I have ET + CALR and taking 3 pills of Hydrea a day and my platelets are in the millions again. I got off of Pegasys in March because I was starting to feel "down" and massive fatigue, but we are giving it another try on a low dose. We think I'm growing tolerant to Hydrea. My Dr said that they are seeing this a lot with ET patients. But we want to try Pegasys again before Anagrelide.
When starting pegasys, did anyone notice side effects right away?
Is anyone on Anagrelide and has the same mutation as me?
Feeling a little defeated, like I'm back at square one. Dealing with a lot of fatigue and dizziness. But I know I need to get my numbers down. I might be a possible candid for the trials in November at Stanford but more info to come on that. Keep you all posted.
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Zeppelin11
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It sounds like you are refractory to hydrea if 3 tabs/day is ineffective. Unfortunately, this does happen. PEG worked much better for me with far fewer adverse effects than HU.
I have only had minor adverse effects with PEG and them later Besremi. There has been mild lymphopenia, borderline neutropenia, and mild itching/rashes. It took a few months for these adverse effects to occur. I have not experienced any psychiatric effects nor fatigue on the IFNs. In fact, I fell better now than before I started on the IFNs.
We are all different in how we respond to the medication options. Trying a rechallenge on PEG is a logical step prior to trying anagrelide. While some do well on anagrelide, it does tend to have more adverse effects for some. Jakafi might also be an off-label option is all else fails to help.
You may also be a candidate for the clinical trial of bomedemstat if you are interested. Your hematologist should be able to advise on that. There is also a clinical trial for Besremi for ET.
I just started pegasys 45mcg weekly - same age and mutation, no side effects to report other than injection site redness quarter size for a couple days.
Hydrea seemed to stall out PLT in the 800s for me as well, so my hematologist decided we would swing for the fence with pegasys. I was fine with it partially because I couldn’t see hydrea as any kind of long term solution. Just felt like putting a lid on a problem.
I think low and slow at first is the way to go, we can always ramp up. fingers crossed it works magic for both of us. Prayers for you. 🙏🏽
My hematologist did want to try Ruxolitinib if pegasys didn’t fly - maybe worth considering?
Hi I was ET CALR from age 33, I am now MF CALR from age 45. Whilst ET I took Anagrelide for the 12 years. A few side effects in first few weeks, mainly heart palpitations, but once that settled down I was absolutely fine for the whole period.
Since MF dx, I have been on pegasys, side effects when I first started, and when dose increased, but again it all settled after a few injections. I think the body just has a “getting used to” period.
Hi Zepp! I’m CALR+ ET and on Pegasys 90mcg per fortnight since diagnosis 15 months ago. Preliminary itching side effects and some fatigue have abated and all’s well now.
I stopped Hu due to bad side effects. Went onto 45 weekly Peg but had terrible migraines which I have never had . But I was intent to stick with Peg so contacted Professor Harrison at Guys.
She advised 6 weeks off everything I then started Peg again in 30 monthly for 4 months now 45 monthly & my platelets came down to 370 & all bloods good.
I feel fit full of energy & Interferon to me has been a game changer. All in the doseage & gaps for treatment until body adjusts.
I am very sensitive to any drug as taken nothing in my life other than paracetamol rarely . I have ET . Good luck stick with it 👍 Julia .
I am Cal R - ET and at least partially resistant to HU. After years stable on a low dose HU I gradually went to up to 1.5g /day HU and even this was not holding the platelets in check. I am currently attempting my second transition to Peg. The first attempt went wrong due to mismanagement rather than the Peg itself.
I'm now about 1 year into the 2nd attempt and have gone from 2g/HU day with 45 mcg of Peg to what works out at about 0.57 g/day HU and 81 mcg Peg. It has been frustratingly slow but if this can be continued then I will get off HU eventually, though I don't know when.
I do not have any firm conclusions about side effects other than that from the start the combination of meds caused low RBC, low hemoglobin, low WBC. I have been short of breath but I had some of that before starting the Peg. Currently other med issues (lungs lymph, skin) are being investigated but have yet to be attributed to the Peg. To my mind it is immune response related. I'll post when I know more.
You are seeing the people at Stanford so you should be in very good hands. Go slow and try not to worry. I know that is not easy.
IMPORTANT:
1) Get any vaccinations before you start the Peg. I have had two terrible reactions to vaccinations since being on Peg, a covid booster and the first shingles jab. More than 6 months on, I am still dealing with the fallout from mine (A weird immune reaction that is affecting my skin and lungs) which may end my transition to Peg, something I do not want. I will post more on this when my Dr's let me know what they think is going. Also, forum member EPguy has posted on his vaccine woes, which stopped his use of Besremi.
2) Pay attention to any changes, even very small ones, that you notice to yourself as you start and progress with Peg. Keep a log and let your Drs know about them. The paperwork that comes with the Peg indicates a lot of side effects that can build slowly and have symptoms that can be confused with other conditions. These can be serious.
Lastly, I'm in SF and would like to get a consult with the Drs at Stanford but current insurance won't let that happen. I am curious to know what medical insurance you use to see the people at Stanford.
Wow that’s a long time on hydroxycarbemide and it’s good to hear you’re doing well . I’m just 18 months in to this medication. Can I ask you if your hair thinned in this time as my hair is already a lot thinner after only 18 months. Kind regards Irene
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