Starting Pegasys Friday

[Zeppelin11]

Currently on Hydroxurea (1500mg per day) and transitioning to interferon on Friday. The plan is to still take one pill of Hydrea a day and start with an interferon dose of 45mcg. I'm staying positive because I'm 38 years old and I think this will benefit me in the long run when it comes to side effects. However the medication is daunting and I hope and pray I have a good reaction and can continue taking it going forward. I plan to drink a lot of water leading up to my injection as well as Tylenol about an hour before. Any more tips I should be aware of? My family is also planning to leave for a snow trip two days later and I'm wondering if I should cancel as I don't know how I will be feeling after my first injection. I guess I need a little hand holding right now Thank you everyone for your support. You are the reason why I'm switching to a new medication. I felt so lost before but I'm feeling more proactive now than ever.

[hunter5582]

The switch from hydroxyurea to Pegasys is certainly is worth trying, particularly at your age. While we are all different in how we respond to these meds, I found PEG much easier to tolerate than HU. PEG was also more effective for me. I never had a short-term reaction to PEG. No reaction at all to the first dose at 45mcg.

I later switched to Besremi and now at 150mcg. I continue to have no short term reaction to the interferons. I have experienced some rashes/itching, mild leukopenia and elevation in liver enzymes. I would note that I feel much better on the interferons than I did when on HU or when I was so severely iron deficient from the phlebotomies.

The first time you inject the PEG you should be observed for about 20 minutes in the event of the very rare immediate adverse reaction. After that, you can just inject the weekly dose and carry on. The only thing I do to manage Besremi side effects is take a daily Claritin. I started that while still on PEG.

I would not cancel the planned family vacation. While it is possible you may get the flu-like side effect, many people do not experience this at all. There is just no way to know how you are going to react other than to try and see how it goes.

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

[Zeppelin11 in reply to hunter5582]

Thank you so much, this is very helpful!

[Exeter21]

wow that seems a high dose of HU you are on daily . I went from Hydroxy which my body rejected to Interferon Peg . I believe this to be a very good drug & bought my platelets within range. I have ET Jak 2. However make sure they get your doseage correct. I was put on 90 to start & queried it as thought too high. I started on 45 weekly however that made me light headed and feeling anaemia. I took advice from our MPN expert & came off it for 6 weeks & will start again on 45 every 3 weeks. Our bodies are all different & cope differently. I am hoping the new programme works . Make sure you report everything back to your Haemotology if problems as doseage makes a big difference to quality of life 👍 .

[Wyebird in reply to Exeter21]

hi sorry to hear you had to temporarily come off Peg. Just imagine if you hadn’t halved the dose😵. Maybe you could stay on a combination of Hydroxicarbomide and a low dose of Peg.

Hope all goes well. Keep us updated. Give yourself months to get used to it.

[Exeter21 in reply to Wyebird]

yes horrendous permanent migraines & never get headaches usually. Professor Harrison trying bigger gaps from mid Jan . I feel so fit off everything but aspirin & platelets dropped to 300 however know it will rise again. Made my hair drop out in shed loads which stopped once off Peg. Hoping to get a solution as interferon my only option Hydroxy made me really Ill & 3 months to get over it 🙈👍Julia

[Wyebird in reply to Exeter21]

oh dear, your are in excellent hands. I’m sure she will find a solution. I’m under her and her team. Love them all. Good luck

[Exeter21 in reply to Wyebird]

Thanksso much 👍

[KyleeR]

Kia Ora Zeppelin,

I don’t have any experience with these medications yet but just wanted to send you a message of support.

Things can be so very tough with this disease, and others don’t often understand. If you ever need to chat feel free to reach out.

Sending lots of love and light with this next step

Arohamai

Kylee

[Zeppelin11 in reply to KyleeR]

Thank you so much

[Hopetohelp]

Don’t be frightened, go with it and stay positive and stick with lots of water. Big hugs and let us know how you get on

[Grum1]

I was also on 1500mg per day of HU until the swap to Pegasys at the end of October. Started at 45mcg for 4 weeks and then dose increased to 90mcg. Initially, after the first few injections, I just felt like I was coming down with the flu ((headaches and aches and pains). I just kept up regular Paracetamol for 24 hours or as required. My hair loss / thinning has increased ( after finally stabilising after about 12-18 months on the HU). I did notice an increase in fatigue when the dose increased but otherwise I think I feel better general on the Pegasys. Good luck.

[Wyebird in reply to Grum1]

I too noticed more hair loss on Peg

[Wyebird]

hi,

I started on 17 Hydroxicarbomide and 90mcg of Peg a week.

I told myself I was going to be unwell so dosed myself up with paracetamol once I took Peg and went to bed. I took it about tea time.

The next day I was sluggish as if I had flu. It took a few days to get back to normal . After each jab the symptoms got less and less.

You are having half the dose I had ( pharmacy error I should have been on the same dose as you.)

If your trip away involves self catering then prepare food in advance so it can be heated up or have take aways just incase you are off peak.

Is there any reason why you can take it a day early?

A few tips - I found the side affects kicked in a few hours after the jab.

If nervous about injecting yourself - I was get someone to do it for/with you. My neighbour helped me

Put an ice pack on your tummy I still do that 18 months on . It numbs the site.

I can assure you, the needle is small and with the ice pack you will feel NOTHING!

Im a big scaredy cat of things like that and it’s a breeze!

I love my Peg!

I really hope it works for you.

Go and enjoy the snow, not sure if you are planning skiing or not but you should be ok.

If you are slightly unwell just take a book and chill.

Keep us informed.

[ciye]

I wouldn't cancel the holiday, have you thought about delaying interferon until you return. Once back in your normal routine you will spot adverse effects more easily.I was told not to take my injection when I knew I would be busy the following couple of days.

[Notmyusername]

I'm starting peg in a couple of weeks too, first time treatment following recent diagnosis. Obviously there are a lot of emotions to work through, but staying quite positive about it all at the mo. Perhaps we could compare notes about early experiences as we go through them.

[Mazcd Partner MPNVoice]

hi Zeppelin11, I hope the transition goes ok for you and that you don't have any issues, enjoy your snow trip if you do decide to go. Best wishes, Maz

[happyretiree]

I started Peg on Monday night; I am writing this on Thursday morning. I am 67, this is my first time being treated with anything but aspirin. I have had ET for 30 years. I was so anxious and stressed out over the decision to take Peg rather than HU. I watched YouTube videos on how to inject. The hardest part was filling the syringe. I took a Tylenol beforehand and waited for side effects. So far, nothing. I keep checking myself but I am going through my normal days, including 60 minutes of cardio the next morning. I am so relieved that the decision to take Peg and the first injection of 45 mcg are behind me. Hoping for the same for you!

[NCB1983]

hi Zeppelin11, I understand your reticence as switching meds is scary. Since my diagnosis I have never tried anything other than peg, so I can’t comment on switching but I can comment on peg. I started on 45mcg (like you) and then they gradually upped the dose to 180mcg. I am now on 135mcg. I don’t really get side effects although I do feel a little anxious the day after taking

Here are my dos and don’t me (just based on my own experience):

- Do drink lots of water (otherwise you’ll have hangover like symptoms the next day)

- Don’t drink alcohol on the day you do your injection (for the same reason as above)

- Do take the peg out of the fridge 20mins before taking (makes it less stingy)

- Do have a bath beforehand if you’re not used to injecting, this makes the skin more supple and means it hurts less (if at all)

Good luck! It’s helped my platelets loads, they’re now stable within normal ranges

[NCB1983 in reply to NCB1983]

oh and do go on your holiday! And do enjoy it!!

[Solyesh]

Definitely go on the snow trip! I too went from 1,500 mg daily hydroxy to Peg (but at 1180 mcg) - after a lot of trial and error now on 90mcg every 17/18 days. We are all different...and I had no serious side effects even on 180mcg -I was a little more fatigued and felt a little flu-ish after my initial injection but nothing more...drinking water before the shot is good plan but I would say to just try and increase hydration in general..I have noticed the more hydrated I am the lower any possible effects..and keep exercising - the movement seems to help as well. Good luck!

[Threelions]

Hi,

I’m 54 & been on peg for c3years.

Take around 6-6.30pm

Drink loads of water/squash

If you do this I’m pretty sure symptoms (if any) will be completely gone in 36 hrs max.

I’m sure you’ll be fine👍

Let us know how you get on.

[MAP44]

Good luck to you. I have been on pegasys for 9 months. I was told to inject at night an hour or so before bed. I took a Tylenol arthritis it is a longer lasting and stronger Tylenol at the time of injection and again when I woke up if needed. Drinking water is important but do it earlier in your day so you are not peeing all night. I have experienced very little side effects ( insomnia on 3 rd night after injection) and when I take the shot I no longer use the Tylenol at night or in the morning.

Once lying in bed after the injection listen to a positive meditation do some breathing or relax with an interesting podcast that puts you to sleep. Treat yourself special each night but pamper yourself that night a bit more. Warm bath before is a lovely idea. ❤️

[william-Indo]

Hi Zeppelin,

When you do the first jab, take it at the hospital or clinic and wait for a while to see how your body response to the med.Warm the tube with your palm for few seconds and gentle push out the air before shot. Better at night before sleep

Wishing you all fellow in MPN a very happy new year