pegasys

[Nc3500]

good morning everyone just saw Dr Mesa finally have answers he wants to start me on a low dose one Pegasys I heard a lot of good things and bad about this medication any advice would be helpful I’m relieved and worried at the same time

[Emmyroos]

You have a great doctor! That must be a big relief to know you will be looked after by one of the bests in the field.

I have been on Peg for 1.5 years. It was a little tough at first - I had side effects in the beginning (fatigue aches etc) 48 hours after each injection but those subsided after a few months as I adjusted to the medication. I have virtually no side effects post-injection now. I was at 90 mcg weekly and have just recently reduced to 90mcg every 2 weeks. It can take awhile to kick in for blood numbers. It was about 5 months before my 1M+ platelet reading came down into a reasonable range. Best of luck! I hope it works well for you!!

[Nc3500 in reply to Emmyroos]

thank you for your reply were you experiencing symptoms before they started you on shot and if so, how are your symptoms now?

[Emmyroos in reply to Nc3500]

Oh yes, I had lots of symptoms before starting Pegasys - I had quite serious fatigue, ocular migraines, numb hands, trouble sleeping. I had trouble getting out of bed and going to work, taking care of my kids. Now I enjoy going to the gym again first thing in the morning (I am even able to do Crossfit again). I'm not an exhausted slug on the couch by 6pm anymore. I'm an entirely different person today thanks to Pegasys. I feel like it has given me my life back.

Just thinking about your upcoming journey and the potential improvements makes me feel excited for you. I truly hope it works wonders for you. It may take some time but I always recommend to hang in there - its a marathon not a sprint.

[Nc3500 in reply to Emmyroos]

thank you so much that gives me a lot of hope. I have been feeling the same just not myself. If you don’t mind me asking what is your age? I am 45. I was diagnosed a year ago but never got a clear diagnosis. Until today, nobody wanted to treat me, and was acting like my symptoms were made up.

[Emmyroos in reply to Nc3500]

What you are saying mirrors my experience also. I am 43. I was diagnosed ET during pregnancy in my 30's. It took me 5+ years to get a diagnosis. Initially my primary care doc repeatedly kept telling me my symptoms were just motherhood. Ha!! Finally was referred to hematology by my OBGYN due to high platelets during pregnancy. ET Jak2+ was found. Then 2 years later finally got in to an actual MPN specialist to see me - she promptly did a BMB and upgraded to pre-fibrotic MF and started me on pegasys. I'm 1.5 yrs into treatment and things are MUCH improved. From my understanding, Dr Mesa is one of the leading specialists out there. Is he going to do a BMB? Are you a new patient or have you been with him for the last year?

[Nc3500 in reply to Emmyroos]

I I had a bone marrow biopsy done at Duke University in August of last year and he’s going by their bone marrow and just consistent platelets. My platelets were high when Covid first started and Doctor just said it was an error and I never checked it again then saw a doctor last year for fatigue, wanting a B12 shot just for energy and she referred me to a hematologist, and they never diagnosed me just on aspirin and we will start treating you when you turn 60 so I am happy to start treatment hoping it will stop any progression. Good luck with your journey. Thank you so much for talking with me. I will keep you updated and please keep me updated on your progress. Also happy that you are doing so much better.

[Emmyroos in reply to Nc3500]

Best of luck on the next phase! I wish you much success with your treatment plan. Feel free to PM any time also!

[hunter5582]

I have been on both Pegasys and Beremi. Side effects have been minimal and easily tolerated. Much easier to tolerate than hydroxyurea and venesections. The IFNs have also been more effective, keeping me in a complete hematologic response, I have also reduced my JAK2 allele burden from 38% to 9% in 18 months. I have stayed at a low dose the whole time. The IFNs have improved my quality of life and may well result in a molecular remission. My only regret is that I waited as long as I did to start treatment with the IFNs.

Wishing you the same success.

[Nc3500 in reply to hunter5582]

glad to hear it’s working for you thank you so much for all of your advice this whole time I respect and appreciate everything you tell me

[Ovidess in reply to hunter5582]

Hey, Hunter, can you say how your interferon doses progressed? Minimum and maximum?

[hunter5582 in reply to Ovidess]

I started on 45mcg of Pegasys and attained a complete hematologic response in about 8 weeks. After about 7 months, I opted to switch to Besremi when it was FDA approved. If I had stayed on PEG, I would have needed to increase the dose as my HCT was creeping up as my iron levels improved. I started Besremi at 100mcg. That kept stable for a while. Then I increased to 100mcg for a couple of doses, then to 125mcg and finally to 150mcg. I stayed stable on 150mcg for some time, but the HCT started to creep up as my iron levels further restored. I would have increased dose again, but my LFTs were 3x/ULN. So I opted for the first venesection in 2.5 years. I have stayed stable on 150mcg since that time. My LFTs have returned to normal. If HCT does creep up again, I will plan to increase my Besremi dose. Likely to 175mcg.

I had an interesting conversation with some of the folks from Pharma Essentia. They are aware that people are increasing doses in smaller increments. Real life experience will likely influence prescribing recommendations at some point. time will tell.

[Wyebird]

I place an ice pack on my tummy 5 mins before injecting. Then take some paracetamol and go to bed. In the early days you will feel poorly after each jab but the symptoms also reduce after each jab too until they go altogether. Good luck

[Exeter21]

I am in U K. was on Hydroxy but awful . I started Peg last Autumn on 45 weekly suffered migraines . Took advice from Professor Harrison at Guys London .

She put me on low dose monthly . Just 35 . Headaches went & feel good . So start on low doseage spaced out. I now inject morning not night as I can drink plenty daytimes of water that helps. The night one was prone to headaches due to no fluids whilst you are asleep..

On the weekly doses it bought platelets down quickly. Now slower but I feel fine with platelets on 490 . Injection is easy I just put an ice pack on stomach squeeze skin & feel nothing . Also travelled long haul & used it with no problem . Julia 👍

[Franko21 in reply to Exeter21]

thank you for your reassuring post . I am going to haematologist today to discuss starting Interferon I have ET and JAK.2 and platelets 622 also on Aspirin age 64 I’m very scared of starting this drug and wish I could just stay on Aspirin but your journey makes me feel happier. I do know everyone is different of course .

[Exeter21 in reply to Franko21]

yes I did not want to take anything either & was put off further from taking Hydroxy initially with bad effects. However the Peg is excellent if started low & possibly monthly for body to adjust to it . I now have no reaction to it except occasionally May feel a bit shivery for a couple of hours but its results are good for keeping levels down slowly . If we take nothing then the risk of a stroke etc. Hence I was happy to try Peg. I am fit & no symptoms on this . Good luck you will be fine. I spent a week looking at the needle to pluck up courage & when I did it felt nothing . Ha I think nothing of it now . 👍

[Franko21 in reply to Exeter21]

Thank you again for sharing your experience , my app. Is 12.00 your reply is just what I need to hear . Good luck with everything.

[ainslie in reply to Exeter21]

are you still on 35 monthly, and has that dose changed any of your counts and symptoms?

[Exeter21 in reply to ainslie]

Yes bought them from 590 to 300 when on weekly in 6 weeks . Then off Peg for 12 weeks. Just aspirin. Only rose to 490 & on monthly 35 after two months down to 430 & hopefully now sorted lower dose will continue. I have no symptoms & feel very well on the low doses. Julia 👍

[ainslie in reply to Exeter21]

fantastic result, Clair Harrison gave good guidance there, ie not stopping entirely but cutting back a lot

[Exeter21 in reply to ainslie]

I so happy I spoke to her as so knowledgeable & not obsessed with fast platelet reduction but knows this drug works if done slowly. Can’t praise her enough lovely lady 👌

[Exeter21 in reply to ainslie]

also no fatigue as concentrated on eating well few carbs & no alcohol. I loved red wine but it reacts badly with peg for me even one glass. I weigh 61 kgs so not big body mass 👍

[shiftzz]

I was on hydroxycarbamide for about 4 years, plus 66 venesections. It was controlled. Thenswapped to a combo lower hydroxycarbamide and pega, I saw little progress for about 3 years, I was on 135 weekly, eventually dropped hydroxycarbamide, no venesections.

Now still on 135, tried 90 but numbers went up.

My last allele burden result was 2% taken another test two months ago waiting for the results ..

Pega can take time , i dont have any side effects, but still struggle with fatigue..

[eladhil]

don’t worry. I am taking h.u & peg and no side effect at all. It is individually but think positive

[Threelions]

Hi,

Been on peg over 3 years now. Keeps platelets well in check.

I get some manageable side effects (light flu like symptoms for a day or so)

As has been mentioned,

Worth taking before bed.

Drink lots of water/squash

Have a paracetamol if you feel a bit off.

[Hopetohelp]

Have been on Pegasys for 2 years. Started on low dose of 45mcg and after a month increased to 65mcg of which I am fine. Body didn’t like 90mcg. Can be slow to act on platelets so you need to be patient. It is quite normal for a lot of us to be slow although some react quickly. Never really had side effects worth mentioning. Have more energy now than before. Drink lots of water after injection. I take mine mid morning as that is when nurse showed me how to do it so I continued. Can drink plenty that way. Don’t worry about a red splodge mark on injection site. Quite normal and painless. If you get it, it can last for a week so do different sides of tummy alternatively. Good luck and I hope it works for you

[ainslie]

Dr Mesa is one of the best, so if he suggests something it’s definitely worth trying

[Nc3500 in reply to ainslie]

yes I know I was in bed crying from pain in January knowing and wondering were I’m going to find another doctor I was not satisfied with the one that I had it was not treating me and acted like my symptoms did not exist. I secretly wanted to go to Texas to see Dr. Mesa but I would not tell anyone because I did not want to be a burden than that same day that I was in bed crying his face came across my phone screen that he was taking over at a hospital only a few hundred miles away and I start screaming and telling my husband he’s coming .. so I’m very blessed in having him as my new doctor

[MAP44]

I am excited for you. 54 yr old F PV Jak2+. My platelets were just under a million. Started peg at 90 and 4 months later moved to 135 and a month later to 180. I only stayed that high for 4 weeks but that dose really started to bring down my high count. One year later everything is great and sitting with 90 every week.

Had the itch before, got crazy with the peg but it all settle down. I also suffer insomnia 3 days after the needle so I adjusted my shot day so the sleepless night happened on the weekend so I could nap if needed during the day. When red and platelets started to come down brain fog lifted. Insomnia is gone now, no real issues. Very thankful to get my life back.

Remember to drink lots of water - I top load and drink the most in the morning so I don’t have to wake up all night to pee.

I took the shot at night. Take a Tylenol when you give yourself the shot to start and if you feel woosie take one again in the morning. You get use to the medicine quickly and you might not suffer any issues.

Happy trails 🤗

[Solyesh]

You are very fortunate to be under Dr. Mesa's care! I am ET Jak2+ and have been on Peg for about a year. I had been on HU for about 6 months but the side effects were not tolerable and I also wanted to move to Peg with the hope that it might eventually help stop progression. Started on 180mcg bi-weekly. All bloods came into normal range almost immediately (first time platelets and WBCs had been in normal range in over 7 years). I did not have any visible side effects but my liver did not like the high dose so we stopped for a month and then re-started at half that dose. For the next 6 months we toyed with the interval (moving from every 14 to 18 days and then back to 16) to try and maximize Peg's benefits while protecting my liver.

My last blood counts last week had all bloods in normal range except platelets which sat at 509 (which for me is wonderful). The plan now is to continue on 90mcg every 16 days. We plan on doing another allele burden test in a year. My MPN specialist reminds me that we have to be patient as it can take Peg some time to work.

No real side effects. I am very tired the day or two after the injection..but that is about it. Hydration matters - the more water I drink and the more exercise I do the better I feel.

Hope it goes well for you. Good luck!

[Jynx93]

I have ET jak2+. I was like you when I first went on Peg. Really worried and not knowing what to expect. I found this forum and was very glad I did. It’s nice to get advice from others that have experience of it all. The many people on here really put my mind at rest for which I was really thankful for. Two years later I am doing really well with all bloods normal, “beautiful” as the doc put it. Still on the low 45mcg dose that I started on. It worked really quickly for me and the only side effect I have had is being tired all the time. That’s my personal experience and obviously everyone’s is different. I wish you luck and success

[AndyT]

I’ve been on Pegasys for ET for nearly 8 years now and it’s been great - no significant side effects, very good control of my platelets and my other blood counts stay within normal range too. Main points I’d make are:

- Start on a low dose like 45mcg to get used to it. I tried that for the first 2 weeks then increased to 90mcg as I was tolerating it well

- Be patient. I was lucky to get an immediate response but some people find it takes a few months to start working

- Don’t worry too much about side effects. Like all medications there’s a long and scary list but the dosage we use is very low and shouldn’t cause many issues

- Once your counts are under control ask about extending intervals between injections and/or reducing dosage. I’m just on 45mcg every 4 weeks now, which is very easy for me and keeps things under control