I have ET and am Jak 2 positive. I was on hydroxyurea for two years, but the last six months were difficult because I was extremely nauseous and tired. I am extremely light weight to medication‘s effects and so was on hydroxy once every three days before it became too much for me. I switched to Pegasys three months ago but again at a very low dosage. I have been taking 25 every two weeks but last Tuesday moved it up to 35, which made me very sick. I am an active and young for my age 71-year-old woman.
I know that it takes a while for Pegasys to lower platelets but mine have gone up to 741 and then 830 over the last few months, prior to that I was at a low of around 580 on hydroxy, down from 1 million.
I know these are very low doses but my body really cannot tolerate much more. What I am wondering is whether it would be better to go to 25 per week or try 35 every two weeks, even though I had difficulty with the higher dosage. I guess another option might be to take one hydroxyurea per week in addition to the Pegasys, but I really hate the idea of the side effects.
All of my other bloodwork and numbers are good and within normal range.
My oncologist does not have a lot of experience with Pegasys and there are no MPN specialists here in Hawaii. My oncologist is very willing to work with me and has consulted with people more experienced with Pegasys than he is.
I am feeling much better since changing to Pegasys even though my energy has not come back to pre-medication levels.
What I weigh is the balance between wanting my platelets to come down, but also wanting to feel well enough to do all of the things which are good for me like hiking swimming yoga etc. these things keep me feeling fairly healthy and sane.
I have an excellent naturopathic Doctor who has helped me to maintain a decent level of wellness.
I wonder what other people have done in a somewhat similar situation?
without this website I would not even have known about the option of Pegasys which I wish I would have gone on sooner.
Thank you for reading my somewhat rambling question.
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Island-Lady
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Hi when I first started taking peg interferon it gave me flu like symptoms afterwards & it continues to do so. I learnt to take it before I went to bed with two paracetamol. That way I slept through most of the side affect symptoms normally by 11am the next morning I feel fine again. I have an active job so make sure I take it when I know I’m on a day off the next day. When I first went on it 2019 it took a while for the dosage to be set right with my haematologist it’s a bit of juggling at the start to find the best frequency of dose.
I was on weekly injections then it was moved to every 2 weeks, it brought my platelets down really well but at one point affected my liver count so it was then moved to monthly injections which improved my liver count. Three years on my platelets have been consistently low so I’ve just been fully taken off it. They are hoping my platelets will remain low & will continue to monitor me.
For me the advantages of it have far outweighed the side effects. It cured for me with the massive fatigue I had and itching skin. It’s been my life saver keeping me able to do my job & stay active.
Everyone is different and I really hope it starts to work for you. Best wishes from the UK
thank you so much for your helpful reply. That is fantastic that you were able to go off of Pegasys, and in such a short time. Wishing you all the best.
It’s early days I’ve only just come off it 3 months ago I’m seeing my haematologist in the middle of November to check my bloods to make sure my platelets are not coming back up. Hopefully they will remain low. I’ve got Covid at the moment so I’m not sure if that will affect my platelets too. Wishing you good luck & I hope the Pegasys works well for you too. Best wishes Claire
I think you're feeling ok at 25 per two weeks, while a first dose at 35 hit hard.
In IFN therapy we want to keep the IFN level in our body as even as possible. The newer IFNs (PEG, Besremi) have made this possible.
More frequent, smaller doses can help with that. After a while we get used to the IFN and can take longer between doses. For example Besremi starts at 1/ two weeks, and usually goes to once per month after a year. PEG can be similar, start at once per week and later once per two weeks or more.
The idea is you may want to keep the once per week dose, and adjust the dose within that. Then your body IFN level will hold more constant and you may feel better than if you hit it only twice a month.
this has been helpful. Thanks EPguy! As my HCT has come down from 56% at the start of the year to now 41.9% after being on Pegasys since April, I’m now wondering how to discuss w my doc to titrate or adjust my dosage. Am now on 135mcg/week. Will see if doc agrees to 90 mcg/ week!
To add - going down from 180mcg/week to 135mcg/week has made a difference to energy levels. Was rather fatigued then and now feel much better. Liver doing better at 135mcg too. Suppose it’s all about balance.
That is a great IFN response, and high HCT is a known risk point so you're doing well there.
I'm in a similar debate with Dr, I've always had CHR (bloods in range) but he keeps wanting to add more. Less can be more when it comes to feeling well.
thank you so much. I thought that I sent this before but I don’t see my response so I wanted to make sure that I thanked you for your good advice. Wishing you the very best
I have only ever seen one MPN Specialist listed in Hawii. Honolulu HI Dr. Michelle H. Miyashiro mpnforum.com/list-hem./ Have you checked out thisdoc?
We each respond so differently to pegasys that it is hard to generalize. I tolerated it quite well at 45mcg/week. I switched to Besremi and not tolerate 150/mcg every other week.
I think EPguy has a good suggestion in considering more frequent low dose rather than occasional higher dose. If possible, i would review this with Dr. Myashiro if she is still available. I would also review the more frequent low dose option with your current hematologist. Perhaps you can come up with a viable plan that you will be able to tolerate.
dr. miyashiro is only handling breast cancer at this point. I have called twice over the last eight months or so and they were quite specific about this that she is no longer handling MPNS. I will look into finding a specialist on the mainland who will do telehealth but when I talked with my insurance company they said it is a long and iffy process.
I will definitely consider the smaller more frequent dose.
thank you so much. I have learned more from this site than anywhere else and it is truly a lifesaver and a peace of mind saver.
I hope you will find a MPN Specialist to consult with. Tele-video restrictions are back in place for many States. it is too bad. The more permissive rules for tele-medicine during COVID was a real benefit to patients.
Thank you! I have another question for you…. do you know the name of the test to check the allele burden? My oncologist doesn’t generally check this but was willing to and ordered the wrong test🙁
The test has various names and interactions. Broadly it is called a JAK2 Quantitative Analysis. The Specific test I took was JAK2 V617F Mutation Analysis by Real-time PCR from Integrated Oncology. I believe this is the correct link. labcorp.com/tests/481020/i-...
I have also had the IntelliGEN MPN Myeloid Panel from Integrated Oncology done through Labcorp. This is a much broader look at the genetic prpofile and looks at non-driver mutations too. The doc has to be careful to have the labtech order the right test. they made a mistake the first time and ordered the AML version. files.labcorp.com/labcorp-d...
I take 25 every other week which is very tolerable for me as I am sensitive to medication. It has taken over a year for my platelets to come down from the high 800s into the high 300 range. My MPN specialist thinks that starting low so that the drug is tolerable is the best approach even though it may take longer to reduce platelets. She is happy with platelets below 500, although I read that other hematologists are happy with platelets below 600.
thank you so much for your helpful reply. It is good to know that there is someone else who is also taking very low doses. So glad that it has worked for you.
I would seek a 2nd opinion with an MPN Specialist. Even though there isn't one in Hawaii you can have a video consultation with one and pay our of pocket for it. They will look at your labs and answer your questions. I recently reached out to Dr Cecily Forsyth in Australia and she was more than happy to set up a video consultation. Hope you are on the mend soon! Take care
When I looked into seeing out-of-state specialist in USA they required at least one in person visit to get started (Cornell) or all in-person (Anderson). This seemed to be separate from how it was paid. There were some temporary Covid exceptions but those are gone. It was about state licensing issues.
But you suggest a virtual visit with an out-of-country specialist. This could be a work around, quite interesting. For just a 2nd opinion probably not too expensive.
That is interesting considering you are a US citizen. I am in Tasmania and there are no MPN specialists here. Did you have a referral from your own doctor or did you contact her directly? As I am Australian I would probably have to obtain a referral from my GP to start with as that's the process here.
Hi, I am new to the group, as after living for decades with platelets ranging from 550 to 750, they finally reached 830 and started to affect my other blood counts. I have a (new) JAK 2 diagnosis of ET, and will have bone marrow tested today. My main doc is a Chinese herbalist/acupuncturist and I would love to avoid hydroxyurea, though I am undecided since I don't yet have the whole story. I certainly prefer the notion that herbal treatments are actually helping thin the blood and tonify the system instead of toxifying the organs in the process of achieving a platelet level. I know this is scary and too far out for some. I just wish I could talk to more Chinese practitioners, since theirs is an ancient medicine that has worked well for them. The oncologist is surprised I have not had clotting, etc in these decades. (Vegetarian, normal cholesterol and low blood pressure, fairly active walking and qi gong or yoga, etc) I read that many people are panicked to have platelets at the level I've had for years without much worry from docs, aside from annual check. Thanks for all the information, everyone, as I'm still swimming in these deep waters. Feels lonely.
If you find a traditional medicine that provides large and lasting changes to PLT that will be great for members to know. So far only Dr's types of medicine (HU, IFN...) can do that from what we've learned here.
I think that Acupuncture is wonderful and extremely helpful. When I got my diagnosis, my acupuncturist let me know that she could not lower my platelets. When and if you go on medication is a very difficult choice and acupuncture and Chinese herbs can really help you to stay healthy. They can also help you to tolerate medication should you choose to go on it. I know that these decisions are so difficult and it is worth it to give yourself time to research and find the right answers for you. I wish you the very best.
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