Peg Day

[JeniMac]

Hope every one is well

Tomorrow I start my new journey on Pegysas. I'm not worried about the injections but I'm a little worried about the side effects. Any shed light on their experiences

IE How long do they last

Best time to take it

Thanks

[ainslie]

start low ie max 45mcg and raise slowly ,some like paracetamol when taking shot initially in case any flu type symptoms in initial stages, I hope it goes well

[JeniMac in reply to ainslie]

Thank you x

[mother2britton]

I started peg about two months ago, I started with 45mcg/weekly and am now at 90mcg weekly. I have not had any side effects to mention although my platelets are not responding as I had hoped…yet. I hope all goes well for you.

[JeniMac in reply to mother2britton]

Thank you hope you get better results soon x

[Hopetohelp in reply to mother2britton]

it took a long time for peg to kick in with me, nearer a year? Kept figures steady though until it kicked in. For some it works a lot quicker. Hang on in there

[hunter5582]

My experience with Pegasys (and then Besremi) has been very positive. It has been more effective and easier to tolerate than hydroxyurea or phlebotomy-only. I have only had minor side effects. I have had some minor itching/rashes and mild lymphopenia (with borderline neutrophils). The itching is well controlled with Claritin.

The norm is to start PEG at 45mcg/week. Many tolerate this dose well. PEG does take time for most to be effective, though it only took 8 weeks for me. We are each different on how we respond.

All the best on the next stage in this journey.

[JeniMac]

Thank you. Hopefully I'll be OK although wouldn't mind the loss of appetite or lose weight x

[Cja1956]

I haven’t had any experience with this but I just wanted to wish you luck.

[JeniMac in reply to Cja1956]

Thank you x

[EPguy]

I'm on Besremi, but many effects are similar. A common effect initially is flu like symptoms. Similar to a vaccine this is a sign it's doing something. This usually improves over time.

But another symptom, fatigue and its relatives, can be more persistent. I have been affected by some new weakness. Another which your Dr should be watching carefully is liver. With regular CMP blood tests (metabolic) you will monitor these, especially ALT, AST. These longer term effects can be dose dependent so matching your required dose to need will be important.

On the weight, it can cause increase. I've made a small but permanent eating reduction which addressed it in my case.

With all that as I recently posted, I've had some decrease in Jak2 burden. It can sometimes stop or reverse marrow condition also. So it's good medicine, and I see you changed specialists, good move. But we can't be certain of any outcome of course.

[JeniMac in reply to EPguy]

Thank you. I changed consultant as I felt like I was going around in circles. My new consultant is very good and has probed more into my condition and feels it is changing to th MF. Can I ask how long you flu symptoms lasted and do you take your medication at night

Thank you x

[EPguy in reply to JeniMac]

Flu like was just the first dose, for maybe a day or so. 2nd dose it was nominal. So not so different from getting a vax.

For me this is/was way less a problem than malaise etc. But malaise I can't pin just on the IFN.

I take the Bes ~3PM on the 2 week interval. Its effects are changing and occurring through the full 2 week period. I usually get a honeymoon for two days after where I feel good.

I switched injection to Wed from Tues so it's after my usual Tues Dr appt. This way any dose change we discuss at Dr can happen the next day.

[Fremia7]

I have just taken my second shot, started on 45mcg per week.

First shot I got the flu like symptoms, I also experienced quite bad anxiety. The flu symptoms were bearable but I didn’t like the anxiety.

Second shot I took Friday 30th 11pm and first 48 hours nothing and then this morning mild flu symptoms. So far for this second shot hasn’t caused any anxiety symptoms so keeping my fingers crossed those were a one off.

I have started to keep a diary of side effects to refer back to.

I have been able to carry on normal life / exercise etc without any issue.

Good luck with your PEG journey

Matt

[JeniMac in reply to Fremia7]

Thank you. Get my first at 2 pm today. Hope you are feeling a little better x

[gilded]

Some 6 months ago I was prescribed Pegasys 90mcg per fortnight. I haven’t experienced any side effects apart from some itching that can be dealt with satisfactorily.

[joyfuljoyful123]

hi Jen,

There may be some bruising at the injection site. Also, some fatigue. I started with 67.5 dose for 4 weeks, 135mcg for 8 weeks then 180 mcg since then. I echo EPguy - watch the liver (AST and ALT) and maybe do some Baseline tests.

Understand that the red blood cells in our body have a lifespan of 4 months, so it’ll take that amount of time for the hematocrit to come down (ie new production will slow after interferon).

Take care.

[Hopetohelp]

Luckily I hardly know I have taken my injection for which I am very grateful. Drink lots of water. Don’t worry if you get a red patch on injection site. Mine lasts about 3 weeks. I also tell my body that the medication is coming and not to worry as it will do me good. Might sound daft but there is something going on in the unconscious that I feel helps. Good luck and let us know how you get on

[2212df]

I started last week too 30 mg per week for 4 weeks and continuing hydroxea as before. First injection no problem at all do fingers crossed can get off hydroxea soon. I was having lots of side effects before so hopefully there will be an improvement. Hope it goes well

[havashan]

I take Peg 45 mcg every other week. I started a a little over a year ago and my platelets have slowly come down from 860 to 415. The only symptom I have is a little dizziness after the injection. So, I inject at night before going to bed and take one Tylenol. By the next morning I feel fine.

[EPguy in reply to havashan]

I second the dizziness, i forgot to mention above. It's not a big issue, but is always there for hours after the shot.

[william-Indo]

Hi Jeni,

You could take the jab at night after meal is best time to reduce the side effect.

If you experience crack at the corner of the lips, take vitamin B2.

Hope you are well

[Solyesh]

I started on 180mcg/every 2 weeks and had no real side effects (after the first shot I did have mild flu like symptoms) - was on tis dose for a couple of months but then liver enzymes shot up (AST and ALT) so had to take a break from Peg for about 6 weeks. Re-started at 90mcg/every 2 weeks and had fluctuating liver readings (all other bloods responded quite well and quickly) - now at 90 mcg/every 17-18 days - still trying to hit the sweet spot of effective platelet and WBC control and acceptable live readings.

Overall have had a positive experience and Peg has been much easier for me to tolerate than HU

[Sam2022]

I started 45mcg/week for 2 weeks, then increase to 90mcg/week for another 2 weeks. then found ALT, AST increase and platelet drops. I was experimenting with 90mcg/2 week, then 75mcg/2 week and 75mcg/3 week now to stable my ALT and AST while plat # is in the range of 300. The only side-effects are heavy legs and cold ankles. Looks like nobody has the similar side-effects like me. Good luck with your journey of Pegasus.

[Grendall]

I am on 65mg Peg and take around 6pm and coming up to my 6th week. I appear to have had a few side effects of which I keep a diary now, I get the chills still, it’s been day after injection but this week was 2 days after and a fair bit longer than the other weeks 🤷‍♀️I am having some insomnia with it but noticing it’s starting the settle now, but JenMac I too have heavy legs and have done since started, thought it was just me there and still getting that now, my dizziness seems to be settling also and the fatigue is constant but I believe this to be my symptoms as well as side effects. My headaches as symptoms have been well controlled for a good 8 months now as I am on a beta blocker as classed as a migraine

Good luck everyone….

[MAP44]

I have been taking peg for 6 months and happy to say platelets are at 326. This is a quick diagram of my platelet count since just before diagnosis to now. Quite the run!

I started on 90mcg/week with no side effects. Went up to 135 and a few months later to 180 / week. I take the needle at night with a extra strength Tylenol and again in the morning another Tylenol no matter how I feel. I really have no issues with side effects, very lucky. I still had 2 phlebotomy during this 6 months.

Best of luck I was diagnosed ET with a BMB but quickly realized it was PV. Feel really good now.

Platelet reduction

[EPguy in reply to MAP44]

From your plot it seems the PEG got to your PLT quite quickly. That's neat.

How did you know it was PV rather than ET? I assume from the high reds. (HCT etc) I also have BMB indicating ET but a PV Dx.

I get occasional headaches from Bes. But I'm concerned about Tylenol since it can stress the liver as can IFN. But probably not a rational fear with reasonable doses if CMPs are ok.

[MAP44 in reply to EPguy]

I am lucky because no headaches but I had the migraine floaters. The aspirin took that and the sore tired leg feeling away a long time ago. I have the itch occasionally mostly before bed so I do some deep breathing and meditations on the FREE Insight Timer app. One of these days I will pay for the year but right now the free version is perfect. I recommend everyone check it out!!

The red blood began to run is correct. I get a phlebotomy every 2 or 3 months. At the beginning I had 1 every 3 weeks for 3 months. The varicose vein’s I had disappeared and my body and brain left so much better.

I am doing the 180 mcg dose weekly so that is more that most. Eventually it will go down but right I feel great. I have decided long ago to be only positive and grateful for all I have. It has made a difference.

I only use the Tylenol on the night of and the morning after. No issues with it so I will continue it. During the week I take Milk thistle pills just to counter act any negative liver issues. 🍻

App from App Store called Insight Timer. Wonderful free resource for everyone to use. ❤️

[EPguy in reply to MAP44]

You have something wonderfully positive right now, feeling great.

[Threelions]

About 3 years on peg.

In a nutshell;

1- take peg from fridge 30 mins before injection.

2- take injection 2-3 hours before you go to bed.

3-drink plenty of fluids (water/squash)

For me I take a couple of paracetamol just before going to bed.

I Usually feel ok the following day until mid afternoon. Keep drinking lots & early night with paracetamol & im usually ok from then on.