Pegasys side effects

[Lilliegarden]

Hi all

Started on Pegasys 11 weeks ago, at lowest dose of 45mg, suffered terribly with side effects for the first few weeks, fatigue, nausea, painful joints, itchy rash arms legs & palms of my hands.

Week 6 on Pegasys I caught a mild case of Covid & all my Pegasys side effects stopped immediately!

Telephone consult with consultant due to Covid & dose increased from 45mg to 90mg as my blood results had improved slightly but not vastly.

Week 7, 8 & 9 still no side effects whatsoever, so tentatively hoped my body had started to get used to the Pegasus.

Week 10 side effects gradually started creeping back in, now in week 11 & approx half the week I’ve felt fine, the other half pretty dodgy.

I’m usually really affected by the cold but have found now really affected by the heat in the past couple of weeks.

When I had my telephone consult, the consultant said if the side effects aren’t tolerable, the only option would be to switch to Hydroxy (which I’ve not had at all as yet)

I have another consultant appt next Monday.

My question is really, how long should I carry on giving the Pegasys a go before thinking about trying hydroxy?

I had bloods done today in anticipation of next weeks consultant appt so not sure whether the increased Pegasys dose has improved my bloods or not yet.

At the moment I really feel that my whole life has been taken over by these side effects & never know from one day to the next whether I’m going to feel ok or not.

Made worse by a reminder of 2.5 weeks of feeling really well & ‘normal’ when I had Covid!

Hard to know whether I need to suck it up & give it longer & it’s just me being impatient to get my life back!

[Hopetohelp]

I am on 65mcg and doing generally fine. Couldn’t tolerate 90mcg. Have been on peg for over 2 years. It can be slow acting so worth hanging on in there and if side effects are bad, try 65mcg. It took my figures a year to start coming down. The peg held them steady for the first year. Platelets stuck in the 700’s and haemo wanted me to increase dose as wanted quicker reaction. I explained that I recognised the risks and was happy to stick it out on 65mcg. I signed papers to add hydroxy with the peg and chickened out at the last minute. Not sure what my lovely haemo thought of me but she was understanding luckily. I would say that it depends on what your risk factor is and what your bloods are. When they were pushing me to increase dose and meds I looked at my blood results which were not far off what they were when I was told to watch and wait, taking aspirin only. If there was no urgency back then, why now? I think once you start peg they want to see quick results but that isn’t how it works for some of us. Your personal figures and your risk must be assessed individually. Worth a good long chat to your haemo. Let us know how you get on

[Lilliegarden in reply to Hopetohelp]

thank you!

[ainslie in reply to Hopetohelp]

good points in this post

[ainslie in reply to Hopetohelp]

some have to quit Inf because of sides, however my first impression is that increasing the dose to 90 after only 6 weeks when you already had sides at 45 was not a good idea.

You don’t say what MPN you have or what your counts are and if you have other health risks that necessitate bringing counts down quickly but it may be going slower is wise. See if your body and mind gets used to 45mcg and if counts still moving too slow increase by small amount even to 65 one week and 45 the next. Inf can take a while to lower counts for some but if there is no rush why rush. Our MPN’s are a marathon not a sprint.

If you can’t get used to 45 then time to move on to another med depending on your circumstances I suspect.

[Lilliegarden in reply to ainslie]

I have had issues with this consultant & his attitude/communication since he took over my case & I didn’t question the doubling of my dose as i was bit icky with covid & just didn’t think.

I have PV, no other health issues & my bloods prior to starting Pegasys I will attach as a screenshot if I can.

I made the assume as it’s a weekly jab it’s slow release & that it’s benefits would show (or not) over time rather than quickly. I just wasn’t sure how long the ‘over time’ should be.

My next appt is Monday coming so I will speak to him about reducing the dose back

[ainslie in reply to Lilliegarden]

sounds like a plan, if your Haem is concerning you if poss it’s a good idea to get a second opinion from a MPN expert who can write to your local Haem. I see a MPN expert every year or so to check my treatment is as good as it can be. Sometimes it will ruffle feathers with local Haem but your health should be the priority.

If you can’t tolerate Inf, there is also Rux. There is data now showing inf and Rux can have molecular benefits. I have PV, I am on Rux with no sides and doing well. Inf maybe better for molecular change if you can tolerate it though. I couldn’t tolerate Peg but many do very well on it.

[Lilliegarden in reply to ainslie]

Thank you

[Hopetohelp]

ps itching after bath went away while I had covid in March. How strange covid affected your symptoms in a similar way

[Yellowbike]

Hi Lilliegarden.

I went from 90 to 135 and now 180 mg in the course of a year.

All doses haven’t affected me much - guess I’m kinda lucky. I’ve dealt with a few minor things. Generally feeling a little bit off the day after injection. And my temperature control has been way off (feeling warm when cold and vice versa).

I’ve found that the minor side effect has subsided greatly.

I’ve also found that the more I think of potential side effects, the more I feel them. Could just be me, but of course there could also be a mental aspect of feeling side effects.

[Lilliegarden in reply to Yellowbike]

Hi

I thought that was me too until I started taking paracetamol to see if that helped any & it did.

I’m very careful to curb internal hysteria about every ache or funny feeling, at diagnosis I spent about 3 months in intermittent meltdown thinking every pain in my arm was a heart attack or stroke & had to have a stern word with myself.

I think it’s been most noticeable how much the side effects have been affecting me as they all went away when I had covid & I felt amazing, totally normal!

I’ll see about reducing the dose as on 45mg I did feel I was suffering fewer effects as time went on

[Arnoldthecat]

Hi. I can't comment on Interferon, i am starting on it Monday after 6 months on Hydroxy that hasn't worked. But what i have noticed, and not sure if it is the disease or the treatment, is that hot weather floors me. The hot weather we had a couple of weeks ago drained me completely, couldn't do anything.

[Lilliegarden in reply to Arnoldthecat]

Me too, usually I’m a cold fish & even in the past 12 months have needed to wear 2 layers even in very warm weather.

This past few weeks in the heat I’ve been totally useless but couldnt tell if it’s the meds, the condition or just the heat (never been affected like this before)

[Arnoldthecat in reply to Lilliegarden]

Just rubbish this disease isn't it.

[Lilliegarden in reply to Arnoldthecat]

Agreed 😫

[Exeter21]

Better to be on a low dose monthly & build up slowly when no side effects. Professor Harrison changed my dose of 45 to monthly & all my side effects went . Don’t give up it’s a good drug . Speak to MPN expert .

I came off it for 6 weeks then put on monthly it has worked. This is not a quick fix I have been experimenting on doseage for a year so far. However it’s the best move I made coming off HU which had horrendous side effects on me . Speak with an MPN they are the experts 👌

[Lilliegarden in reply to Exeter21]

Thank you!

I need to try & find an MPN specialist.

As it is we’re lucky to have any haemo consultants at all as they all bar one left last year & the dept has been running on locums since

[Solyesh]

Lillie - I can only speak of my personal case but it took about 6 months for my MPN specialist and I to get to the "right" level of Peg. Started too high (at 180 mcg/every 2 weeks) and negatively impacted my liver so dialed down to 90 mcg/2 weeks. It has taken time for the Peg to act (now a year at the same dose) but at my recent blood test my platelets were at best level in more than a decade (488). Perhaps you can speak with your doctor to see about maintaining at 65mcg for a while to see if both 1) your symptoms stabilize over time; and 2) allow time for the Peg to kick in.

Good Luck!

[Lilliegarden in reply to Solyesh]

Thank you 😊

[MAP44]

Hi Lilliegarden,

Sorry to hear of your troubles with Pegasys. Honestly I was on Pegasys for over 6 months before I really notice side effects lifting and all bloods dropping.

If you can handle the side effects I might give it a little longer. One day I just realized - hey I almost feel normal today! Slowly that happened all the time. I did have the crazy itch and cried and was going bananas but that too subsided. Still have the itch which is not crazy anymore just annoying and it lasts an hour or two instead of 20hours per day. I was not interested in HU and never being in the sun and NO besremi in Canada so my options were limited. Good luck ❤️

[Lilliegarden]

Thank you!

I will suggest to the consultant we give it a bit longer & ask to reduce the dose to see how we get on

[MAP44]

I started at 90mcg / week after 3 months I went to 135/week for a month and then to 180 /week for a month. During this time I still required a phlebotomy. Returned to 90/week after that month. Been on Pegasys for 18 months.

The 180mcg ( full syringe) for 4 weeks really knocked down the bloods. I have PV.

Some people have no issues with meds others have many and go slow and light to hopefully minimize the issues. Truly from my experience it was a matter of getting the reactions under control. High histamine and the itch is the biggest battle but at the beginning I was taking a Tylenol Arthritis pill which is stronger dose in the evening with shot and in the morning after the shot. This really seem to knock out the achy, heavy head feeling upon waking. Eventually that feeling left and no more Tylenol needed.( The itch another long adjustment phase but easier to deal with over time. ). The stronger Tylenol were recommended by the MPN specialist. She was correct they definitely helped. I don’t have any other issues so an extra Tylenol or two per week was no big deal and they helped so much. I also experienced insomnia for 1 night 3 days after the needle so I started the meds on Wednesday so I could be awake on the weekend night and sleep in extra when needed. Adjust as you must and let your body get use to the drug. My experience only!! Good luck, I hope you too just has a stubborn disease that eventually relents so you will feel better soon. 🦋😎

[MAP44]

Hi again. I just noticed your age. I was diagnosed with ET from a BMB at 52. Horrible experience, I felt like hell. This was all during the first lock down. Seen many specialist who had no patients so I was diagnosed quickly. At 54 I feel oh so normal and myself again. The ET turned out to be masked PV and when I got into an MPN Specialist things started to change for the better quickly. You will get there too.❤️