Hi.I have been on Hydroxy for almost 9 yrs
1500 daily 1000 sat 500 sun.
No side effects
Controlling platelets 500 -700
Also on 75mg asprin
I queried long term effects of drug ( I want to live till 93yrs)
Consultant suggested Peginterferon.
Side effects look horrendous
Can anyone give me any feedback? Would it be best to leave well alone.
Thank you xx
Hi Lynne,
You did not mention your age. That seems like a pretty high dose of Hydroxyurea. Long term use has possible side effects,
Having been on hydroxycarbamde for 11 years I recently had a face to face review with a Mpn specialist to talk about switching treatment.
Despite some niggling side effects with hydroxycarbamide the agreed outcome was to stick with it rather than switch to peg and risk some of the possible side effects that could arise in my case.
I’m glad to have had that discussion and I think it’s something that needs to be done on an individual basis as no two patients are the same.
If you are Scotland or the US go for Besremi. TBH Pegasus dose have potentially nasty side effects but they are rare. It also potentially has better longterm benefits [not yet fully proven] such as stopping or slowing the progression of the MPN. I advocated for it for myself and had no adverse side effects apart from reducing my Neutrophols below 1. I'm on a break at the moment. Don't want to be alarmist but there were studies that long term use of Hydroxy may increase the risk of progression to MF. These are all poisons.
If you go on an IFN then slow & long appears to be good advise.
I hadn’t realised Besremi is openly available in Scotland. I remember it not being approved for prescribing (for PV) by Nhs Scotland last year and I cannot find any update on that. Is this a recent development?
IFN is an excellent option for many pts. It can control blood counts and reduce the mutation, something we pts like. It did both these quite well for me. Are you having no HC (Hydroxy) side effects at all? Skin lesions/cancer, hair loss and cracked finger nails are some known ones. If no then HC is giving you very nice results. There is some concern on AML risk but this seems less so recently.
Has your Dr ever ordered a mutation test (percent CALR mutation)? Also did they look for any other mutations? IFN can reduce the mutation in CALR as in this report:
ashpublications.org/blood/a...
" IFNα induces high rates of HRs (blood count control) and MRs (mutation reductions) in CALR-mutated ET, and that the presence of additional nondriver mutations may influence the MR to therapy." Knowing about any non-driver mutations you might have can be useful.
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The "horrendous" side effects for IFN are in fact rare, but enough that the US FDA has a "black box" warning on the label. IFN is the only MPN drug with this labeling. You can see in my posts and some others the worrisome effects are real for the unlucky few. PEG and Besremi IFN share these rare risks. Autoimmune (A-I) reactions are a rare outcome of particular concern.
Are you still suffering peripheral neuropathy?
MY MPN specialist does not Rx IFN, in part I think from my story. But most are ok with it.
You're not likely to qualify for cost coverage for Besremi with ET since it is not yet approved for that anywhere I'm aware. Most the info for IFN is with PV, but trials are continuing for ET.
Hi @ Lynne-G,
I was given a choice of HU or PEG as I've PV. I asked the question on this forum and, most recommended PEG. I'd say, with each dose increase, I need to overcome the fatigue and I do. As I understand it, it can also slow down/ and or reduce the MPN.
I'm now alternating weekly doses of 135 to 180 but started on 45. The injection is quite painless and easy to do, after the first.
Everyone is different but I'm happy to be on PEG. 7 months so far 🤞
You can always contact the nursing team at Blood Cancer UK, who would be happy to support. I have used this service too.
0808 2080 888
Please keep us posted x
Hi .. I am in NZ and 68 . Just had the same talk with my haematologist last week .. I said I feel I am tolerating the hydroxyurea ok .. tired ness is the biggie. The aim of hydroxyurea is to reduce platelets count and reduce risk of thromboembolic events …also she said difficult to know real benefit of treatment with interferon .. it may reduce secondary myelofibrosis.. also my calr positive means I am more prone to infections/virus just had covid !!! Interferon may help with this.. if I was younger she would say go for interferon .. I am tolerating were I am so status quo for now … as the side effects as you say can be bad .. I would like to have a few more good years of feeling ok ,.. sorry but of a ramble.. however just my view .. look after yourself 😊
Thank you. You take care too.Lynnr.
Can you please explain what is “calr positive”?
Hi Lynne G,
I was taking Hydroxyurea for around 18 months, platelets started at 1050 and dropped to 600, was taking 1500-2000mg per day. My Haematologist started me 2 months ago on Interferon (Pegasys) 90 ml per week self injected, and I really have no side effects except a sore tummy maybe once a week. Don't be put off by the side-effects list, it does not affect everyone the same - I have had no flu like symptoms and have travelled on an plane recently (Im in Australia) for 3 hours and had to delay my shot for 4 or so hours, Im finding injecting once a week much more convenient than stuffing 4 x pills down my throat each day.
Don't be afraid, you won't know until you try it how it affects you and you may find like me that it is much more convenient. You soon learn how to self inject also, the needle is tiny and you barely feel it.
All the best to you, from Oz 
Thank you so much for the re assurance. I'm seeing the consultant on Tuesday.
Safe travels
Lynne.
Hi
I too have been on Hydroxy for about the same time, I have 3 x 500 mg daily.
I was horrified to think I had to take this when diagnosed with Jak2 ET but I must say I really have no side effects. I couldn't take Aspirin as somehow that felt uncomfortable so am on Clopydogrel 1 a day. My platelets are well controlled and even now sometimes drop to below 500.
My take on this is if all is well with you now I wouldn't change, unless some dynamic new treatment comes along then I might give it a try.
As some say you don't mention your age so wanting to live to 92 is quite something to hope for but of course may be achievable!!
Hope you continue to be well,
Kind regards, Jenny.
Thank you Jenny ( I am 72 )It's a 50/50 decision. Seeing my Consultant next Tuesday.
Kind regards
Lynne.
We are all different in how we respond to the medications used to treat MPNs. I was intolerant of and refractory to hydroxyurea. I responded much better to the interferons (Pegasys/Besremi). The IFNs have been more effective and much easier to tolerate for me. In addition, the IFNs have reduced my JAK2 allele burden from 38% to 10%.
Given the long-term risks associated with HU, the actual adverse effects I experienced, and the potential benefit of reducing risk of progression, the IFNs are the right choice for me. Note, however, that my situation is different than yours. My response does not predict yours.
Suggest that you have a discussion with a MPN Specialist about your treatment options. Your treatment goals, risk tolerance, and treatment preferences are the driver factors in deciding which treatment approach your should take.
All the best moving forward.
I used peg for over a year and suffered terribly on it. My platelets barely budged. I did not tolerate it well. I lost my appetite and 3 stone developed bradycardia, poor mental health as the bradycardia left me terrified to go out on my own. I really wanted peg to work it simply didn't. I don't tolerate meds very well. Hydroxy is for me the better devil the vast majority of people find it is great. Have you seen a specialist to discuss your meds. Depending on your mutation there are other meds. I have ml and am waiting on Bomendastat but it's only in stage 3 trials so that's a couple of years away.
Hi, hope you have a good consultant, mine is very good, it helps. Hope it goes well, keep in touch, Jenny
Morning
it sounds as though you have few side effects well controlled platelets and good quality of life . A discussion is always worthwhile but on Hydroxycarbamide they told me if it stopped working they would consider something else but otherwise probably not . This sounds a simplistic view. But from your point of view it sounds like you are doing well . I appreciate they prefer platelets on low end of normal but no side effects to me sounds positive .quality of life to 93 sounds positive L
In my humble opinion I would leave well enough alone. If you are not having any symptoms, we have a saying here in South Alabama " don't poke the bear" lol. Interferon gave me horrible side effects when I took it 19 years ago for something else. I believe you will make it to above 93 if you continue on course.
hi lovely am 49 been on pegsy for just over 12 mth it’s been challenging am seeing my doctor at the hospital today to hopefully to talk abt changing medication x
I've been on Peg since February, 45mcg weekly, now every 10 days as platelets stable around 400-500 (it varies). The side effects are minimal compared to what was happening before (random muscle spasms, fuzzy thinking, sight loss of focus and dizziness - now almost eliminated). I usually get tired a few days after at the beginning but less now, I'm prone to depression but that has not increased although perversely it's better because I feel better. I take peg before bedtime so I can sleep the tiredness off. As for fatigue, yes I am, but that's because I'm 70 and still active so cannot tell.
If I had a choice of one injection per 10 days or tablets daily, I'd prefer the injection. As many have said everyone is different.
When you chat with your specialist, perhaps suggest a trial period....means more regular blood tests though to check your progress.
All the best
hi Lynne
I wouldn’t listen to the scare mongers, just be wary of changes in your own body. I was diagnosed with PV when I was 54 ( now 70) and put straight on to Hydroxi at 500 a day (with fortnightly vensections ) for 6 mths . My haematocrit was 74, quite high.
That worked fine, and for 14 years I took 1000mgs hydroxi daily ( NOT a high dose I know people who have been on far higher)
I have a leading professor of MPNs as my specialist and he definitely knows what he’s doing!
After 15 years I began to have skin issues ( red marks on chest and face pre cancerous blips) so 9 weeks ago changed to Pegasys.
I too wondered about the the side effects but so far touch wood am fine. Don’t forget ALL side effects experienced ever, have to be listed, but not everyone experiences them. Far from it. It’s a doddle to take - one tiny injection into your tum once a week. I squeeze a fatty bit and the tiny hair like needle just goes under your skin. I don’t feel it.
If you do go down that route then INSIST on starting on 45 mgs for 4 weeks and THEN 90.
This is your body. A slow start gives your body time to adjust.
Best wishes Louise
Hi Lynne, I've been on 90mcg peg interferon fortnightly for about 18 months to 2 years. Also 75mg aspirin daily. Platelets reduced significantly from 1600 to 450. No material Peg side effects. I'm 81 years old next month and live life to the full.
As you have heard here we are all different, and the side effects that we experience are equally random. I have only ever been on Hydrodroxycarbamide since my ET was identified in 2010 and I have many of the oft quoted side effects - but all are mild and when I looked at the alternatives and their side effects I decided to stick with what I know!
Hi Lynne, I’m 67 and had a choice of Hydroxy or Pegasys. I chose Pegasys. It stabilised my platelets within a couple of weeks. I started and have remained on 45mcg injecting fortnightly now. You need to be aware of effects on mood as it can cause depression. I had a really bad day on Monday needing to speak with my MPN Team. Mood was low, crying virtually non stop all morning. I have no history of depression. Long story short continuing on Pegasys, feeling much better now with reassurance from my MPN Team. I certainly wouldn’t want to stop it now, no side effects etc. Just research well so you can make an informed decision. Good luck with your next appointment. Keep us posted.
Ha worst thing is to read these side effects they are all rare. But like you I did same. Absolutely try Peg Interferon. Complete life changer for me. I came off Hydroxy due to side effects.
I inject monthly have more energy & no having to take daily tablets . Platelets came down to 300 & vary little. Worth converting to this drug like many of us have. I attended MPN conferences in past & it is having remarkable results . Julia UK.
I’m 81 female. Count stays around mid 370’s to 400 On Hydra for 4 years 500 ml every other day .. your dosage seems really high but I’m not a doctor!! But maybe ask why ..
Hi, I am 76 years old and have been on hydroxy since 2012. Very few side effects and platelets around 400. I take 1, 500 tablet daily, and have done so for about 6 years now so am sticking with that. I only see my consultant 6 monthly as I am deemed stable, thankfully. Your dosage seems high, would maybe question that.
Hi. I’m 44 and was on IFN for 6 months 3.5 years ago. It didn’t work for me but I had zero side effects. I’ve been on Hydroxycarbimide ever since. 26 x 500mg tablets a week as platelets still over 450. Is this considered a high dose? I don’t really have anything to compare to
Had a face to face last week as I requested it as hadn’t been seen since switching meds. Please do request in person appointments as they will see you. All the best.
Hydroxy Blood Numbers Experiences
Not yet Hydroxy !!
