Looking for feedback- staring Pegasy?

[BloodZero]

Hello,

Im a 45yo guy that tries to be active despite fatigue and has a job in a warehouse. Ive been diagnosed with ET about 9 years ago. My platelets average 1400 (in AU measurement).

My haematologist and myself have not seen the need to start any treatment, until now. I have started getting problems with my organs. Stomach upsets, cramps around my enlarged spleen and i have high proteinuria so its seems my kidneys are not doing to well. These things will be investigated with ultrasounds and other specialist.

However, regardless of what the specialist say, my Haemo now thinks I should start treatment on Pegasy. (few years back she said that if we start treatment it would be Hydroxy).

I do not what to start on treatment. I am very worried that it will make my quality of life worse with fatigue, sickness, mood swings(i am prone to depression). There is no guarantee that my ET is causing my organ trouble, but probably is.

So these are my questions?

Would I be stupid to refuse treatment? Are the side effects really not that bad?

What reasons would she have from changing her mind from Hydroxy to Pegasy?

Can I still work? I have a physical job in a warehouse?

Has anyone with ET had stomach problems, kidney problems pre-treatment?

Thank you for your input.

Steve

[Susana7]

Hi Steve, I held out treatment for a year with fear of side effects because of my career and in that year the disease just progressed with both platelets and HCT rising further. I then started Pegasys and it has worked really well for me: all counts are in normal range after one year and, 3 years down the line, I only inject a tiny dose every 3 weeks. I have no side effects currently and work full time in a demanding job. The trick is to start at a low dose (45mcg or 90 mcg max) and then slowly increase if needed. I started at 90mcg/weekly, and the main side effects were some minor (but annoying) hair loss and frizziness, and sore mouth - nothing that affected ability to work. I only had the much advertised flu-like symptoms once after the first ever injection, and it was mild. I inject on a Friday night, so if I were to have side effects they would fall on the weekend. After a year, I reduced the dose to 45mcg weekly, and had no side effects at that dose. I since reduced to 45mcg every 2 weeks and currently every 3 weeks. Clearly, you would have to keep an eye on things and discuss any side effects with your haemo. But if I were you I would give Pegasys a try! Best of luck! Susana x

[BloodZero in reply to Susana7]

Thanks Susana this is helpful. I think, but 100% sure that I was to inject every day. But I like the sound of starting small and building up. ill have to discuss this with Haemo.

Thanks again.

[Susana7 in reply to BloodZero]

With Pegasys (pegylated interferon) you only inject once a week (or less once the disease is controlled). The standard interferon is the one you would have to inject several times a week. Much better to go for Pegasys, it also has less side effects. A novel type of pegylated interferon (Ropeginterferon) should be approved very soon and this one has been designed to be injected only every 2 weeks! The fewer injections the better 😊

[EleanorPV in reply to Susana7]

My experience is very similar to Susana. Although my timescale is 2 years. All my FBC’s are within normal limit. I do have some PV symptoms, which I had before starting Pegasys. I did find a huge improvement with fatigue since starting Pegasys.

[BloodZero in reply to EleanorPV]

Thats good to hear Eleanor. As my two main side effect fears are depression and worse fatigue.

[Jasbak66]

Hey I’m in the sort of same boat, I have no symptoms, I’m fit and healthy I cycle a lot if I didn’t know better I’d say that there’s nothing wrong with me. Unfortunately my platelets are high currently around 1200 I’m getting mixed messages from different consultations, some keen to get me on meds others saying let’s keep doing what we’re doing and review when platlets reach 1500. Like yourself I’m worried about starting meds and QoL as I’m very happy at the mo. Interested in the thoughts of others on this.

[BloodZero in reply to Jasbak66]

Thanks for your reply. Do you get any abdominal discomfort, cramping around spleen or pain after eating?

[Jasbak66 in reply to BloodZero]

Hi BZ no I have no issues apart from sometimes feeling a bit dizzy. Have you had your spleen measured recently?

[BloodZero in reply to Jasbak66]

Im getting scans done today. Last time it was checked it was growing.

[Paul123456]

Steve

She may have changed opinion re HU to Pegasys based on recent trial results indicating that Pegasys achieved a superior molecular response, reducing Allele Burden and possibly, for some, improving marrow fibrosity. Still early days and no consensus amongst Hems re long term significance but my impression is that Interferons are gaining support.

The downside with Pegasys is that, for a subset, it can increase depression and cause auto immune issues.

I’m on Pegasys 90 mcg weekly and no side effects/problems. Assuming your Hem is agreeable, you could start at a very low dose say 45 mcg every two weeks, then perhaps increasing to weekly dose. The max dose is 180 mcg weekly.

Hopefully low dose Pegasys will reduce your platlets and cause minimal, if any, side effects and you will feel better. You have told your Hem that you are prone to depression? Something you will have to be careful about with Pegasys.

Best Paul

[BloodZero]

Hi Paul, thanks for your feedback. I think small doses is the way to go. I have not told her about my depression. If i do she may say start on Hydroxy. From what ive read on this forum, Hydroxy seems worse in the long run.

[wotan10]

I have been on hydroxy for two year with no side effects. I am fitter than I have been for a long time.

Try not to close your mind to what's available your haemitologist is the person to guide you in making the right choices for you.

On here we are not the health professionals with knowledge.

It's all about valence.

[BloodZero in reply to wotan10]

Thanks Wotan for your feedback. People on the forums are the ones living with ET and are the ones taking the medication. Their experiences are much valued.

[Jocko]

Hi Steve,

I am a 55 year old man who has been on Peg since Sept 2017. The side effects are different for different people. For me they have been fine. I don't do a manual job everyday but I do cycle to and from work. The worst I have had is some muscle aches which is quite easily dealt with by a couple of paracetamol. I wanted Peg rather than HU so that was my preference and so far so good. My platlet count is down from 1250 to 160. Don't worry about it , you do what you feel is best but don't stress about it. It may be a good option and you are over thinking it. What's the worse that can happen - you start on Peg it doesn't work for you and you have to change. Good luck with your decision I hope everything goes well.

Jocko

[BloodZero in reply to Jocko]

Thanks Jocko, im often told that i over-think things. Your right, its worth a try arleast.

[ihavegotet]

I did the same thing as you, wait and watch till I hit 1.4 million. I went on Pegasys almost a year ago and my numbers are all normal now and have been for a while now. Side effects differ amongst people but 45 is a low dose and you will probably do fine with it. It has done miracles for me. My allele burden is cut by 50%. It does get to my head sometimes, where I start to feel sorry for myself, but exercise definitely snaps me out of it. I wish I had started Peg earlier since my last bmb showed grade 1 fibrosis. Pegasys is also known to improve fibrosis in the marrow so my next bmb will tell!

good luck with this difficult decision.

[BloodZero in reply to ihavegotet]

Thanks for your feedback. Im glad to hear your doing well on it. That give me courage to try. Did the treatment make you feel more tired?

[ihavegotet]

Maybe at first. I am not sure if the disease itself is making me tired or the Pegasys. Overall i feel better on Peg. Less neuropathy and less headaches.

[BloodZero in reply to ihavegotet]

Nice to hear. Thank you.

[Tomaj]

Hello Steve,

I am a 48 year old male, soon to be 49.

I am surprised your haemotologist did not start you n treatment ages ago. I was diagnosed with E.T in November 2018 after two years of suffering from headaches, nausea, dizzy spells and ulcerated feet. I only got treatment and diagnosis after getting gangrene in one of my toes. I have now lost this toe and I am on Hydroxy and aspirin and will be for the rest of my life.

I can only speak for myself, but I feel no side effects whatsoever and I feel better than I have felt in years. I am still off sick and I have a foot clinic appointment on 30 January. I am on antibiotics for osteomylitis and should be able to go back to work in February.

My advice is take the treatment. You need it. Otherwise, you will be doing untold damage to your body. Not to mention the risk of stroke and heart attack from blood clots.

Regards,

Tom

[BloodZero]

Thank you Tomaj for your feedback. I guess be never considered treatment because I was not having any problems other than fatigue. But, I think your right. It seems there is damage happening that I am unaware of. I just need to decide whether I should try Hydroxy or Pegasy. My Haemo is not certain.

[BloodZero]

If i start either Pegasy or Hydroxy, would you say that the average time for platelets to come down would be 1-2 years?

[WileyFrench in reply to BloodZero]

I have ET and have been taking hydroxy for about 7 months. After moving dosage to one pill one day and two the next, platelets got into normal range about a month ago.

[piggie50]

When I started Hydroxy my platelets reduced very quickly. They were back to normal within 3 months.

[BloodZero]

UPDATE : because of my past history of severe depression, my doctor thinks it's best that I don't try Pegasy. So im going back to the first option of hydroxy. One tablet a day at this point so I took my first one today.

Hoping for minimal side effects and hoping that my platelets come down.

Also hoping that my spleen reduces in time. And that the troubles I've been having with my kidneys and other organs will ease up.

[Justmeme1922]

Good afternoon. I started pegasy Friday evening and i was very nervous ans embraced for side effects. To my surprise, I did not experience any. Keeping fingers crossed. I started on a low dose. I had to see a specialist at Emory in Atlanta. My initial hemotoligist immediately wanted to start me on hydrea and for me that wasnt an option. Had a heart attack in September out of no where. I was very active in the gym regularly and ate rather healthy...i thought. February my cardiologist reviewed everything and my platelets had been at 600-900 for over a year. I was anemic, had a blood transfusion and started iron infusions in February. Fast forward, they diagnosed me with ET. My cardiologist said the clot he removed was odd and I had no plaque anywhere else so that is my story. I will have weekly labs and see what happens. I appreciate this forum for having insightful information.