Morning everyone , I wondered if anyone has experienced a slow journey in platelet reduction on peg interferon alpha like me….. I’m 56, fit and healthy with an active lifestyle. I have ET triple negative and take aspirin daily, diagnosed in April 2020. From Jan 2023 to date my platelet count has only reduced from 1380 to 1204 !! I realise it seems very high compared to lots of others but I’m told I’m low risk due to age and good healthy lifestyle. I started treatment in Jan 23 on 90mg of peg, increased after 8 weeks to 135mg and then a further increase after 8 weeks to 180mg which I’ve been taking for past 10 weeks. Apart from occasional fatigue I seem to tolerate peg well , even 180 dose and don’t have any other symptoms, occasional tummy ache. I’ve had 4 week blood tests throughout and each increase of dose hasn’t really delivered a big drop, just a steady decrease which is disappointing to say the least. My haematologist called me last week to advise my recent blood test showed a decrease of 40 so she is going to change my treatment to hydroxy, it was a very short call and no time to object or ask questions!! on reflection, I really do not want to take a chemotherapy drug…… has anyone else found peg interferon took a while to work for them?
I am going to request a referral to Dr Claire Harrison and am speaking to my haematologist again Monday to explain I don’t want to take hydroxy. Any suggestions for pertinent questions for me to ask very welcome 🙏😊 thanks in advance or your wisdom, experiences and advice .
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my haematologist wanted to add hydroxy to the peg treatment. The 2 can be taken together. I actually said no and we waited after they warned of the risks. Turned out to be worth it as figures started to decrease after a year. It sounds like your haematologist didn’t give you a choice. I would insist on full discussion. Also check your shelf in the fridge where you keep the peg is the correct temperature between 2 and 8 degrees. Good luck
thanks Hopetohelp im all geared up for a full discussion as was surprised at her change of direction without any reason other than her assessment that peg not working for me.
I can’t say for sure on platelets but I know one PV patient that Peg took two years at 180 to get counts normal, he is now on 90, you haven’t been on the higher doses that long. I think your idea about seeing Clair Harrison is the way to go.
Hi, I was on hydro and then switched to Peg as I couldn’t cope with the side effects. It took at least a year for my platelets to be within range. My doctor was also insisting that we should up my dose (was at 135mg) but I kept saying no as I had too many side effects.
It would also be great if you can also get a referral for Dr Harrison and discuss your concerns with an MPN specialist. Good luck 😊
I have recently been in this situation, consultant insisting increase despite side effects. I also refused but I feel for patients who don’t feel they can be assertive
I started Peg a year ago this month. I didn’t see any movement in platelets until my dose was raised to 180mg about two months ago. I started at 980 and the last two labs have been 678. I’m keeping my fingers crossed. As long as you can tolerate 180mg and not considered high risk I would keep grinding it out on peg, it is your choice. Getting a specialist on board is also a great ideal. Stay well.
It took over a year for pegasys to kick in properly for me...in the meantime I had the occasional venesection to keep my bloods more stable. Pegasys is known to be slower to work...I started on 90mcg and have remained on that dose x Hydroxy definitely didn't suit me...but we're all different in what we can tolerate x
thank you RCBr i am tolerating the drug well so I don’t understand why my haematologist wants to change to hydroxy unless there is a concern about my platelet count still being 1200. I’m prepared for a robust chat with her later 🙏
I had monthly blood tests to see if I required venesection...and had that done as and when ....I now haven't required it for several months x might be worth trying that x
My body took a long time to respond to peg. I started at 45, was quickly upped to 90 and then 180mcg. Even at 180mcg my platelets stayed stubborn for a time but we persevered and then saw a gradual decrease. I understand your concern about switching too soon as I wouldn’t have been keen to switch without giving it a chance to do its thing. All told I think it took a year on peg for my platelets to reduce to normal levels. I’m now on 135mcg weekly and my platelets (and other blood results) are “looking good.” Confirmed by my haematologist last week. I now only have bloods taken and speak to my haematologist once every three months. This is working well for me.
I hope you get the support you need on your journey.
oh dear sorry you are not getting the speedy results on Peg that I did. Itook hu for 6 yrs before changing to Peg. Nothing wrong with hu. I changed because I was on in my opinion a high dose of combined drugs and a continued drop of haemoglobin.
Others gave amazing responses on it.
Most importantly get those pesky platelets down.
Maybe once they are down using other meds you could try Peg again.
As for slow to react to Peg my platelets responded really quickly and 2 yrs on my jabs have been altered again to now very 3 weeks from my original every 1. So I’m still being tweaked.
I too had limited resukts on inteferon and my platelets stayed high. In the end they put me on anagrelide in 2017 which worked and was much easier than the HU I had spent 10 years on. I am 59
I lived the same, and I decided to take 100mcgr contantly until 26 months. It is a drug which works slowly. All in range. I take Besremi once a month now. My hema, Dr. Spevak.
I started out at 180mc which turned out to be too high (liver didn't like it) and we stepped down to 90 mcg/every 2 weeks...platelets have been slowly coming down and form a high of 1,400 before Peg to now at 488 (after a year) we re happy to hopefully maintain this dose going forward. If I understand correctly you have only been on Peg for about 6 months..for some of us it works immediately but for many it takes upwards of a year or more. I would definitely push back and at the very least have a full conversation as to her rationale.
I think 180 is a very large dose . Have you taken advice from MPN expert . You will feel aches & pain in high doses hence I was reduced to 45 by MPN otherwise Haemotology would have just increased a dose I wasn’t tolerating . I am on Peg Interferon. Professor Claire Harrison Guys hospital London helped sort out my doseage . It’s not a quick fix on platelets it helps the body adjust slowly . Mine rose from an injury also Covid or any inflammation you may have even mosquito bites did it on me 👍Julia UK.
yes it’s slow but good . If you up the dose you probably get bad side effects. I had horrendous migraines & felt weak . Dose reduced & now monthly 45 feel great no side effect & lots of energy. Platelets fluctuate & blood tests every 8 weeks currently. Probably around 590 currently but changes due to various inflammation sports injuries 👍
I started with 45 every week. That was too much and caused my psoriasis to flare. So, the dosage was reduced to 45 every other week. My platelets slowly decreased from 850 to 325 over a year without worsening the psoriasis. So it was low and slow for me.
I have the usual JAK2 variation. Took 18 months for me to see any difference - weekly dose of 135 / 190… have been stable now for last 12. and now only injecting fortnightly.
It’s finally working for me but was slow (I was also advised to change treatment - but after talking to Claire Harrison she said to persevere)… also took nearly 6 months from first starting for all side effects to go away.
When I was on Besremi it did not take very long to move my HCT and platelet numbers. After 5 or 6 injections (every other week) my platelets moved from a high of over 1 million to 400-something. My HCT got into normal zone. But my liver enzymes were raised and the doctor took me off the drug. (The manufacturer advises backing off the drug more slowly, as some here have mentioned with adverse affects.) My liver enzymes went to normal after a few months off interferons. I may go back on keeping at a much lower dose. (I had gotten as high as 300 mcg on the Besremi--different range of numbers than Peg, I know.)
I guess in response to everyone differently. I’ve only been on pegasys for two months and after the third injection my platelets start to jump down tremendously. I am now in normal range. Sometimes I actually think they went down a little too quick. I’m taking 45 weekly. I see my doctor next month and I am thinking he is going to stop weekly injections. but I feel so much better. My advice would be like everyone else to stick it out. Best of luck to you.
My experience was similar to many others who have responded. I have ET and I am jak 2 positive and started on Pegasys almost a year ago. It took a good 10 months to see results, and my platelets even started to rise by several hundred thousand during that time. I also had a tooth infection, which probably had something to do with the rise in platelets. I started Pegasys on an extremely low dose of 25 since I react very strongly to medication. Over time I gradually increased to the 50 that I am on every other week now.My platelets are now in the low 500s and continue to go down and my oncologist and I are very pleased with this. I did not do well on hydroxy and felt very sick. On Pegasys I feel like my old self and I am able to swim and hike and do all of my normal activities.
I wish you the very best! It is always worth it to do your own research so good for you!!!
I am glad to read some of these emails as I am extremely nervous about going to Pegasus from the Hydrox I am on now. I was a big triathlete but had stopped due to fatigue and I can’t figure out if its the ET, the drug or something else. Turning 68 and I still bike and swim a lot but it gets tougher every month. My levels are not as high as some from 550 to 650 but mayo wants me below 400 so they are starting me on Pegasus this Friday. After getting the drug and seeing all the side effects they review its scaring me away.
I am so much better on Pegasys and I hope it works for you too. Perhaps discuss with your dr. The possibility of starting on a low dose to give your body time to adjust to it as that seems to work for many of us. I have been much less fatigue with Pegasys than I did with hydroxy. And this point I have absolutely no negative response to it.
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