Hi there,I am about to start my PV treatment with Pegasys. My doctor says to start at 90 mg as that's minimum dosage. However, I noticed others start at 45mg due to side effects and so to let the body get use to it.
How was your experience with Pegasys ? Should I listen to Heamatologist or go slow and gradually increase ?
I am 34 and my platelets are about 550.
Thank you in advance.
I think 45 is the standard first dose. The injections are usually 90, but you discard 45 of it. Could be that your haematologist is getting confused with that. I'd probably check with him/her again
The standard dose most of us start on is 45mcg. The issue is that in many places, the minimum dose that is available in prefilled syringes is 90mcg. This requires that you waste 45mcg at each dose. This is precisely what most patients do. In fact, in the USA the minimum prefilled dose is 180mcg, requiring even more wasting.
Suggest that you let the hematologist know that you would prefer to start at 45mcg and see how you respond. Note that 45mcg/week is adequate for some people with MPNs to achieve their target. Side effects are dose-dependant, so the risk/benefit profile is better if the lower dose is adequate to achieve the treatment goal.
I started at 45 mg a fortnight then after three months went up to 60mg a fortnight then after three months more went to 90mg a fortnight. Discarded the rest, injections are available as 90mg in England.
As Hunter says side effects are dose-dependant. I am a real life example who suffered among the worst, but very rare, effects of too much.
If your only blood count out of range is the 550 PLT, you do want to take care that the dose doesn't move the other good counts below range. Some members here are on even less than 45mcg.
From my experience and opinion the IFN dose should be the smallest that gets blood counts controlled, and don't rush it unless Dr says there is a reason to.
Hi there. Are you being seen by an MPN specialist? It’s just that 90mg is a pretty high starting dose - and certainly not the ‘minimum’. Added to which you are very young and your platelets are hardly elevated.
For some context the guidelines suggest that for an ET patient drug interventions are talked about (not necessarily implemented) when the patient reaches 65 or their platelets go over 1000. Although obviously each patient is different.
Why is your haematologist starting you on drug treatment? What makes you high risk? Have you suffered a stroke or previous blood clots, for example?
Wishing you well.
Her hematologist is justified in prescribing interferon because at her young age (34) she's at high risk of early death when she is in her 40's, 50's or 60's due to disease progression to post ET myelofibrosis. 3 minute video that explains: youtu.be/s9euOVQGhks?si=2n1...
The debate is certainly there and there is much research going on with regards to treatments and interventions for MPN patients - and when and how those treatments and interventions should take place. However, as far as I am aware, it is not current best practice to prescribe drug interventions to young(er) patients with relatively low elevated counts who are otherwise healthy.
Disease progression needs to be kept in perspective and the consequences of drug intervention also needs to be considered. These drugs are not entirely benign!
Every patient is entitled to a full and frank conversation with their haematologist to understand and question their treatment proposals.
The fact that Kamiilos appears to have been told categorically that 90mg of Interferon is the minimum (starting) dose should raise a red flag. This - and given what Kamiilos says about their personal circumstances - gives reason to at least raise questions about the proposed interventions. Asking questions - and getting considered answers - is critical to getting the best and most appropriate care, especially if you live with a rare and chronic disease.
I know there many patients around my age that are just on phlebotomy and aspirin.I am pretty sure I got clots in my head due to boxing as precisly after a fight I developed constant headache.
Wonder if I got the clot once due to sport, I am more at risk to have another one in any circumstance ? I am not fighting since then.
I rule that for my Heamatologist clot is clot regardless how I got it, thus I am high risk requiring a treatment...
PV is a chronic cancer. Chronic cancers advance with time. As the cancer advances, the risk of early death due to disease progression to myelofibrosis eventually becomes greater than the risk of death due to a blood clot. Interferon is an immune system boosting drug your body already produces. It helps the body fight and sometimes reverse or partially reverse progression. The earlier interferon is prescribed in the disease course the more effective it is at fighting progression. Early intervention with interferon is also when low doses that have minimal side effects are usually effective. Brief video: "Excess deaths from progression of PV disease to myelofibrosis can be prevented with interferon": youtu.be/W3JJBS645c4?si=fSl...
Hi Ebot, thank you for your reply, luckly I didn't have a stroke.I used to compeet in amateur boxing, after a fight I developed headache that prolonged for weeks. I had no symptoms and felt okay. However with headache I reached for help and thats when I was diagnosed JAK2 positive with PV. Docs said I had clots in my had due to thick blood and I've started on Eliquise to thin the blood and flash it away.
In overall I feel okay, I still exercice nearly everyday and do phisical work. In fact I had been refusing treatment since the diagnose in February. But it occurrs to me I may cause harm to myself by increased chance developing mylefibrosis.
I also stopped taking Eliquise on few occasions but headache came back.
Regardless, I agree with myself I have blood disorder but deep down I am not so much into treatment due to side effect it follows.
I think my Heamatologist is pushy because I got the clots, I thought irrelevant but I had varicose veins done on my leg 2 years ago too. My family has problem with vericose veins but their blood is ok.
The history of of thrombosis in the brain and the headaches is certainly relevant to your treatment decision. It is important to note that it is the erythrocytosis that is the greater risk than thrombocytosis at only 550. The target should be HCT<45% for a male, HCT<42/43% for a female. The target for PLT is less important in treating PV.
PEG affects the production of all blood cell lines. When I was taking 45mcg of Pegasys, it dropped my PLT levels by about 225K in 8 weeks. You will want to pay attention to your leukocytes as well. I experienced mild lymphopenia and borderline neutropenia. Setting targets for the minimal levels of the leukocytes is also important. (e.g., LYMPH>0.50, NEUT>1.00).
As our friend Ebot suggests, having a discussion with the treating hematologist and getting all of your questions answered to your satisfaction s very important. While I have responded very well to the interferons, I would not suggest they are entirely benign drugs. There is a risk/benefit analysis to be done on each of the treatment options.
Your hematologist likely discussed the option to control erythrocytosis with venesections and continue with the Eliquis. While this is the most common recommendation for someone age 34, it is not the best choice for everyone. Note that this option also has its own risk/benefit profile. The venesection-induced iron deficiency had worse symptoms than the PV for me. I feel much better on the interferons, which have improved my quality of life. Hopefully you will have the same experience.
Wishing you all the best moving forward.
Hi there. Given your history I can understand why your haematologist might be keen to start you on drug treatment. However, since you are (in MPN years!) still really young and have a long life in front of you with this rare and chronic disease it would be good if you could find a specialist MPN haematology team. This way you can be sure that you are benefitting from very latest knowledge and best practice and getting the most appropriate care. Wishing you well.
I started on 45mcg and gradually increased the dose, 90 seems far to high to start on.
I’ve just started on peg interferon. I’m on 45mcg, once a week, I have to waste half of it then inject the rest. I’ve had 4 so far and it’s reduced my platelets. The first week I was quite nauseous but that has settled down and I’m mostly ok. I have more energy than before I started it!
Hi My first weekly dose was 90mg and i had a really bad headache for 5 days. I rang the specialist nurse who advised i drop down to 45mg weekly which i have been ok on.
Hello kamiilos! I’m now 80 and in UK. About 15 months ago I was prescribed Pegasys interferon 90mcg per fortnight to treat CALR ET. That dose continues to this day with no significant side effects apart from itching that has now abated. Reduced platelets from 1330 to 474 .
You might be okay at 90 but any experts I hear talking about Peg say start low go slow, most recommend 45 , after all what’s the rush
Hi there,I refused medication for the first 3 years until I was receiving weekly phlebotomy and my numbers werent budging. I switched doctors and began taking Pegasys at the dose of 45 and gradually increased the dose. I didn't have a positive experience with Pegasys regarding side effects. After taking weekly doses of Pegasys for 8 months I discontinued. My body is extremely sensitive to medications.
I now take Besremi, which is biweekly and time released. I've been taking Besremi for 16 months and I'm taking the lowest dose once every 5 weeks, which is keeping side effects at bay and all numbers under control.
Everyone's body is different and therefore experience is as well. Based on my experience, I recommend starting low and see how you react. It's a marathon, not a race.
I wish you well and pray for the best outcome. Please keep us posted!
Started on 45 then 65. Tried 90 and it didn’t suit me. Start lower and build up. Body needs to get used to it
Kamiilos - I started Peg at 180 mcg/every 2 weeks and was fine on that dose for about two months - no side effects to speak of and my platelets responded almost immediately - unfortunately my liver did not like that dose and my liver readings jumped - went off the Peg for two months - liver calmed down and then we re-started at 90 mcg/every 2 weeks. Have been on that dose for about a year and last 6 months my blood tests have been 100% within normal limits.....we will stay at this level for likely another year (assuming blood tests stay normal) and then repeat the BMB and hopefully reduce dose...while things gong well now - if I had to do over I would start at 45 mcg and work my way up if necessary - easier to gradually increase (if need be) than go the other way...
Thank you all for your comments contribution. Couldn't ask for more 🙌🙂
no don’t start on 90 the Drs really need to educate themselves with an MPN lecture 🙈. You start on 45 & it’s gradual to get your body adjusted to it . You waste the rest of syringe until you reach 45 measurement.
90 will be too much & side effects will put you off this excellent drug. Fortunately I had read at length before my first injection. Haemotology told me same start 90 I told them I would be starting on 45 and did.
However they insisted on weekly doseage which my body rejected with blinding migraines.
Spoke to MPN & told to come off for a month & then 45 monthly.
I am still on that dose & platelets now within normal range . I have been on it a year & after HU side effects this is brilliant.
The information on this forum is invaluable & hopefully the occasional Haemotology Dept of hospital Drs read it to educate themselves.
I was told the drug had many side effects & to stay on HU . Only because it was cheaper !!!!!
It’s a brilliant drug for ET & I didn’t get a lesson on injections just read our Forum 👍
Julia . 👍👌
Thank you Julia for the comment, I did my 1st injection just today but opposite way you do. I injected till 135mcg and got rid off the rest.I have a general Heamatologist at public hospital, not an MPN specialist, nevertheless I feel she wants best for me and she lets me do most things I ask for.
Good point to do injections fortnightly. Lets see how my body adjusts to it.
Indeed forums and group chats are great for knowledge and tips 🙏🏻💛
I was told to take Hydro at the beginning but I refused. Which I guess was good decision due to my age.
Wish you well and health ✌
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