Hi everyone, I’m about to try Pegasys in a few weeks time on a weekly dose of 45. If I get any unpleasant side effects I wondered if occasionally it’s ok to put back the usual day of injecting by 24 hours if I had something special on the day of the injection. I forgot to ask my haematologist at my appointment. Do any of you do this?
Thank you Irene
Yes that will be fine. I used to take mine before bed with some paracetamol that way I slept through most of the side effects. It’s definitely worth taking it made my life so much better. Wishing you good health Claire
This is a question best reviewed with your MPN care team for more specific advice.
Here is the advice for a missed dose, which may help answer your questions.
What if I miss a dose? If you miss a dose and you remember within 2 days of when you missed your dose, take it as soon as you can. If it is late in the day, wait until the next day to take your dose. If more than 2 days have passed since you missed your dose ask your doctor what to do. Do not take double or extra doses. my.clevelandclinic.org/heal...
The dosing window for many medications varies based on the half-life of the medication. Pegasys has a half-life of 80 hours. At 6 days, there is still about 25% of the Pegasys in your system. It is intended that there should always be a certain level of the medication present that needs to fall within a certain range to be effective and tolerable. There is a degree of flexibility in the dosing window for any medication.
I hope that helps answer your question. It may be OK to flex by one day but still suggest you review this with your MPN care team before altering the dosing schedule.
Thank you That’s very helpful information . Kind regards Irene
I have a weekly Wednesday 2 PM calendar entry on my iPhone with 1 hour advance alert to take the injection. That’s my plan B reminder so I can’t forget it. I never have forgotten before the reminder alert goes off as the injection remains a major event for me. Once in the last year I had to ask hematologist to change the timing by two days. She said that was OK, asked if changing the schedule thereafter by 2 days was alright. I said I’d rather not change from Wednesday to Friday thereafter. She said then the next week’s injection would be like taking the drug 2 days early and there could be side effects for having a shorter time period before following week’s injection—an increased drug amount in system. She said be aware of possible side effects, that being on low dose should be OK but to be aware. Thankfully I had no side effects and not bothered at all. Changing the injection day can be a serious impact so whether forgetting it or having to change it should be discussed with your doctor. Stay safe!
Thank you I hadn’t thought about there being extra drug in the body the following week. Did you have many side effects at first? Kind regards Irene
I started on 45 mcg every 2 weeks for 6 months. now weekly at 68 mcg for almost 6 months and platelets are dropping. I was prepared for headaches and nausea at the start. Hematologist gave me a script for the nausea, suggested regular strength I think was 385 Tylenol. Anything more than these two possible side effects I was to call her. At the start I took Tylenol an hour before injection. Rarely got nausea or headache but if I did it was day after. Subcutaneous means a slower release of the drug under skin vs directly into muscle or vein so I think that’s why side effects if any were on day 2 . At first the injection site was a bit sore and red. Doctor suggested putting on aquaphor for dry irritated skin. It helped and no more soreness nor redness. I am thankful peginterferon works for me—low, slow and steady. Just like HU and anagrelide, we can react quite differently. I hope you have a good experience.
ha ha I’ve done that or altered the time . I would just make that your usual jab day. Go 7 days for your next jab etc. now though I don’t have side effects so I don’t do it. I’d drop your nurse a line just in case. I’m not medically trained.
Hi, I been taking Pegasus for 9 year now on different dosages over the time. Now I am on 45mc every four weeks. I asked my MPN doc if I could take one day after or before and doc allowed it. So I think you have to check with your MPN doc/nurse specialist so you the right for yourself. Wishing you well.
we are all different Irene so important if you feel unwell on treatment to just ring your local Haemotology to discuss. They should give you a contact number. I changed from Hydroxy to Interferon almost 2 yrs ago. I was on 45 weekly but for me it was too strong & I was wiped out. BUT I contacted my Haemotology & also an MPN Dr for advice.
My MPN took me off it for a short time then 45 monthly I have remained on always .it has been brilliant & body copes well & platelets controlled.
Do not expect a quick fix as taken 18 months experimenting to get here . It is a slow drug .
My platelets hover between 350 to 450 or above if I have inflammation from an injury etc.
Regular bloods around 8 weeks at beginning to get dose correct. I take the injection morning because it is better for me than the nighttime was.
I get no side effects as you are actually using your body daytime but night time injection I would wake fuzzy. Drink more water than you have ever done. Eat sensible & it’s a life changing drug for me. I travel long haul, take it with me in tiny cool pack everywhere I need. You will be fine & lucky to get chance to try it as many Drs are resistant due to its cost to NHS. 👌 Julia .
Thank you for your reassuring reply Julia. Could I please ask another question re travel as we have a holiday in May in Spain. It’s just for a week so I’ll use a cool pack but do I then keep it in the mini bar fridge in the hotel room? Also do I take the sharps bin with me? I’ve not received that yet so I’ve no idea how big it is. I keep thinking of questions as I’m finding it all a bit scary and want to gather as much information as possible . Thank you Irene
Irene I had to get a letter from Dr that I had to pay for to prove I was prescribed the drug Interferon. As scanners in airports detect drugs you need this letter as I have had to use it every time I carry my syringes as classed as dangerous 🙈🙈 . I taped an old Interferon box label to the front of my small cool box pack . With a gel pack inside . I have actually done 36 hrs without fridges & always get some ice cubes off air hostess or cafes etc when travelling to keep it cool . Once in accomodation if no fridge in room hotel staff always put it in a fridge for me . Just put it in a polythene bag then with your name on or clear bag so box is visible. Leave syringe in box sealed otherwise you will get problems at security in some countries I have found. If in box sealed they are fine . Carry it through & put it into the boxes they scan but mention it to staff & show letter. I had problems even on UK flights so was glad of letter I carry always . Haemotology told me it lasts 24 hrs out of a fridge if a crisis but I have been in remote areas in world & always find ice cube or ice lolly to put in cool bag. . Once you are confident you won’t give it a second thought. Before diagnosis I travelled regularly where no fridges sailing. Not only was I initially terrified to inject myself but also of travel with syringes. It is easy I assure you. Put your used syringes back into their boxes & the needles cover with the plastic cover it comes with. I then stick them back in my cool box.
If I find a friendly chemist when travelling I dispose of them there otherwise I bring them home. I never had a sharpie issued so I took them to my local chemist to dispose of. I had to beg to get a Sharpie 👌. Squeeze skin on stomach after putting ice on it you feel nothing . You can get ice anywhere & put it in plastic bag to freeze your skin.
Happy travels Julia. PS. If weekly gets too much speak to Haemotology they will adjust it don’t just put up with feeling like hell which I did without speaking out for 6 weeks 👌😂
Again thank you so much for your help Julia. I do get a copy of my haematologist’s letter to my doctor summarising what medication I’m to have after my haematology appointment. Will that letter be ok to produce at the airport? Thanks Irene
Traveling with PEG is easy. I use an insulated bag with a frozen gel pack. The mini-fridge in the hotel room is fine provided it cools to the required range. I have found that I need to put in a special request for a fridge at some hotels. The sharps bins are too large to travel with. I just wrap the used syringe up very well and bring it home for disposal or dispose of it while traveling when possible.
Note that Besremi comes with a warning to not permit the medication to go through the X-Ray scanner at airport security. Request a visual inspection. I have never seen that same warning for Pegasys, however. I travel with a written order for the Besremi just in case there are questions. I have only had to use it once.
Happy travels.
Thank you Hunter
Hi, I asked the same question a few weeks ago when attending the haematology clinic and the answer was it would be okay to do so to fit in with holidays, camping and anything else that could get in the way. I generally do not have any immediate side effects but my regular aches and pains have now reached a new level so now debating what to do, advice from Doc....it's up to you!
Hi Do you mean the Pegasys has caused your aches and pains to increase? Did that happen quickly? Really sorry to hear about that problem . Kind regards Irene
Hi Irene, yes muscle and bone pain is a side effect of Peg and it probably got worse about two months in. I am not jumping ship yet as my blood results are improving on it, Currently taking 45 mcg every two weeks and slowly reducing the hydroxy, follow up appointment every 8 weeks at present. How is the Peg journey going for you?
Hi I start in 3 weeks time which is why I have so many questions. My haematologist recommended that I stop the hydroxycarbemide and have a few weeks break and the start Pegasys 45 per week. Hope that’s not too large a dose. I do hope that your aches and pains improve .My best wishes Irene
Hi
Much valuable info been given already but thought I’d share my experiences in the hope they might assist.
I’ve had peg for years.
Started weekly at 90 & now on 45 every 4 weeks. The dosage was gradually dropped along with the time between injections being extended.
I never changed dosage time when I was weekly. When I switched to fortnightly I made the odd 24 hr change if I was going out or doing something special.
When I switched to every 3 weeks & latterly 4 weeks I sometimes alter the dose time but never by more than 2/3 days either side of the actual day due.
The side effects have been exactly the same for me at all dosage & frequency levels & last 1-2 days.
Hope all ok & happy to help you if I can moving forward.
Mark
Thank you Mark for replying. I’m sure I’ll have more questions and it’s great to know I can ask away! Kind regards Irene
Is it possible to get travel insurance with a diagnosis of Myleofibrosis?
Good day to you all ❤️
Hydroxy timing question
Dizzy/full head
