Interferon or Hydroxycarbamide?

[Basil4sybil]

Hi all, I've beed recently diagnosed with Essential Thromcythemia and have been presented with two treatment options, I guess it will all be around side effects and was looking for information on peoples experiences. I understand it will come down to my personal reaction, has any one been on both? I'm a 57 year old fit and healthy male. any feedback would be very welcome.

[Scottishterrier]

Hi I was in your position in 1995 I had a blood clot to the liver and was offered both of these were. What I was offered but my decision was easy as about two weeks before there was an article who was on interferon and she opened up about the side effects of interferon and they were horrendous at one point she was even considered in committing suicide and other mental side effects so without any hesitation I asked about hair loss but he says no you don't but makes you nauseous but there is a drug called domperidone and I have no problems at all and still on it Stay safe

Scottish terrier

[Mirror368]

I was diagnosed in June 2022 with ET JAK2. My platelets were at a one time high of 700. I am now 515.. I have been taking low dose Hydroxyurea, currently, 500 mg one four days a week. I have minimal side effects.

I suggest you look up each drug name on the search line and you will find many reviews on both.

Best wishes, Eileen

[Mishie14]

yes, tried both and my experience is taking HU was worst decision due to chemo side effects that ruined my quality of life. Mouth sores, aching jaws, serious nausea, splitting headaches, brain fog. Then tried anagrelide that didn’t go well but for different side effects—all cardio related. Been on peginterferon for nearly 18 months and it’s working fine. Have had two skin inflammations at start treated by dermatologist. Have noticed since dose upped to 90 mcg that I do feel occasional sadness. I reach out to my little schnauzer for some furbaby love and try exercise to snap out of it. Never been serious. We all react differently so you may have to try as I did to see how you react. Please note the three drugs are very different in how they address platelets. All three helped reduce my platelets but two of them came with unacceptable side effects. There is also a cost difference with HU and anagrelide the least expensive. Peginterferon is injected. It’s availability is in question in many world areas due to manufacturing change over. I have had no problems getting it in Midwest US. Good luck!

[Cja1956]

I was diagnosed with ET Jak 2 in 2008 and then MF in 2019 although my Hematologist thought I probably had it earlier. I remember asking my original doctor about Interferon and he said too many side effects and my mpn specialist said the same thing. I’ve been on hydroxyurea on and off for years. It worked well for the first few years but then it started to fail. I would probably start with that and see how it goes.

[Janis12]

Hi, I was diagnosed with ET five years ago and was put onto hydroxycarbomide and a blood thinner straight away due to my age at that time (61). It worked okay for some time but my platelet levels started to creep up and we had to increase my hydroxy dose. I experienced hair loss with hydroxy, I would say about a third of my lovely long curly hair which really upset me. I also developed gastritis so had to take meds for that. I decided that I would like to try peg interferon myself, the haemotologist was very obliging and commenced me on a low dose every two weeks whilst at the same time gradually reducing my hydroxy. Pegasys provided a good response with ongoing tweaking of doses but after a year I decided to stop pegasys because of the side effects. I am very active person and I found that my mood had become so low I struggled to find the motivation to continue with all of my activities. Hair loss is a listed side effect and I did notice this (on top of the hydroxy hair loss). The other side effect I noticed whilst out cycling was an occasional missed heart beat which eventually was followed by a cough. I reached out on this forum and asked if others had experienced any heart issues and received two responses, both active males, started with similar symptoms which unfortunately developed into irreversible heart/lung damage. I am now undergoing further heart tests but have noticed a reduction of symptoms since cessation of this drug . I feel lucky that the good folk on this forum 'put me in the picture' before I continued any longer with it. So I am back on my regular dose of hydroxy and my platelets are okay...ish at present but I am being reviewed more regularly for a while. It is a big decision but I think when you are an active person you become quite finely tuned to your body so you will be acutely aware quite quickly if something does not agree with you. For me the hydroxy has turned out to be the lesser of the two evils. Good luck.

[hunter5582]

I have been on both. I was refractory to an intolerant of hydroxyurea. I experienced severe oral ulcers, canker sores, leukoplakia, thrush, and constipation. I have responded much better to the interferons (Pegasys/Besremi). They are both more effective and much easier to tolerate. There has been some side effects, including itching, occasional rashes, and elevation in liver enzymes (LFTs). The itching/rashes are well controlled by a daily dose of cetirizine. The LFTs returned to acceptable limits with a daily dose of Milk Thistle Extract. The interferons have not only been effective for cytoreduction but have also reduced my JAK2 VAF from 38% to 10%. My quality of life has improved as well. I feel better now than I did 10 years ago.

You are correct that we all react differently to these medications. My response does not predict yours. You will need to decide on your treatment goals and risk tolerance to make this decision.

Wishing you all the best,

[EPguy]

I've been on all three of our common meds, HU, IFN, and Rux, but for PV. I generally felt better on IFN vs HU, but had more malaise on IFN vs HU.

If you have existing risk of depression or the like, or if you have any autoimmune risk, IFN will be touchy. I had none of these but still ended badly on IFN with minimal warning. But a vaccine was involved as in my many posts.

IFN does work very well for many as we see here, and it can reduce your mutation. It is worth more Dr discussion. Some Drs still needlessly rule it out right away, these Drs may be more familiar with the older IFN types, which were used at high doses and in a harsher form. But even with the new types, if you have any of those risks it does suggest careful consideration. Limiting your dose to the lowest required for blood count control, and watching for any of the worst case adverse effects and acting fast, is one way to minimize the risk.

[Su51]

hey, I’m 49, I’m on quite a high dose of peg interferon (135) which is now taken fortnightly mainly due to supply issues at the moment. I started on 90 weekly in April & then went up higher my platelets dropped from 1.5m to 450. I take before bed & to be totally honest I’ve had a few bone aches mainly my wrist, a little fatigued but had that anyway, But other than that I’ve had no issues & feel a lot happier now my platelets are practically normal levels. I guess everyone reacts different but it’s been fab for me.

[monarch5000]

A substantial % of 50-something year olds with ET end up progressing to myelofibrosis (or worse) in their late 60's and 70's at which time they may be too old to survive a stem cell transplant. Interferon is the only known way to slow or halt this progression so it's a no-brainer choice for most patients unless they have a pre-existing medical condition that is incompatible with it.

Interferon is not chemotherapy like hydroxy...it's an immune system boosting substance your body already produces in small quantities.

[Babomanfred]

Diskussion Jakavi with your Doktor i habe Good experiences Regulation my platelets dringend a PV

[Pachena]

Hi Basil,

I’m a 62 year old fairly fit female diagnosed with ET JAK2+ early 2023.

I was asked to take a daily 100mg aspirin and put on Hydrea. I was on a low dose and I put up with it for 6 months. It was a very trying 6 months with digestion issues and mouth ulcers. I was very unhappy on it and said I’d had enough.

I went off the Hydrea for about 6 months and was put in Pegasys in June this year. My experience has been far more positive. The side effects are minimal and my results much better. I had gone from weekly injections to 10 days to now fortnightly.

I feel much better and also comforted by the knowledge that my skin is less likely to turn to cancer and my MPN not likely to progress.

Best wishes with your decision and journey forward.

[gilded]

Hello! I was diagnosed with ET (CALR) mutation getting on for 3 years ago at the age of 79. Dose of 90mcg Pegasys interferon fortnightly. Platelets reduced over 3 months. I have not experienced any side effects with interferon. My consultant is reluctant to prescribe HU . Worldwide short supply of interferon is problematic so I may be prescribed Besremi. Waiting to hear. Trying to eke out current supply of interferon..

[Cedra]

There another option which is to not take any medication, except perhaps low-dose aspirin. It a question of which risk are you happier with. The higher platelet count carries a risk of thrombosis or, at very high levels, of bleeding due to aquired von willebrand disease. The medications carry risks of a wide range of side effects. The level of risk of thrombosis varies dependent on which mutation you have. It's quite low with CALR and triple-negative, higher with JAK2 and MPL. The level of risk is also affected by any other risk factors such as heart diisease, circulatory problems, diabetes, smoking etc. Ultimately it's your decision which risks and level of risk you prefer to live with.

[Amethist]

Hi. Just to add in my personal experience of no treatment, so you are aware of that option too.

I was diagnosed with ET aged 49, 8 yrs ago. A mix of symptoms took me to GP for a blood test and along with a number of vitamin deficiencies, I also was dx with ET and platelets around 1400. No history of clots so low risk. All symptoms went quickly with sorting out my deficiencies. Over the years, platelets have varied from 700’s to 1650 ish and haematologist had no explanation . Several times I had 2 blood tests taken within 1 hr at the same hospital and the difference in my platelets count was around 300. This greatly confused the haematologist and again no answers or explanation. There were as puzzled as me.

I have done a lot of research on pubmed, drugs.com and also sought a 2nd opinion from an MPN specialist, both of which I highly recommend. I have thoroughly looked in to diet ( with having vitamin deficiencies) and have changed my diet ( especially with regards to avoiding sugar anything processed) and added in supplements.

I have refused all meds offered. I take ½ aspirin every 3 days or so . Still lead a happy healthy active life. Platelets have no impact on my life at all.

So I guess it would depend on how ET impacts the quality of your life, what health risk it could bring to you personally and whether you consider the risk of side effects too great. Don’t feel rushed into making a decision. Keep asking questions and do lots of research.

All the best.

[Bridie123]

Hydroxy for seven years, horrible. Peginterferon one year, much better.

[LeoTravels]

Hi Basil4sybil,

I have been on both. Hydroxy was much better for me (no side effects) than interferon - which made me feel sick. And the tablets are just easier to handle than injections that have to be temperature regulated. It’s a personal choice which you can only make after trying them. I also found the Hydrea (which I was terrified to take because I thought my hair would fall out- it didnt) controlled my platelets better.

Good Luck.

Leo Travels x

[Smdg]

I was diagnosed in 2004 and was on hydroxycarbamide for many years without any side effects. I moved to interferon 2018 because the hydroxy was no longer effective at keeping my platelets down. I didn’t have any side effects from interferon. In 2022 I started having mouth ulcers and became unwell but the disease had changed to myleofibrosis. I had a stem cell transplant in October 2023. The medication reacts differently in each person so it’s not easy to advise you

[harev]

HU is a chemo drug and that is never good for your body. Interferon slows down the progression. I have been on both. Besremi has had little or no side effects and my counts are almost normal after 6 months. The HU would only be a option for me again if my insurance would not cover the Besremi.

[DoubleF79]

Hi. 45 y/o female, diagnosed 5 years ago. Tried Interferon for 6 months but it didn't work. Been on Hydroxy ever since. Only side effects have been hair loss and fatigue but both are minimal and manageable. All the best & please feel free to reach out if you need any advice / support.

[ainslie]

you’ve had some pretty good answers already, the bottom line is generally speaking Hydroxy is easier to tolerate but Interferons can for a subset possibly slow the disease , it can reduce allele burden for some but we don’t really know the significance of that yet although it seems to be a good thing. The good news is you have the option of both drugs so if you want or need drug treatment then if for example you tried Peg/Bes and it didn’t agree with you you could come off it and try Hydroxy. Be alert to some of the things EP guy mentioned about autoimmune and low mood etc with interferons.

[ciye]

You don't say what your platelet numbers are. Most specialists will providing there are no other health risk, will leave starting meds other than aspirin/clopidogrel 60 some 65.You can ask for a referral to a specialist.

Take as long as you need to decide. Personally my quality of life has not been improved by meds.

[Solyesh]

Have been on both. I was HU intolerant with horrible skin rashes, fatigue and a general lack of energy (which for me as a very active person was the hardest side effect). I switched to Peg interferon almost 3 years ago at this point and after a lot of tweaking have been great. All of my blood numbers have been within normal limits for the past year. I am currently on 90mcg bi-weekly and have had no measurable side effects. Am also hopeful as being on the "younger" side of things that Peg might help reduce my allele burden and potentially stop or slow any progression.

[Exeter21]

I have ET diagnosis 2 1/2 yrs ago . I was given no choice of drug then and put on Hydroxy. I was very ill on it . Gastric problems, exhaustion, hair loss. I was used to being active & sailed & cycled. I could not function on this drug so read up on other drugs. Interferon is very expensive hence for sure why not offered . After a few emails & taking myself of Hydroxy as feeling so ill I was given Peg Interferon. Life changer for me & my hobbies. Fitness became normal . No side effects once dose correct. I am now 45 per month dose & bloods normal .

However current big shortage on Peg Interferon means we are rationed. I struggled to get my last dose prescribed .

Only one syringe for 3 prescribed so currently reduced my travel options . We are all different & many tolerate Hydroxy well but my body told me it didn’t . 👌