Hi, I'm wanting to hear from people who have changed treatments. I'm especially keen to know what doses you were taking of HU and what doses of PI.
I have polycythemia vera with JAK2 variant. I was diagnosed sometime ago. Maybe 7 years. Have had various treatments including venesection, interferon alpha. And most recently for the last few years hydroxyurea/hydroxycarbamide. I was quite stable on a low dose 500mg a week until this late 2020. I am currently on 1000mg a week and blood results are a little outside the normal range. HCT great though.
My hematologist has offered my Pegasys. I'm interested in how well different people tolerate it as a therapy and how effective they have found it.
Looking forward to hearing from you.
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Thanks for you reply. What sort of difficulties did you experience on Pegasus? What doses did you take while on it? How long did you take it? And what dose are you on now while switching back to hydroxycarbamide?
Hi Suzanne. I have ET and jak2+ and was diagnosed 7 years ago. Just over 5 years ago I was put on treatment and placed on Hydrea for two years taking 1000 - 1500mg per week. Hydrea didn’t really work for me (it was horrible to be honest) and I changed over to Pegasys three years ago. In short Pegasys has been brilliant for me with my blood tests now coming back with everything in the normal range. Initially for the first 4 weeks I was on 45mcg’s weekly and then it increased to 90mcg weekly. Roughly two years ago I moved to 90mcg fortnightly and for the last year I’ve been on 90mcg every three weeks. I still get some fatigue in injection week but it’s only 1 to 2 days. My tinnitus has increased but they are the only side effects. I’ve found that as I’ve pushed my injections out to two then three weekly I’m getting more normal weeks with any side effects. In short It’s been fab for me. Cheers
Thanks Mark. It's great to hear about your experience. It's helpful for me to have an idea about how it works for other people. It gives me a different picture that data sheets and available pharmaceutical information.
Suzanne, my story is very similar to Kinsale’s. 59 yo with ET with Jak2, diagnosed nearly 20yrs ago. No treatment aside from aspirin for years, then Hydrea for 3-4 years which I didn’t tolerate very well: fatigue, hair loss, mouth ulcers, skin cancers, and with very fluctuating platelet levels! I’ve now been on Pegasys alpha 2a since early 2020- brilliant! My platelets have never been better and I can’t say I identify with any side effects. Fatigue perhaps, but much of that I contribute to life! So glad I listened to my hematologist who I admire greatly. Good luck to you ☺️
Thanks MPN62. It sound like you're doing really well on Pegasys. I was interested to know that your platelets have returned to a normal range. Mine are slowly creeping up out side the normal parameters despite taking a higher dose of HU.
Hi I’ve been posting every time I had a peg jab. On about jab 6. I have ET. I think if you go on my profile my posts will come up.The shortened version- go for it xx
I was on 17 pills of hydroxy a week. So 8500mg, I was moved to Pega some 4 year ago , my numbers stayed the same, and I was still on reduced hydroxyl, plus venesections, in my case I am still on 1500mg of hydroxyl per week, plus 135mg Pega, no venesection in nearly a year. Pega took 3 years to show any improvement,
Suzanne - I am 52 Et Jak2+ - officially diagnosed last year but high platelets for last 7 years - was on aspirin only until about 6 months ago when platelets (which had been around 700-900 spiked to 1,400 with bleeding at the gums). MPN specialist suggested we start with Hydroxurea - started at 500mg a day and ratcheted up to 1,500mg a day (21 pills a week). Numbers improved but plateaued around 700's level. Came with significant side effects, severe rash, skin ulcers, nail discoloration, breathlessness...given the sup-optimal results (stuck around 700 for platelets after 5 months) and the side effects my specialist agreed to switch to Peg. Now on 90mg/week - 3rd week in - have first CBC next week to see how things are going - still on 1,000mg/day of HU until we see how things are going with Peg. So far, fatigue has been the main issue and hoping it stays that way.
Hi Solyesh, Thanks for sharing. Are you thinking about posting you results after you CBC? Is the fatigue that you are experiencing changing the ability for you to go about your daily life? Are you having to adjust a lot of things to cope with the fatigue ?
Suzanne - will definitely post an update once I have the results back (I also see my MPN specialist the day after the results and will report on his observations)...the fatigue is fairly acute on the 36 hours after the injection (I take it late at night so I can hopefully sleep through the first part) but hasn't really caused me to alter life (I have skipped the gym/workout the day after the injection - that is as much the bone stiffness as the fatigue) - after the "day off" things have so far (only three weeks) more or less returned to normal...I have felt bone stiffness/pain (especially in my hips) in the mornings as soon as I get out of bed which I have never had before...but that tends to disappear after about half an hour...
Thanks for sharing. It's eye-opening to learn about the possibilities. It's a daunting choice for me to have to make knowing what the downside could be.
As I've posted elsewhere, if you can get your Allele burden % before starting INF it is a good idea. INF can reduce it, but you need the starting point to know.
Also be sure to ask your Dr about switching to Ropeg if/when FDA approves it.
Shiftzz noted it took 3 years to see improvement. This seems the common deal with INF, vs HU that works right away but doesn't fix the underlying issues.
Hey ETguy, thanks. I having Allele burden % done wasn't something that I had considered. That's a good idea. I also wasn't aware the INF took a relatively long time in relation to HU to show measurable results.
Availability of pharmaceuticals for me is a bit limited due to my location. Pegasys has been added to the available list in the last year.
The best data is for Ropeg, which is a newer version of PEG. The time line I refer to is the allele reduction. There is no comparing to HU in this since it is not good at allele reduction. I think PEG is not that slow at getting blood control. For Hunter below, how fast did your blood improve after starting?
You can look up the "Continuation PV" trial that is full of neat info on the Ropeg version of INF and compares it directly to HU.
Thanks ETguy, Right. Now I understand that you were focused on allele reduction. I missed that when I read your initial reply, hence my confusion. I was aware that PEG was able to stop the progression of disease and provide a small occurrence of remission for some individual's.
Thanks for the trial information. I'll have a look at it. Most of what I've seen the last few days during my deep dive into MPD treatment options has seemed quite bleak.
I'm with you on the unsatisfying current options. This trial has been my hope since Dx last year. FDA rejected it last March, bec they can't visit Taiwan where it is made. FDA is there right now for a rare covid era overseas inspection. I've been checking the Taiwan discussion group. We should have some info by end of this month, with FDA action scheduled for Nov.
We've seen here however that not everyone tolerates INF, while ropeg should get more success than PEG, there's no assurance. If ropeg is approved you should easily qualify since you have PV Dx for which it would be explicitly approved.
If you are getting phlebs you can look forward to possibility of Rusfertide that Hunter has noted. But its trial was just put on hold by FDA yesterday, so nothing is easy.
Givinostat is another new agent being studied, but it doesn't look as good as Ropeg in my opinion. There's even a dual shot being studied using some of the new tech. But that one is still early. Another study of gene therapy for sickle cell looks promising and I've read its lessons could translate to MPN, for a fix-all shot "some day".
In sum, if we all waited another ten years to have MPN we'd likely have a lot of good options. But near term is not too bad either.
I've read that starting INF therapy soon as possible is desirable. I plan to bug my Dr when Ropeg becomes available.
Regarding INF alpha you had, I've read is not very good, with its frequent dosing associated with many Adverse Events. The longer dosed peg versions are better.
Hi ETguy, I'm really appreciate the information and thoughts that you have shared.Through my most recent thinking about changing medication I've come to realise that I'm in a different phase of the disease then when I was initially diagnosed. That's been sobering.
In your last post you addressed a concern for me about the autoimmune side effects of PEG. After taking INF alpha I developed hypothyroidism with a low amount of thyroid antibodies in my bloods. My haematologist and I both think my mild form of Hashimoto's is related to the INF alpha. I'm medically stable. And my haematologist and I have become aware that quite low doses of pharmaceuticals work best for me. This knowledge will certainly help moving forward into new treatment territory.
I just posted a new thread with a research paper I just found. I'm not sure how these are findable in this forum. It suggests you really want to try PEG. Check out the info.
Your note about dose fits a pattern I've seen, old fashioned INFa is really hard to control, while the newest Ropeg is easiest, with PEG being ok. So your Dr's suggestion for PEG is great, and if it is better for you than old INF but still not great, you can ask about Ropeg if/when it's approved (possibly in Nov.)
I have PV with both erythrocytosis and thrombocytosis. The last time I was on 500mg HU/day it was not effective and I needed venesections every three weeks. I also experienced adverse effects even when the dose was reduced to 500mg/every-other-day. I went for a time with venesection-only, but had problems with the chronic iron deficiency. I started on 45mcg PEG/week in May of this year. My response has been amazing. All blood levels are well controlled and I have had no adverse effects at all.
We are all different in how we respond to the treatment options we have. I hope you find the right approach for your ASAP.
I actually achieved HCT control within about a month. Noting that my iron levels were extremely low at the time, good but not compelling. HCT is staying steady and at goal (about 44%) even though iron levels are coming up, which is really good. PLT dropped to 477 at two months and 398 at three months. Back up a bit to 436 at month 4. Nothing to worry abut as PLT levels always cycle up and down. On the whole I am very pleased with my response to PEG.
I have been taken off Pegasus completely and put on 1 tablet of hydroxycarbamide for the time being and a venesection last weekand have more blood tests in about 10 days. I was on 45 and increased to 90 and was on it in total for 12 weeks. My quality of life completely altered due to mainly the depression I lost interest in anything and very much lost my appetite. I will be pleased when Pegasus is out of my system. My haematology team have been very supportive during this time.
Hi Hughley, I can relate to you. A few years ago, I had most of the symptoms listed as side effects when I took interferon alpha. I pushed through for about 12 months but I wouldn't consider doing that to myself now. My hope is that you come back to better health soon. Thanks for sharing
Hi PV jak2+.. I had high RBC, PLT and WBC. All low normal now. I was on HU for 3 days. I didn't tolerate it. I think of my switch to Pegasys as never having been on HU. All our body's are different on how we tolerate any drugs. Pegasys is perfect for my body. Pegasys took a year to fully control my counts. I've been on Pegasys sun 2016. It's improved all my symptoms. Definitely worth a try xx
Hi Suzanne I’m 64, post ET MF CALR 2 TET 2 dx via BMB last November I had been taking HU on and off for 20 yrs to control my platelets then mid last year they shot up to 1400. I also had lots of immature red and white cells in blood test. I had to take 3 HU a day to try and control them. I suffered severe side effects from the HU including what seems like damage to my wind pipe mouth and throat which has created a chronic dry cough and breathlessness though MF can have this symptom as well. I also suffered severe food sensitivities and ongoing digestive weakness. It was very slow to control the platelets at the same time my WBC increased as well as LDH I was started on 45 mg of Peg in November with reducing amounts of HU over a month. 1 month later PEG was raised to 90mg once weekly and I tolerated it very well with feeling really like my old self again after some initial symptoms of cold like syndrome and fatigue easily managed with paracetamol and all of my HU side effects gone. Until 1 month ago when nearly every side effect listed for PEG manifested. That was bad itching on my back, thyroid irregularities including ending at ED with severe heart irregularities due to thyroid. Severe anxiety and then depression that felt like my body over riding my mind, unexplained significant weight loss but possibly due to depression etc. thinning hair, burning hands and feet severe unquenchable thirst. Burning tongue. I don’t wish to scare you but I think for me my dosage was too high. My MPN specialist took me off for 4 weeks and all symptoms finally disappeared. I have just started back on PEG at 45ml once per week and will have to monitor bloods as the platelets have jumped to 1400 again ( from 420) and WBC count up to 38. I think she will do another BMB soon.
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