yet .
My side effects are aching painful joints and tiredness
Thank you for telling me that it’s been slow for you too. I’m grateful that I have had no side effects except this new mildly elevated liver enzyme. I hope your counts stabilize too.
you’ve had a lot of good views already, the only thing I would add is keep close eye on Hct, if PV or Jak2+ ve it should be kept under 45 for males and some docs say 43 for female, as others have said Peg can take a long time to work optimally so you could venisect in the meantime. If you don’t have other health issues or symptoms most haems wouldn’t be concerned about your platelets at 600 or current liver labs.
Peg didn’t kick in for me for at least a year but I was storing the injections at the bottom draw of the fridge which is colder than the rest of the fridge. I invested in some really good thermometers and found it was 0 degrees in there! Peg should be kept between 2 and 8 degrees. I would suggest having a talk to your haematologist and sticking it out a bit longer at 65mcg possibly to help your liver and body adjust. I couldn’t tolerate 90mcg comfortably. You can always add hydroxy in with peg to see if that helps. My haematologist wanted me to do that. It might be the bridge you need till your body settles down. Good luck and let us know how you get on.
I hadn’t thought about adding HU. I’ll see what hematology suggests next week. I’d rather not go back on HU. Thanks for the support and encouragement to stay the course.
It could take 1-2 years and a high enough dose to work. It took a year for my itching and spleen to resolve. My Mcv took about two years to return to normal.
I did 4 months of 90mcg of pegasys per week with no movement in my platelets and still required a phlebotomy. I did 135mcg for only 4 weeks and up to 180mcg for only 4 weeks then returned to 90/week.
The bloods started moving at 135 but the 180 dose for the win. Platelets dropped very quickly and have not required any more phlebotomy.
I still take 90/week.
Female 54 PV jak2. Taking pegasys total 18 months
Some people go light and slow and bloods react, others need the high dose to get the ball rolling. 😎
I am 71, was just diagnosed in Sept 2022, from routine lab work. Took HU for 6 months with good response, minimal side effects. But since I’ve had several BCC, I wanted to switch to Pegasys. Been on Peg for 4 months. Live in Seattle and get care through UW Medical Center (big teaching hospital). Have talked with my hematologist about why ET not PV diagnosis., since my Hgb/Hct were also slightly high at time of diagnosis. I am going to pursue this question again, but in reality, the medication treatment options are the same and with the HU my Hct was never in a range to need venisection. Not had a bone marrow biopsy, which could clarify diagnosis. I tend to choose conservative medical options, but may agree to BMB if the numbers don’t turn around within a few months.
I was diagnosed with a BMB with ET but only a 5 months later I required a first of 5 phlebotomy to bring me back into range. The MPN specialist I had just started to see, started them because she said likely masked PV. Started pegasys a few months after that.
BMB is not a big deal and quite a good idea to get a baseline one so you can compare to future ones, they are also best way to give accurate diagnosis.
I'm not a doctor, but if I were in your shoes I'd either stay at 90 mcg Pegasys or try a slightly higher dose (110 mcg) a couple months from now if platelets continue to rise. A $50 Erythropoietin blood test could help determine if you have PV. A low or low normal test result of 2-5 would strongly suggest PV.
I took the advice of others on this site and I moved from a hematologist to a specialist of MPN in Oncology for Blood Cancers. I was diagnosed by a hematologist through bloodwork and a BMB with ET and the presence of the JAK2 mutation. The hematologist prescribed hydroxyurea to lower my platelets. Follow up visit was scheduled for 6 months out.
Since moving to the oncologist, he has performed additional blood tests, determined that I have had possible PV since 2013 (based on other blood test numbers from past blood work) and I have had multiple blood draws and doctor appointments to make sure my dosage is correct. I feel far more confident in this type of care than I did with an hematologist. (although I was much appreciative of the original diagnosis)
My advice.....if you have any hesitancy regarding diagnosis and/or follow up, then you may want to consider moving to a specialist. Regardless, I hope you find the answers you are looking for.
I have a tea and I am on Besremi since last October. It has started working extremely slowly with me, even though we have raised the dosage. My doctor also said that for some people it takes longer and more. If you are doing a lot for your health by eating, inflammatory, etc. as I am, could it be that by keeping our immune system stable is actually preventing the interferons from working more efficiently?! No one has been able to answer this for me. I haven’t been able to completely stop my anagrelide. I have only stopped it by half and must remain on two tablets a day for a while until the Besremi is really working properly. I’m curious what your MPN specialist will say. Perhaps you can ask them about different immune systems and efficiency of Pegasus/Besremi. 🙂 keep doing the right thing for your body and to give the medication time to work properly. 603 is not that high. Stay well. Anag
Hi Anag, It is curious how some respond quickly and others slowly. I am a very healthy person, follow anti-inflammatory diet and exercise regularly. I generally feel very well and have been fortunate to not have much in the way of symptoms of the MPN or side effects to the medications. Interesting that you wonder if a strong immune system might make it harder for the IFN to work. We will probably never know, but curious to ponder. Thanks for sharing.
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