Now Christmas is over my next appointment is looming on January 5th. I am to discuss whether to start Peg . I have ET and have been on 500 hydroxycarbomide daily for over 3 years Although this brought my platelets down from over 1000 they have stayed around late 700s mid 800s and my haem has wanted me to increase my dose for quite a while . I don’t want to do this . I was hopeful a low dose would do the trick but am not happy to take more and more . I have hardly any side effects on this dose apart from slight thinning of hair and dry skin . We like to cruise and have no problems taking hydroxy when travelling . I just don’t know what to do . I have read various experiences on here and a number of people have said it can take a while for peg to work and it can have side effects Also I have an under active thyroid and I’ve read it might upset that . So do I stay as I am . Agree to increase hydroxy or switch to peg and risk it taking a while before I feel as well as I do now. I have a very busy life looking after my small grandchildren and travelling especially on cruises . Any advice or opinions would be appreciated .
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There is not a clear answer to your question. It will be a judgement call.
It sounds like you are tolerating the HU well enough at the current dose but are not responding as well as your hematologist would prefer. This raises a question. What is your cytoreduction goal and why? Many MPN specialists no longer use "normal" as a goal since there is not a linear relationship between thrombocytosis and thrombosis risk, though there is one to hemorrhage risk at higher PLT levels. Some use 600K as the target when a number is used. Others consider the delta (degree of change) to be more important. Your history of thrombosis/hemorrhage is relevant in setting your goal. Note that the actual risk of thrombosis/hemorrhage is what matters, not a number on a lab. The other issue that matters just as much a reduction in these risks is symptom control. Effective MPN treatments are about more than thrombosis/hemorrhage.
The second question is about your risk tolerance. What risks you willing to take or actual adverse effects are you willing to experience? HU adverse effects are dose dependant, like all medications. PEG does have a caution if you have thyroid disease. You will need to compare the intrinsic risk of a higher dose of HU to the cautions and risks of PEG. Which risks are you more willing to take to achieve your treatment goals?
Another question is about treatment preference. Do you prefer chemotherapy or immune-modulating therapies. Would you want to consider another medication like anagrelide? Would you want to consider a clinical trial for promising new treatments? Are you willing to be more patient with PEG, which can take a longer time than HU to reduce PLTs.
What may matter the most is quality of life. Both of these medications can have significant adverse effects that diminish quality of life. Both can have significant benefits that improve quality of life. There is no real difference in traveling with HU or PEG. Taking care of small grandchildren has no bearing on the treatment choice providing you are following proper handling instructions for the HU. What matters the most to you in determining quality of life? Which medication choice best supports that?
Wishing you all the best as you move forward in figuring out your next steps.
That gives me a lot to think about . I never wanted to go on HU but then I realise no one really wants to start any medication . My goals would be to keep my quality of life as I have at present . And I know everyone is different and no one can predict what would happen with either an increase in HU or anything else . At 67 I want to be able to do what I currently do as I’m aware of clock ticking and have a 35 night cruise booked in Feb . Thank you for replying .
Perhaps what will make the most sense is to wait until after your cruise to make a decision about whether to try PEG or not. In the meanwhile, you could make a small HU dose increase just to see how you respond. Some take a few more 500mg cap per week. One can also use the smaller dose increments of hydroxyurea available in the other formulations like Droxia (200,300,400) and Siklos (100). These would be options to discuss with your MPN care team.
The 35-day cruise sounds great! I did my first cruise a couple of years ago in the Mediterranean. It was fabulous. I am looking forward to cruising again. I hope you have a great time.
I think at the back of my mind is what I’ve read about the benefits of interferon in some cases halting or slowing the possible progression of ET . Whereas HU does not have these benefits.
If reducing the risk of progression is one of your treatment goals then it is reasonable to be considering one of the interferons based on what we know now. Understanding the impact of the interferons on progression free survival in MPNs is an important focus in the ongoing research. Not everyone is convinced at this point.
I believe that the interferons offer a better chance of progression free survival. I have an additional non-driver mutation that increases my risk of progression, so this was an important part of my decision to switch to the interferons to treat the MPN. Note that I had already progressed from ET to PV and my JAK2 allele burden was increasing. I also believe that the allele burden is a valid biomarker for our MPN status. This is a time when less if more in terms of treatment outcome.
I found the interferons to be more effective than HU for both thrombocytosis and erythrocytosis. The interferons have also been much easier to tolerate than HU for me. Note that this is for me. My response does not predict how anyone else will respond. We are all different.
You do have a caution to evaluate in considering switching to PEG. You will have to work with a MPN Specialist very familiar with using the interferons to determine if the risk/benefit profile is in your favor for PEG. You may respond better to PEG than HU, or not. There is no way to predict this. You will have to decide whether the putative benefit of decreased risk of progression and possible better control of the thrombocytosis justifies the intrinsic risks of PEG in your case.
You do not have to keep increasing doses. I started on low dose weekly which is now just monthly . Dose 45. It is completely dependent how your body responds. It takes a while but no pressure to go onto high doseage by my MPN consultant . 🤗
Hi, that’s really interesting to read that aspirin lasts three days. I started baby aspirin in September 2023 and omg I have so many bruises. I had an accidental fall a few weeks back and it resulted in 15 bruises. I will discuss with my Team in March at next follow up,
I understand your concerns. I was diagnosed 10 years ago at age 50 (CALR+ ET). I started on 500mg of HU per day and over time that has increased to 2000mg per day. I still feel fine with no symptoms or side effects.
I like to travel so the lifestyle implications of Interferon are a major concern for me.
I think a small increase from one tablet a day to adding an extra tablet (say on weekends) isn't as bad as you think. I hate HU and hate every increase - it's just the idea of it all but what else do we do?
Ensure your specialist has good knowledge of MPNs and carefully consider their advice. Most of all - enjoy the cruise and stay healthy.
Thank you . I’m aware that then it could be add another add another until I am on a high dose . I am interested in the thinking that interferon can slow progression and I think it’s that that is clogging my thought process . I’m not good at making decisions My thoughts whirl round . If HU didn’t suit me it would have been so much easier but no side effects .
I’m going through the same thought process. My specialist mentioned interferon for the first time recently and that threw me into a bit of a spin.
I travel a lot and the thought of travelling with six months supply, airport security, ice packs, sharps, risk of it getting too warm or too cold really sound like a hassle.
But, as you say, there are probably some treatment upsides with interferon.
In Australia we have Pegasys (not ropeg) and ideally I would like to wait for ropeg or there is a promising trial taking place for a CALR antibody (potentially a cure).
So I’m seeing a new specialist who focuses on MPNs next month.
I’ve been on hydroxy for 10 years. Started at 1 tablet per day, gradually increased to 4 tablets a day. It been stable the last few years varying between 3 and 4 tablets daily.
I am now 67 and have been on hydroxy for nearly 4 years now on 1x 500 daily . I resisted it for several years and reluctantly started it with the hopeful idea that the low dose would do the trick . It did reduce them from over 1000 to hover between late 700s early 800s where they stabilised . As I feel well I don’t want to rock the boat but also don’t want to end up on a high dose or be too late to try pegasys especially if there are benefits to slow progression .
I absolutely understand. I hate putting those tablets in my body but I also don’t want to have clots and the potential downsides with that.
I’d suggest raising all these feelings and considerations with a haematologist that you trust. There are many factors to consider.
I’m no doctor but I think at 67 and only taking one tablet a day you are in pretty good shape. I’m 61 and take 4 tablets but my specialist wants my platelets under 400.
Hi. I'm 46 diagnosed with PV when I was 40. At diagnosis my hematocrit was 52. It was brought down by weekly phlebotomy to 48 after 6 weeks. I didn't want to take medication. I have 5 children and the thought of adding side effects from medication terrified me. At the same point, I couldn't go on with bi-weekly phlebotomy which wasn't lowering my hematocrit and was making me anemic. I changed doctor's and went to NY. After 3 months I began Pegasys. My experience wasn't positive in regard to side effects. I was taking the lowest dose, weekly. Although it was successful in lowering my hematocrit and keeping me phlebotomy free the side effects were life changing in a bad way. I only had 2 days a week that I wasn't exhausted and pain free. Apparently I'm extremely sensitive to medication. After month 4 I stopped taking Pegasys.
Once Besremi was FDA approved I began treatment. While it's still an interferon, it's time released therefore less frequent doses. For me it's been a much better experience. My PV is controlled and when side effects become too much for me to handle I talk to my doctor and we stretch out the length of time between doses. For several months I was taking the dose once every 5 weeks. I'm back to once every 3 weeks now.
In February I'm going to have the allele burden checked so we'll know if that's improved since taking interferon. My other option is to stop Besremi and take Jakafi. We were hopeful that taking interferon would give me longevity, a better chance of no disease progression, and an overall better quality of life. Unfortunately, I don't tolerate it well so that's a major deciding factor.
I hope that by me sharing my experience and journey it can help you. Enjoy your cruise and I wish you good health and happiness!
More current information indicates that taking aspirin twice daily is necessary to achieve and maintain effective control of thrombotic risk in MPN's, but especially in ET.
Once- versus twice-daily aspirin treatment in patients with essential thrombocytosis
"In conclusion, twice-daily dosing with low-dose aspirin provides a more consistent platelet inhibition compared with standard once-daily dosing in patients with essential thrombocytosis."
Aspirin in essential thrombocythemia. For whom? What formulation? What regimen?
"Plain aspirin should be preferred over EC aspirin because some ET patients display poor responsiveness to the latter,..
When treated with the once daily aspirin regimen, most ET patients do not display virtually complete inhibition of platelet TxA2 production persisting for 24 hours, which is necessary for the prevention of thrombosis.
This phenomenon is attributable to the increased daily platelet production, which causes the presence of a high number of immature platelets with non-acetylated COX-1 in the circulation.
Several studies showed that twice daily aspirin administration overcomes this problem."
peg interferon was a lifestyle change for me. I was previously on Hydroxy. Interferon has been no problem. I travel & work shifts on sailing boats & have taken interferon with me . Keep it in its packing in a small thermal bag & it stays cool until I reach destination s. Getting the correct dose for your body takes a little while. But now on 45 per month I usually inject before I travel & not needed again until home . Much easier than remembering tablets at all hours due to time zone differences. So glad I moved to Interferon it is definitely worth trying . Julia UK.
Hi I’m in the same dilemma. I was diagnosed 22 months ago with ETand started on 7 hydroxycarbemide a week and quickly had to increase to 9 a week. I’ve had quite a bit of hair thinning which I hate but otherwise very well. I too have a busy life and look after my 3 year old grandson every Friday. My platelets have not gone below the 400 that my haematologist recommends but he has now agreed I don’t have to increase the dosage if they stay below 600. I saw him just before Christmas and expressed my interest in trying Pegasys . I’m very concerned about skin cancer risks on hydroxycarbemide. I used to sunbathe a lot when younger and now have less hair on my head.
How do you manage the skin cancer risks?I would love to be able to relax a bit more in the sun.
I have been referred for a chat with the specialists at Guys and will see if they think Pegasys might be worth a try. Are you under a specialist? Deep down I’m hoping to try it and hopefully have no trouble . Do let me know what you decide.
No I am not under a specialist and am not having a very good relationship with my consultant . I have been under her for about 11 years now . We had a good relationship until a couple of years ago when I reached the age recommended for treatment . Until then so only saw her 6 monthly and remained on aspirin only . Platelets were stable in 700s -800s for many years but rose to 1000 and as I had reached 60 I reluctantly agreed to start HU. I started on 3 a week then 5 and now 7 . I was hopeful a low dose would suffice but now she wants me to start increasing as platelets are stuck in 800s . I have never done as I am told having refused reduction treatment for many years and constantly asking about my hypothyroidism as neither my gp or consultant have ever been interested and I have resorted to having my own blood tests done and thyroid UK advise me on them . I am of the opinion that your health should be looked at as a complete picture . Having declined an increase in HU I am supposed to be considering what to do before I speak to her on Friday . I can imagine her reaction if I ask about seeing someone else but have asked on here about others in my area and if they are seeing a specialist . I just don’t know what to do . I also look after my 2 year old grandson each Thursday. We sound in a similar situation . How did you get a referral to Guys ?
I explained to my haematologist that I was not keen on ever increasing my dosage of hydroxycarbemide because of my concerns about skin cancer. I then said I was interested in Pegasys . I asked if I could have shared care with him and Guy’s. I was amazed how compliant he was and he has made a referral to Prof Claire Harrison. He told me what a lovely lady she is. So I’ll see what happens next.
I know some people have had to ask their GPS for a referral.
I hope your appointment goes well. Please let me know how you get on.
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