starting a low dose pegasys

[bocaboca]

i have et (+jak) and im starting a low dose pegasys. im asking for thoughts on side effects in terms of when they mostly hit? im wondering what day of the week is best to take a weekly shot for anyone? thoughts? & thanks!

[hunter5582]

I would suggest taking the PEG dose somewhere in the middle of the week. That way if you do have an unusual reaction when you first start your doctor will be available. I did my first dose at my hematology office. The nurse made sure I knew how to do the injection (mini-training) then observed my first self-administration. I stayed for 20 minutes just to be sure there was no unusual reaction.

It took several months before I experienced any side effects. I have experienced itching and occasional rashes. These issues are well managed by a daily dose of cetirizine. I have also experienced mild lymphopenia and borderline neutropenia. This became more evident after I switched to Besremi and went to a higher dose. It is a dose-limiting factor. I have also 3experience an elevation in LFTs at a relatively low dose of Besremi (175mcg q 14 days). This can also be an issue with PEG. A daily dose of Milk thistle Extract returned my LFTs to an acceptable range.

Wishing you success with using Pegasys.

[bocaboca in reply to hunter5582]

wow thanks!

[ainslie]

you might get no sides, some get flu like symptoms, this is usually temporary and some take the shot at night with some paracetamol or similar to try to avoid the fluish symptoms, some get itching and some get mood changes, everyone is different , best not go looking for sides, the mind can be devious. Some sides can come on on the first shot and some can creep up slower like mood changes. Many of the sides can be temporary but others not. Just try it to see, good point made by Hunter to start earlier in week , even Monday.

[bocaboca in reply to ainslie]

thanks!

[Mieshie]

I started peginterferon after miserable side effects from HU and anagrelide. My hematologist prescribed peg with caution to start with, low dose of biweekly 45 mcg. She gave me a prescription for anti nausea Prochlorperazine 10 mg and OTC 385 Tylenol for headache. I took the Tylenol an hour before the injection. I kept the anti nausea close by in case it was needed. She suggested injecting mid week as Hunter noted, in case I needed help. First injection day nothing but red spot and a little itch. It was the day after that nausea hit but took the anti nausea pill and felt good after just a few minutes. The biweekly plan worked this way—day after injection was the only time. Then switched to weekly after 2 months and again had day after effects. The anti nausea and Tylenol were all I needed. Those side effects disappeared shortly after as I became well adjusted to the drug. At 6 months dose was increased and I was fine. What was new is I had an inflamed spot on my shin that was painful. Dermatology checked it out. Penniculitus (sp?) confirmed. Anti inflammatory and pain cream worked. Had two more such spots and since then no more. Sorry if TMI. I am a huge fan of IFN and have benefited greatly from it. Started low dose and slowly built up to higher dose and taking more frequently to get where I am today. I wish you well taking it!

[bocaboca]

so helpful!!! Thanks!

[Nerjalover]

I have taken it for 5 years. Access in reducing platelets. However my liver has been compromised- badly!

[bocaboca in reply to Nerjalover]

thank you!

[Threelions]

Hi

I’ve taken it for years.

Side effects vary from person to person it seems so I wouldn’t try & 2nd guess how it’ll go for you.

Take in evening with paracetamol & be sure to drink plenty over the following few days.

If you do get any side effects they’ll likely be manageable & you’ll get used to them (I have exactly the same effects every dose so it’s easy to manage)

Sure you’ll be fine & I’ve found it extremely effective for the effective management of my ET.

All the best & let us know how you get on.

[bocaboca in reply to Threelions]

thanks!

[Jocko]

Hi

I am 61 and been on Peg for 7 years.

I am still at work and decided to take my injection on a Monday night before I got to bed.

That way if I had any side effects it would only affect work and not my precious weekends.

As said by others the side effects vary from person to person and fortunately mine are not too bad - night sweats and muscle aches. This has been countered by taking 2 paracetamol each night before I go to bed.

I started on 45mg per week, that changed to 90 mg every 2 weeks and then 90mg every 3 weeks. Now there is a countrywide shortage of Peg my dose has been reduced and I am on 90mg every 5 weeks.

My platelet count was 1250 before I started Peg - it went down to 170 when I was on 45mg per week. Even now with the reduced dose it has only risen to 220 which just shows that they are pretty much guessing with the dosage and we may all be able to get away with a lower dosage.

My advice would be not to worry and see how it goes.

Whatever day you decide to inject do it before you go to bed and you can sleep through any side effects.

Good luck

[bocaboca in reply to Jocko]

thanks all the details so helpful!

[RedCardRob]

Been on peg for just over a year. Every 90 every 7 days to begin with, now stretched out to every two weeks.First two ot three times needed paracetamol to clear flu like symptoms. But otherwise all ET symptoms cleared and platelets stabilised to 300-350 generally after 2-3 months.

There's always a however that is a different for everyone. Mine is occasional fatigue (but could be my age!) and the hard to describe tingling/itch after having a shower that lasts anything from 5-15 minutes with varying intenseness.

All the best and make notes so you can discuss with your msn team because they will ask.

[bocaboca in reply to RedCardRob]

thanks!

[Exeter21]

I am on Injections Peg Interferon 45 monthly. Have experimented over my 2 years on it & morning is best for me. It doesn’t give you side effects at that doseage. But you must drink plenty of water. If you do not keep hydrated you will notice . Excercise is good . I travel many places & this is a brilliant treatment. I was on weekly at start but found it too strong & made me light headed. Took advice from MPN & reduced to monthly. Low & slow they instruct to start on . Julia UK👍

[bocaboca in reply to Exeter21]

thanks!

[Hopetohelp]

I took peg mid morning so that I could drink plenty of water all day. Also took it on a Wednesday as that was the day the nurse showed me how to do it. I liked Wednesdays as it means you have time to free up any symptoms to enjoy the weekend although you may well not get any symptoms. Good luck

[bocaboca in reply to Hopetohelp]

thanks!