ET Hydroxy/short break - Update

[azaelea]

I posted previously that I had temporarily suspended taking my Hydroxy with the agreement of my Haematologist. This was on 1st November 2022. On my telephone consultation two months later, after blood test , my platelets were acceptable at 314 and I continued without taking HU. However, I have just had my telephone call from a Dr. in Haematology ( not my Consultant) who has informed me that my blood test has now revealed a marked increase in Platelets in two months and are now 558. She has therefore advised starting HU again straight away. I did discuss with my Consultant at last telephone call the options of changing medication perhaps to Peg Interferon but this Dr. did not mention Peg. However I haven’t pursued the change as I had thought of going back on HU when necessary instead of Peg. as on reading possible side effects of Peg. Like anxiety, sadness, depression , flu like symptoms and many more disturbing things I thought “Maybe the Devil you know rather than the one you don’t” so, I’m back on my 500mg per day of HU as of today. Regards to all. Fran

[Cat1001954]

good luck

[Mostew]

Good job you had blood test done . Hope you see platelets decrease as quickly as rose .Carolyn

[Exeter21]

I think that Peg for me is better . I had same situation with HU but they left me off it for 4 months platelets went to 590. HU was reacting badly on me . I asked for Peg through Guys Hospital & approved. The side effects of it are dose related . Haemotology started me on weekly injections but my body rejected it & felt awful. However it bought platelets to 300 with 4 injections. Spoke to Professor Harrison who discussed it could be too strong doseage for me. Taken off everything for 6 weeks . Platelets back to 540. Now started Peg again on low dose every 4 weeks as suggested so body gets used to it.

This has proved successful so far & no bad reactions. Don’t read too much of side effects as we are all different & Peg definitely better than HU currently with me. Regards Julia 👍

[azaelea in reply to Exeter21]

Thank you for letting me know your experience with HU and Peg. I won’t dismiss changing from HU. Will see how it goes. I appreciate your information. Regards,Fran

[ainslie in reply to Exeter21]

could I ask you what dose of Peg you were on when you couldn’t tolerate it and what dose Prof H has put you on now

[Exeter21 in reply to ainslie]

I was started by Haemotology on weekly injections 45 measure I had to waste 45 as in 90 syringes. First week I was ok but very spaced out but from then on I started with v bad migraines day & night & tenderness on top of my scalp . I persevered for 6 weeks but it was intolerable head pain. Professor Harrison took me off it & left me 6 weeks. Headaches went after a week & health returned. Just started again this time 30 only once a month . No side effects so far. If body adjusts to tolerate this I expect it will be changed in frequency or strength to control platelets. They came down to 300 on it originally but intolerable frequency . Slow & low seems the answer . Julia 👍

[ainslie in reply to Exeter21]

thankyou for that very interesting information, I hope it continues to go well for you

[azaelea in reply to Exeter21]

hi again,Julia. I meant to ask you after your reply, were you a previous Migraine sufferer? I have suffered Migraine attacks all my life which more or less stopped after the menopause. This is another reason I’ve gone back on HU at the moment rather than change to PEG in case the headaches came back.

[Exeter21 in reply to azaelea]

Hi no never had headaches in my life until Hydroxy & then Peg . However migraines took a week of treatment before they kicked in . Never went & felt like a zombie not my normal lively self . Struggled badly . So glad I spoke to Professor Harrison as her advice to come off Peg for a few weeks then reduce doe appears a success currently. Migraine went after a week off it. Since on very low dose 30 I am still fine & dose will be increased very slowly as my body rejects most medications. Platelets gone up whilst off everything to 530 but I don’t worry about that as more important to reach a tolerable treatment not ruin day to day life. My Haemotology are good but better result chatting to Professor Harrison who is now helping advise to my local Haemotology. I have gone from weekly to monthly injections & feel very good 👍. Julia Exeter .

[azaelea in reply to Exeter21]

Thanks for your reply Julia. I’m so glad to hear the adjusted dose is working well for you and you’ve got your life back again. I wish you continuing success. x Fran

[Exeter21 in reply to azaelea]

Good luck Fran it’s all a matter of experimenting with what dose works with each individual I want o stick with Peg 👍

[Exeter21 in reply to Exeter21]

thanks Fran it’s a minefield this journey for all of us when it happens but thankfully we all getting attention 👍

[hunter5582]

Not too surprising that you need to restart on cytoreduction. There really is not a right or wrong answer regarding whether it should be HU or PEG. It is about meeting your treatment goals, risk tolerance, and treatment preference. If you prefer the "better the devil I know" then that is the right choice for you. At least for now. Provided you tolerate the HU at this point, then it is a good choice. If you run into problems with HU, you can always switch to PEG and try that instead. Some of us do much better on PEG than HU in terms of efficacy and tolerance. Time will tell what works for you.

Wishing you all the best on the next stage of the journey.

[azaelea in reply to hunter5582]

Thanks, Hunter for your thoughts and good wishes for my future journey. Kind regards and good wishes to you also. Fran

[Fairbank]

Hi Fran. Like you I have ET Jak2+. I took HU for 18 months then had a rest for 5 months (I felt normal again). My platelets rose to 639 and my consultant put me on Peginterferon without question. My platelets dropped 200 in 3 months on a very low dose. I don’t have any of the symptoms you mention just achey legs now and again and a little fatigue in the afternoon. Paracetamol works on the aches very well. I am 72 and feeling good. Wishing you well with your choice.

[azaelea in reply to Fairbank]

Thanks for your feedback. I’ll keep PEG in mind for sure and will make sure I start on low dose if I do change to it.

[Bridie123]

Hi Fran, I was interested to read your post because I too took a break from the hydroxy just for four weeks but my platelets doubled in that time, to 828,so I was immediately put back on 1500mg a day. Like you, I am sticking with the devil I know,even though it is making me ill,, because I am Terrified of the side effects of the others.😢

[ciye]

I didn't like hu and after a year asked to go on peg stayed in that for over a year for me the side effects were to hard to cope with. Been back on hu for 6 months and out of the 2 hu is the better devil until hopefully new meds are available. We all have different reactions to the meds.

[Mirror368 in reply to ciye]

What dosage and frequency were you on?

Eileen

[ciye]

Started peg on 45 mcg and increased to 135mcg over 8 months Carol

[Exeter21 in reply to ciye]

135 seems terribly high for Peg . Did you consult MPN & experiment on doses & bigger gaps between . 👍

[dogsandhorses]

Consider taking it every other day, or even every 2 days. Discuss with your Doctor, but that has helped me to tolerate it.