Just after a bit of advice as I’m feeling quite frustrated.
apologies for the long post……
I have ET, been on HU since I was 25 years (apart from 4 years when I had my children and was taking daily interferon injections) I’m now 42.
I decided that I wanted to come off the HU and start PEG interferon- this was 10 months ago.
At first I was told to come off the HU completely and start 90mcg interferon weekly- this wasn’t that successful as within a month my platelets were 1500.
I continued with the 90PEG and re started my usual HU dose ( taking 2g for 5 days and 1.5g for 2 days) platelets came down to around 450, which is where they seem to sit at.
2 months ago I was told stick with 90 PEG And take 1g HU one day and 1.5g the next continuing like this. My platelets went up to 530.
3 weeks ago Consultant said increase PEG to 135mcg and continue with the alternate HU daily doses.
I’ve got 2.5 months of interferon then have more bloods done.
I’m worn out and fed up. I work full time as a nurse, I have 2 children.
I get achey muscles and have been getting bad tummy aches that keep me up at night. I’m not sure if my mood is getting low or it’s just disappointing that I haven’t had much luck with the PEG.
my questions are - does interferon not work for everyone. Maybe I have stubborn platelets that won’t reduce with interferon?
I most likely will carry on with the treatment until I see the consultant again but if platelets are still in the 500s I don’t think I can tolerate doing HU and PEG and possibly an increased dose of PEG. It will be a year since I started the PEG by then.
for those of you on PEG how long did it take to kick in and what dose are you on?
thanks so much for any guidance with this.
Sorry for the long post but thanks for reading
Take care
Nicky x
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Nickyanne
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So sorry to hear of your affliction. You seem to have a very busy life juggling family, job and medication. I’m on Peg (90mcg per fortnight) and have experienced very few side effects, save for a bit of stiffness that wears off when I dog walk. My platelet count was 1600 when I began Peg about 10 months ago. It’s now dropped to around 520 which the consultant haematologist (NHS London hospital ) believes is acceptable. You don’t say how old your children are but are they of age when they could be pulling their weight in terms of household chores/ cooking meals etc? One isn’t a domestic goddess and if domestic stuff slides, don’t beat yourself up. Take regular time out for your hobbies and friends.
I’ve been on Peg a few years now 90mcg every three weeks and it took quite a few months for platelets to drop but is now working well. You need to allow a bit longer I think. A count in the 500s isn’t that bad. I’ve never heard of taking HU at the same time so don’t know about that.
so sorry the peg isn’t working for you. I went onto peg a few years ago after not tolerating HU. I didn’t have a transition period and went straight onto peg. I was on 90 weekly, then I dropped to 45 weekly, and now I’m on 45 every three weeks and my platelets are still under 450. So it works for me with less side effects than the HU. I hope you get sorted
contact MPN specialist they are the experts on doseage & medication. There is a list of the ones in each country on this forum . They will sort your doseage if it’s not correct for you 👌
I'm on month 6 of Besremi [Ropeg INF] and still getting HCTs in the upper 40's to 50's range [where my goal is <45], but I'm also still on dose-titration upwards for now, so my frustration is [mostly] manageable.
I was initially on both HU and INF, but stopped HU abruptly because of similar symptoms to those that you describe which were worsening while on both.
They got better very quickly when the [chemo-toxic agent] HU was d/c'd.
Unless your symptoms specifically vary with timing of your Pegasys dosing intervals [i.e., your symptoms peak shortly after the injection], I wouldn't consider it being related to the Peg INF, but rather either the HU or the combination.
it can take a while for peg to be effective in changing counts for some, I know of one person who needed high dose Peg for 2 years before it controlled his red cells enough to avoid venisecting. Also in the long term up to 40-50% can’t tolerate Peg. It’s a good drug if one can tolerate. It may be worth consulting a MPN expert once or twice for advice.
"Globally, 87% of the patients treated with peg-INF responded (26/30), with a CR rate of 70% (21/30). Median time to CR was 6 months and median peg-INF dose at CR was 90 μg weekly. The four patients who did not respond had to early discontinue treatment due to intolerance. Most patients (87%) experienced some adverse events: hematologic toxicity (43%, grade 3–4 7%), flu-like symptoms (30%), and liver test elevation (23%, grade 3–4 7%). Overall discontinuation rate was 20%. JAK2 allele burden reduction was observed in 88% of the patients (21/24 evaluable ones). Median JAK2 allele burden at diagnosis was 40.5% (range 1.5–91%), and it decreased to 17% (range 0.3–81%) and 15.8% (range 0–77%) at 12 and 24 months after treatment start, respectively."
"Overall 11% of CHC mono-infected subjects receiving 48 weeks of therapy with PEGASYS either alone or in combination with COPEGUS discontinued therapy; 16% of CHC/HIV co-infected subjects discontinued therapy. The most common reasons for discontinuation of therapy were psychiatric, flu-like syndrome (e.g., lethargy, fatigue, headache), dermatologic and gastrointestinal disorders, and laboratory abnormalities(thrombocytopenia, neutropenia, and anemia)."
This one seems like more of an outlier, but is diretly MPN-related:
Pegylated Interferon Alpha-2b in Patients With Polycythemia Vera and Essential Thrombocythemia in the Real World
"Several clinical trials have shown promising efficacy of pegylated interferon (Peg-IFN) in the first- and second-line polycythemia vera (PV) and essential thrombocythemia (ET). However, the efficacy and safety of Peg-IFN in the real world have rarely been reported. Hence, we conducted a prospective, single-center, single-arm, open exploratory study, which aimed to explore the hematologic response, molecular response, safety, and tolerability of patients with PV and ET treated with Peg-IFN in the real world. This study included newly diagnosed or previously treated patients with PV and ET, aged 18 years or older, admitted to the Department of Hematology of the First Affiliated Hospital of Soochow University from November 2017 to October 2019. The results revealed that complete hematological response (CHR) was achieved in 66.7% of patients with PV and 76.2% of patients with ET, and the molecular response was obtained in 38.5% of patients with PV and 50% of patients with ET after 48 weeks of Peg-IFN treatment. Peg-IFN is safe, effective and well tolerated in most patients. In the entire cohort, 4 patients (9.1%) discontinued treatment due to drug-related toxicity. In conclusion, Peg-IFN is a promising strategy in myeloproliferative neoplasms (MPNs), and Peg-IFN alone or in combination with other drugs should be further explored to reduce treatment-related toxicity and improve tolerability."
I havnt read these articles in detail but it seems they are short term trials, drop out can come 3-5+ years in. thats what Dr Hasselbach and Dr V told me, as you prob know Dr Hasselbach is Dr Peg so I assumed he was right
I started Peg a year and a half ago. I started with and still use 45 every other week. My platelets started at a little over 800 and are now under 400. My MPN specialist thinks anything under 500 is acceptable. .
Hi, try and be patient, Peg took over a year for mine to work, am now only taking 45mg fortnightly.I do think the side affects get better as the count and dose lowers. Take care I know how hard it can be and I didn’t have young ones to worry about.
I started Besremi interferon, 2 1/2 months ago, and my platelets are going down very very slowly. I have been able to reduce my anagrelide by half. I will have a blood test end of this week. My doctor said that interferon takes a while to kick in and work. You have to be patient.
I take my interferon biweekly. I have now reduced my previous medication to just one capsule a day instead of four. If my bloods are OK on Friday, then I will be happy. My next interferon will be the normal dosage of 125 µg. I have been taking 100 until now since I am usually sensitive to medication.
My old nasty symptoms have disappeared completely since reducing the anagrelide. The only thing that I feel on the interferon, is being a little aloof, my hands and movements are a tad off. I am very sensitive to my body so I recognize absolutely everything that is off-balance. It is known that interferon causes psychological problems to most of the people who take it. I am a bit touchy the first two days then everything is OK.
for my particular interferon, they warn against severe depression. The fact that we are both taking two different medication’s is also something to consider. Nevertheless, you need more time. 1-2 months. Just don’t think about it too much. 🙂🙂
We all respond quite differently to the meds used to treat MPNs both in terms of efficacy and tolerance. For most, PEG takes longer to reduce PLT than hydroxyurea. It also may have a different level of efficacy for the different driver mutations. Do you know which driver mutation is causing the ET?
While I used hydroxy previously when I had ET and did OK on it, as I aged and progressed to PV it was no longer effective and I could not tolerate it. When I started on 45mcg PEG, it took 8 weeks to get my PLT to target starting from PLT 700s-900s. I also tolerated the PEG much better, with occasional itching/mild rashes and mild leukopenia as the only adverse effects.
Given how high your PLT have been, it is not surprising that it would be harder to get them under control. Many MPN Specialists no longer use "normal" as the goal for treating ET. Some now use 600 as the number when a numeric is used. Others pay more attention to the delta (degree of change). silvermpncenter.weill.corne...
Suggest reviewing your treatment goal and plan with a MPN specialist. Your goals and treatment plan need to be individualized to your case. One size does not fit all when managing a MPN. Also note that MPNs evolve over time. Your treatment needs can change.
I am currently on 150 mcg Besremi to manage PV with thrombocytosis. I am doing well and tolerating the med with only minor side effects.
Wishing you success in finding the right treatment approach for your case of ET.
I found peg didn't work for me, I took it for over a year starting at 45mcg gradually going up to 135mcg. I blame most of my side effects on any thing but the peg. On the higher doses I was having several bouts of diarrhea daily, forcing myself to eat, weight loss, severe anxiety ( I suffer from anxiety but the peg made that so much worse) and ended up in A&E several times with chest pain I thought was heart attack. Since stopping peg 6 months ago no chest pain. I am back on hydroxy 2 daily, my platelet counts are finally coming down.I must admit I was gutted peg wasn't for me and although I don't like the hydroxy it gives me a better quality of life than the peg did.
Both meds have very different side effects it's no wonder you feel like you can't carry on .
For the majority peg works very well but not all. Drs tend to focus on getting counts down and ignore how debilitating the effects of the meds can be.
I was on a mix of anagrelide and Hydroxicarbomide for 6 yrs eventually 26 tablets a week and rarely was I stable.
I was down and deflated. I changed to Peg which as you know does in some lower your mood. My body is responding extremely well. I took 17 Hydroxicarbomide and 90 of Peg and my platelets in the first week roughly halved. From approx 475 to below 300.
At the moment I’m on 90 a week. We tried every 3 but my plates rose and I was about to go on a 6 week holiday. I suspect I will try and reduce to every 2 and 1/2 weeks on my next visit.
Some people take a year or more to respond. I met a young lady who was on two jabs a week I think it was 135 units.
I think you have a lot on your plate. I was mentally really low when nearly every 8 weeks my meds increased. I think maybe you are at that point. To increase your dose I don’t think is unreasonable but obviously side affects and quality of life are something you have to battle with.
Maybe in time an increase in Peg will allow you to drop the hu. Your platelets are decent at the moment . Were they stable on hu?
I’m no consultant I wish you well on what ever you decide to do.
Meanwhile any bit of support would help you. Have you looked into PIPS? I know it’s difficult to get but you never know. If you do apply go to Age Uk. You will qualify for their help if you go with someone over 55 ( I think). Even a getting a blue badge could help.
Sorry to hear Peg hasn’t worked for you. I can understand your frustration, I am currently on 150mcg of Peg weekly and been on Peg for 7 months with no results yet. I don’t seem to have any side effects yet so it’s easier to continue trying. If you are having side effects maybe it would be worth consulting with your provider to see if they can be controlled somehow while continuing on Peg?? I drink a lot of water since being on peg . I try to consume 2000ml daily and 4000ml the day of my shot, taking my peg in the evening before bedtime. Good luck in what you decide.
i would be a bit cautious on the 4000ml a day, too much water is not good , it can wash out sodium and other things , a urologist told me 2500ml is enough, maybe run it by your haem though
I started with 45mg weekly and was increased to 90 and then 135mg as my platelets kept increasing (were within range when I was on Hydro). It took just over 12 months for Pegasys to start working so just need to be patient 😊
Sorry that you've had to have so much trouble with your medication. I've been on Pegasys for about 9 years. Had NO trouble in the beginning but it is like it wears you down. Now I too have bad stomach and pain/strangely "unwilling" muscles, lost my hair, my teeth and nails get splintered. A bit difficult here in Denmark, cause the docters are unwilling to share knowledge (strangely strange but ugly normal ) so I feel a bit like living alone in the desert with only a deaf camel as companionship.
Seems like American and British doctors are much more "social" and interested even If you voyage through medication does not sound pleasant. I really hope you will find a sort of balance. Like me, you surely feel like needing a medicine free holiday -- loooong !!
I think in Denmark (or close) you have Dr Hans Hasselbach, his passion is the interferons for MPN , he is one of the nicest and best docs you could meet
Hi Nickyanne. I'm sorry the PEG seems a bit sluggish for you. For me - it took a year of weekly injections at 90mcg for my platelets to come within reach of normal (I was up to 1.1Mil). PEG was very slow acting for me also but I did see very small but steady improvements with each blood test. I am about a year and a half now into PEG (still at 90 mcg/week) and my platelets and other bits seem to finally be settling into range and stable.
Good luck - I hope improvement and get some relief from all the dosing very soon!
May I ask if you have any update as to your response to treatment? Any
Regarding the "care and feeding" of my PV, I'm due to increase my bi-weekly Besremi dosage to 500 mcg this coming weekend, and as I posted elsewhere, last week I experienced the only evidence of any effect whatsoever from my treatment on Sunday, when after my 450 mcg dose, I awakened with body aches and fatigue as if I had been in a marathon the previous day.
But I had done nothing other than my usual activities. Thus my only effect thus far was the side-effect many others have had with every dose of their INF. BTW, I was also required to have phlebotomy on Tuesday last week because my Hct increased to be >50%.
I hope you have/are getting better efficacy than I have thus far, but I am not giving up hoping for us both.
Update from me…… no change really. Increased my PEG to 135 mcg and taking the hydroxyurea 2 tabs one day 3 the next . Platelets were around 570 at my last blood test a month ago. Think that’s actually the highest they’ve been for a while. But I had COVID a few weeks before so don’t know if that made a difference. I also get afew aches but weirdly not the following day after taking the PEG, it’s normally a few days after. It doesn’t last long and doesn’t stop me from doing anything.
I’ve been taking the PEG for a year now, will need to see what my consultant thinks regarding increasing the dose or if I’m ready to say stop. Really had high hopes as it took me such a long time to decide to start PEG ( I had tried interferon about 17 years previous and did not get on well with it) but hey ho.
Good luck with your journey, it’s odd how some people seem to get really quick results and others not so much.
If it really seems like the Peg isn't working, it might be worth asking for the next generation sequencing (NGS) testing to look for any co-mutations that might be inhibiting your response- and if there aren't any, then maybe trying Besremi might work for you.
If there are some co-mutations, they could explain your lack of response to Pegasys, and they could possibly also cause muted response to Besremi:
"Early studies also indicate that DNMT3A mutations are enriched after IFNα treatment, suggesting a possible association of this mutation with IFNα resistance in patients...."
The reasons for such heterogeneous responses are still poorly understood, but there is evidence to suggest that the presence of additional mutations might be involved. Indeed, in some patients with both JAK2V617F and TET2 mutations, we observed that TET2-mutated cells persisted, whereas JAK2-mutated cells were dramatically reduced....
...In conclusion, our study is the first to report on clonal evolution of CALR-mutated ET patients treated with IFNα, showing the possible coevolution of several subclones. The presence of additional nondriver mutations affects the response to IFNα therapy, a finding that deserves further investigation to understand the underlying molecular mechanisms and possible impact on clinical outcome."
Hi all, I was diagnosed with ET in May this year, started on aspirin, then decided with consultant to go on to Pegasys, in preference to Hydroxycarbamide (I am pretty healthy, but over 60). In a few weeks my platelets were low enough to be able to have the knee replacement op. which had been put off when my pre-op bloods in early March caused my consultant surgeon to refer me to haematology. Had the op at the beginning of August, able to do all the exercise and recover quite quickly.So far so good, tiny injection once a week, low dose of 45m, platelets down and no serious ill effects apart from the first couple of weeks feeling achy and tired, recently diarrhoea for a day or two (but not sure if related), slight nausea with that- appetite alightly affected, but all doable.
I remain asymptomatic and am optimistic that with the interferon's help my ET can fade into the background of my life for some time to come.
I don't wish to sound smug, sorry if I do- but peginterferon alpha2a seems to work well for me and my Jak2 mutation.
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