Questions about switching from hydroxyurea to in... - MPN Voice

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Questions about switching from hydroxyurea to interferon

Island-Lady profile image
18 Replies

I am ET Jak 2 positive, age 71. I have been taking a low-dose, 500 mg of hydroxyurea every three days, for the last year and prior to that I took the same dose every other day. I reduced the dosage even though my platelets have not gone below 600, because I was just too tired with the higher dose. I am normally extremely active, swimming in the ocean or hiking daily. Lately I’ve had to really limit the amount of exercise I get and some days and so so so very exhausted. My last blood test showed that my platelets had gone up slightly and I am due for another blood test and consultation with my hematologist. I have recently been developing symptoms of nausea in edition to the extreme tiredness. From my understanding, which is very limited, interferon can actually cause remission which is what I would like. From the little bit of reading I’ve done I understand that I would have to stay on a dosage of hydroxyurea while the interferon begins to take effect. I would really appreciate hearing other people‘s experiences who are Jak 2 positive ET with switching from hydroxyurea to interferon. I thank you in advance. This site has been wonderful and I have learned so much.

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Island-Lady
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18 Replies
charl17 profile image
charl17

Your issue seems to be platelets. My platelets responded very quickly to Pegasys. I was off of HU for ten weeks before starting INF due to toxicity, so it's not clear that you would need to phase out HU.

Pegasys comes with its own set of side effects. I put up with them because I had no other option. For me, it was worth the struggle. They might be hesitant to start INF for you because of your age. I was 69, in good health, with a strong support system. After 3.5 years I am on a very low dose and am hoping to achieve remission so that I can stop treatment.

These are my thoughts and experiences. You need to discuss with your doctor.

Island-Lady profile image
Island-Lady in reply tocharl17

Thank you so much for sharing, it gives me hope. I hope you go into remission soon!

hunter5582 profile image
hunter5582

While I have a JAK2 positive PV, it includes thrombocytosis. It was platelets that responded the most rapidly when I started Pegasys. I went from the 700's to the 400's in about 8 weeks on 45mcg of PEG. The PEG was also much easier to tolerate the the HU. I was not able to tolerate the HU due to the toxicity even at low doses.

We are all different in how we respond to each of these meds. Wishing you success moving forward.

Island-Lady profile image
Island-Lady in reply tohunter5582

That is hopeful news. Wishing you the very best!

Sam2022 profile image
Sam2022

I am J+ ET positive. Started HU 14months ago with 1/day. then switched to PEG after 4 months of HU from initial platelets # ~850 to 530; then started PEG at 0.25ml/wk then 0.5ml/wk, the platelets # drop to ~300. Due to the low WBC and RBC, I cut the dosage of PEG to 0.4ml every 2 weeks. It looks like the WBC and RBC back to normal range (need time and test next visit). The reason to switch from HU to PEG is also the possibility of remission. Will test the MAB to see whether the allele burden decrease... I don't feel much side-effect from PEG except my both lower leg/feet feel cold and my knee is not felt as strengthful as before. No fever, no cold symptom, etc. Good luck with PEG.

Island-Lady profile image
Island-Lady in reply toSam2022

Thank you so much for your hopeful reply. Wishing you the very best!

EPguy profile image
EPguy

I'm PV with ET features. I switched last Feb. I stopped the HU after the 1st month and blood counts have held steady on low INF (Besremi) doses. I do generally feel better on Bes vs HU, with exceptions as I've posted.

While on HU I found sometimes I needed an extra pill to feel ok, the balance was hard.

Dr wants me to increase the Bes, as with all our meds, higher doses generally means higher side effects.

Has your HCT responded well to HU? Its response seems to lag the other bloods for many (not all) here on INF.

Island-Lady profile image
Island-Lady in reply toEPguy

HCT seems fine. Thank you so much for your response and I wish you the best of luck and health!

Solyesh profile image
Solyesh

I am ET Jak2+ as well and was on HU for about 6 months at a fairly high dose (1,500mg/day (3 pills a day). This led to unacceptable side effects for me (including skin hives; nail discoloration; fatigue) - so we switched to Pegasys (I also pushed for the Peg as I am hopeful that long-term it might have a molecular benefit as well as a hematological one). I started on a fairly high dose of 180mcg/2 weeks (as I was coming off a high dose of HU). We transitioned the HU for about a month going down to 500mg/day (1 pill) as I started the Pegasys.My platelets and WBC reacted immediately to the Pegasys and were brought into a range with which both I and my MPN specialist were happy. And importantly from a quality of life standpoint with no measurable side effects.

Unfortunately about 2.5 months in, my liver readings went off the charts (liver toxicity is a known potential adverse effect) so we stopped the Peg for a month. Liver readings came back into normal-"ish" range so we started back up with half of the previous dose (90mcg/2 weeks). Again the blood work came back with good readings after first month on lower dose so we continued. Unfortunately again, the liver numbers climbed (not as bad as previously but still above range). My MPN specialist and I decided to continue at current dose to see if my liver might "adjust" - having another blood test next week and hoping for the best. If not, likely to take a break again and then maybe try at 65mcg or even 45mcg/2 weeks (assuming platelets and WBC are good).

A lot of this is trial and error until everyone finds the combination of medicine/treatments which work best for them!

Island-Lady profile image
Island-Lady

Thank you so very much for your reply. I wish you the very very best!

lhammy66 profile image
lhammy66

I was on 2 grams of hydroxy daily for my PV but my counts were still an issue so had Peg introduced first at 45 mcg weekly and a reduction in hydroxy. I’m now on 95 mcg Peg and 500 mg hydroxy plus venesections monthly and for the first time my bloods are looking ok - it’s taken three years to get to this point. I also had some concerning liver indicators but these settled. I am living with side effects but at least for the first time my brain is back with me and I do have days with some energy- I then have to be careful not to get over excited and use it all up! So it’s different for us all. For some like me it’s a balance of several treatments.

Island-Lady profile image
Island-Lady

Thank you for your reply. I really know what you mean about low energy. Each day I have to pick and choose just a few of the many things that I should do, choose a few priorities, and try to make some of them fun! Wishing you the very best

JaK2ET profile image
JaK2ET

When diagnosed with ET (Feb 2019) I was just below age 60 and was initially put onto low-dose Aspirin plus supporting medication (to reduce risk of GI damage). Then after nearly a year (late Jan 2020) I was moved to Hydroxycarbamide/Hydroxyurea, beginning with one capsule a day and later moving up to 8 and then 9 capsules a week. This treatment successfully brought my platelet counts down to well inside the normal range and seemed to be quite well tolerated by my system. However, I did have a bad leg ulcer which was not healing (two previous ulcers, which arose before I was on Hydroxycarbamide, did heal spontaneously, albeit taking many months); there was a suspicion that the chemotherapy might have contributed to the origin, or at least to the non-healing, of this ulcer and it was decided to switch me to immunotherapy with PEG-Interferon.

I stopped taking Hydroxycarbamide just over a year ago (Jun 2021) and (without any overlap between the two treatments) moved onto Interferon. Unfortunately the transition did not go entirely smoothly and I had to pause the new treatment for some weeks, during which time the platelet counts went back up again. When the Interferon resumed it was at only half the dose originally intended (to see if I could tolerate the lower dose) - I had a 90 microgram injection fortnightly instead of weekly. Gradually the platelet counts came back down into (the upper end of) the normal range.

In terms of comparing the treatments, Hydroxycarbamide has the advantage of being easier to take. PEG-Interferon requires injections and for quite a while I didn't feel up to managing these myself at home, so I went to the big hospital for them (now I am doing them myself at home, though I find them rather stressful). The ulcer received several months of expert attention from the local nurses and has now scabbed over (nearly healed). My mental health seems worse on the Interferon: I can do things that I enjoy but struggle to find the energy and motivation for the things that need doing but are more of a strain or burden. Like some of the other contributors to this thread I often feel a crushing fatigue. In fact the Interferon almost seems to produce an effect a bit like "post-viral fatigue syndrome" or ME (myalgic encephalomyelitis) - I wish I understood this better, so that perhaps I could take some steps to help myself, as the fatigue is significantly life-limiting. How much tiredness is down to the ET illness itself and how much is a side-effect of the medication treating it?

Enough of my rambling! I hope that you quickly find a treatment that suits you well. Good luck!

EPguy profile image
EPguy in reply toJaK2ET

I agree on some extra fatigue since switching to INF from HU. But INF has generally reduced my malaise which is worse for me than fatigue.

You mention post-viral. This is getting a lot of attn lately bec of covid. I have suffered from long covid, less fatigue than a bunch of other things that overlap with MPN. But fatigue is #1 item for long covid. Not likely but-is it possible you've had Covid, maybe a non symptomatic case? This could cause fatigue. Long covid generally improves over time, if slowly.

The mental health issue is a known risk with INF, and worth watching and discussing with Dr. Maybe you could discuss with Dr an option for low dose HU with a further reduced PEG? I think some members are combining these.

Another option to control PLT could be to find whether you qualify for the trial of Bomedemstat. Some members are in this and doing well. It's designed to reduce platelets.

Island-Lady profile image
Island-Lady in reply toEPguy

Oops…that was my reply to jak 2 et, Who’s post I believe you just replied to

Island-Lady profile image
Island-Lady in reply toJaK2ET

Thank you for sharing your experience. I know that it’s often hard to determine what is causing tiredness, etc, as there are always other factors. As of now I think that I will ask for a very low dose of interferon. I wish you the very best in your process and hopefully your energy will increase soon

EPguy profile image
EPguy in reply toIsland-Lady

Whoever we replied to here, you're right it is hard to keep track. But we're all in it together for support and learning.

My Dr is not agreeable to the very low, or just low, dose, a subject of my recent post. I think we should be free to control our care (with Dr approval.)

Island-Lady profile image
Island-Lady in reply toJaK2ET

Thank you so much for taking the time to reply. I accidentally sent my reply to the next post so you can read it there😊 Wishing you the very very best

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