I am almost embarrassed to ask this but here goes. Since starting on Pegasys (have had 9th injection today given every 2 weeks 45mg until today upped to 67.5ish) I have noted my eyelid skin drooping over my eye to the point that it almost obscures full vision, my cheeks have sunken without weight loss and a mass of wrinkles has appeared all over. This is all new as my skin was pretty good up until just lately and the drooping eyelid thing was totally not there.
Though not earth shattering it nonetheless is pretty noticeable and among the long list of side effects wrinkled skin is last on the list of uncommon. Maybe just not reported, so I wondered if others have noticed it early on in treatment. Otherwise the drug is very tolerable for me so of course this is no game changer. Dose upped as platelets (ET Jak + 66yo) have been creeping in the wrong direction.
Thank goodness for masks. Other people's experience would be most welcome.
Here is hoping for a good summer.
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Planti
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This sounds very unlikely. The dosage is low and infrequent. Except it's some rare reaction (allergic maybe), taking into account eyelid swelling (especially if itching).
Hi Planti. Sorry to hear you are experiencing the skin problems. I am taking fifth injection today at 45 mcg and noticed the other day that the skin on the backs of my hands seems to have aged rather quickly. The face seems the same I think but certainly not better and when I look in the mirror I prefer not to these days😂. I drink a lot more water since on Pegysus as per instructions on leaflet. I hope you get some answers that may help
Hiya, good you are able to take the Pegasys, and yes I think the best thing would be to drink more water, very sensible. I thought I might try antihistamines too as it is tree pollen season and I have hay fever which might account for the eyes. Oh and of course that galloping old age.
Let me know if you find any miracle moisturizer, I am trying a new one.
Hi Planti, not very nice for you, see your GP about this to investigate why this is happening, it may not be caused by the Pegasys, so best to be sure, and then discuss with your haematologist. I hope you get it sorted out soon. Best wishes, Maz
Hi there, now you mentioned I connected the dots. Yes, I noticed my skin is changing much faster for worse though, but I did not think and connect with Pegasys. I am now seven and half years on Pegasys 135 mcg every three weeks. My facial skin got very fast worse when I was two and had years on Hu. Just thought to share with you so you are not alone. Wishing you well.
Aaagh and here I am excited at the possible thought of regaining my hair when I start Pegasys and come off hydroxi and anagrelide!!! I thought maybe it was a one off but now lots of negatives regarding skin ageing.
hi Planti, I have had the same thing after starting pegasys , ( eyelids, sunken cheeks etc)also skin on hands and arms has become thinner and wrinkled, ( other parts on the body as well but there is some more fat so not as obvious as in face and hands) I am on 45 mcg every four weeks now.
Yes the parts with less subcutaneous fat show it the most.
Were you ever on more frequent or higher doses of Pegasys? Is you current regimen maintaining your blood counts? My haem would like me under 400 for platelets and I am sitting just under 500. I read that some people come down with a higher dose then can lower the dose and maintain.
I think I will try what my mom did, and her skin was pretty good, olive oil topical. That way I don't have to worry if the dogs lick my face.
yes I was on 45 every three weeks , due to other side effects ( severe dyspepsia, acid reflux, huge reduction in saliva, eye and nose liquids) and too big a drop in my blood counts ( especially leukocytes) , we tried every 6 weeks ( too long this interval) now on 4 weeks to see how this goes. I am waiting for Besremi to be reimbursable in Holland, of course it is also an interferon but maybe the side effects I have will be less ( several people comment on suffering less side effects on Besremi)Other esthetic side effects of pegasys :hairloss and much thinner hair on scalp, vellus hair on almost whole of my face, I need to have my blood counts low, far under the upper limit: since I got unbearable tinnitus with platelets at 500 and htc 0.45.. as well as serious vision problems. Also my erythromelalgia gets worse as numbers inrease...there is a very clear correlation between my values and my symptoms..
I know there are many people who have far higher values and no symptoms at all..unfortunately that is not my case.I now go for htc under 0.42( preferably 0.40 )and platelets about 300/350.
I do everything I can regarding skincare, but it comes from inside and is not to be reversed ( unless you use fillers/ botox of course)
I use good sunscreen ( factor 50) once a day hydrating cream , no soap/ peelings or abrasive cremes/ or skin irritants, ventilate the house so the air does not get too dry, drink a lot of water, and I try not to look too much in the mirror....
I’m hoping to start pegasys in June. I’m currently on 17 hydroxi and 9 anagrelide a week. Hipe you don’t mind me asking but How does this compare to what you were on prior to pegasys? I quite like the idea of one injection a month. Is that the case with you?
Hi Wyebird. i was only on clopidogrel before pegasys, so Pegasys is my first cytoreduction medication. Yes, now I am on 45mgr once a month ( if this should prove too much I will try once every five weeks) I fortunately have never been on hydrea or anagrelide but it is definitely much better injecting once a month than taking these pills every day.. ( my opinion only...)
I’ve noticed my skin isn’t great since starting pegasys, I just assumed it was dehydration and it’s improved since I’ve been using better skincare.
Worth getting your eye checked out by the doc to be sure you’re not having an allergic reaction. If it’s purely cosmetic then a bit of Botox can work wonders! I have hooded eyes that were getting droopy (just genetics as pre-pegasys), a botox “brow lift” sorted it out.
Well, that is good to know that the hooding might be lifted with Botox. If it doesn't improve that might be an option though I live in a smaller center that might not have someone who is really good.
I am pretty sure that it is not an allergic reaction.
Will have to up my game with skin care and hydrating.
I’d love to know the better skincare brands your liking, for the first time I shelled out for something a bit more substantial than ‘natural’ products and I was sorely disappointed, my skin felt un-moisturised!I too have the genetic eyelids which have gone ultra south since diagnosis. Where did they put the Botox exactly, Sarah?
Not using anything fancy Magentas! “The Ordinary” do a range of really affordable actives (range from around €7-€15 for their serums).
I use their “Buffet” serum which is great for retaining moisture, trick is to apply to damp skin. Hyaluronic acid applied to dry skin will pull moisture from the skin and hold it on the surface, so it’s actually making your skin drier. Damp skin for the win! 😂
I follow that with a moisturiser, again keeping it simple, I’m using “The Ordinary Natural Moisturising Factors” in daytime (followed by sunscreen), and La Roche posay Cicaplast Baume B5 at night (also under €15). If I’m feeling super fancy or extra dry at night I might use a facial oil on top.
The other tip I picked up was to keep skin well exfoliated. Skincare sinks in so much better! I stay away from manual exfoliants (the gritty scrub type). Direct acid exfoliants are much gentler.
Got Botox on frown lines, crows feet & forehead. Put a little around my hairline and I’m pretty sure that’s what gives the brow lift effect. A good doctor will know the exact placement that will work for your face.
Hi Irish Sarah, I'm considering Botox as I feel my skin has aged considerably since being on Peg Interferon for the last three years. Is it ok to have Botox whilst on Peg Interferon and aspirin? Thanks
Looks like we’ll all be getting asked for ID when the bars reopen 😂. Obviously usual proviso of check with your doc applies - but my consultant said yes to botox on aspirin. I haven’t had it since starting peg, I’m booked in for a topup next month when things reopen here. Will double check with consultant at appointment next week if it’s ok.
Ha about the getting carded, if I ever went to a bar! Of course bars here are not like the pubs where you are which are homey and nice I hear.
That is interesting about the HAcid on damp skin. I have the one by the Ordinary people and it always rolls up when I apply my sunscreen after. And I have the LaRP Cicaplast and also the Toleraine sensitive cream which I have started to use in the daytime. I always had somewhat oily skin and never used moisturizers until lately and never ones that heavy in the daytime.
Will see if the HA stays put when I put on the sunscreen.
Oh, wow, thanks for all that, I love all those tips! It truly is global these days, The Ordinary is super popular here too (not purchased yet) and I love what you told me about the hyaluronic acid cause I‘d read about that recently while scanning somewhere but never followed through on finding out the answer, so cheers. Been using the hyaluronic for a while now too, I started off with that Japanese one Hado Lado or summat. And then my only other excursion other than the ‘natural’ moisturisers has been to purchase some olive base squalene oil for that darn pigmentation 😖.Was recomended La Roche the other day when I was in one of our chemist chain stores complaining about the dodgy product I bought there-made by some Australian pharmacist (John Plunkett), that old one 😉, so they gave me 3 samples from the Posay range 😃.
So many tips, I love it and especially the exfoliating one...I have some shopping to do,
Sounds like you got lots of good feedback already. Dry skin is listed as one of the possible side effects of Pegasys. Of course you already know about the risk of rash, pruritis, exfoliative dermatitis, and Stephens-Johnson Syndrome. If anything moved in the direction of the latter two AEs, then would certainly head in for care immediately.
I expect you are right. This may just be a more uncommon reaction to Pegasys, though dry skin could account for some of what you are describing. You might try one of the ceramide based creams as an option. Might help retain the skin moisture barrier.
I did see that there are some pretty drastic AE associated with this substance. Thankfully what I have is more of a nuisance.Have you any more thought of trying Pegasys while waiting for the approval of Besremi assuming that is going to happen?
I do like the ceramide creams too, my bathroom cabinet is getting pretty full of all the things I am trying. I will find something to stave things off.
Hope the extra water doesn't drive me to the poor house, water is very expensive here as it is metered, despite living in a rain forest. They chose to spend money on meters rather than improving the infrastructure to capture some of that plentiful commodity. Of course I am only semi joking, cost close to 600 Cdn for water for a one person household last year.
First world problems....
Hope you are well and feeling hopeful about some normalcy post vaccine. I had my first almost two weeks ago, second will be August or September if I am lucky.
Yes to considering Pegasys while waiting for Besremi. We will see what the MPN Specialist has to say on May 5.
Sorry to hear about the high cost of water in the middle of a rain forest. In the neighboring state of Maryland they have a rain tax. The more it rains, the higher your tax is. I live in West Virginia where we do not have such craziness. Lots of us have wells. We do not pay anyone for our water. We have lots of other issues, but expensive water is not one of them.
Geez that's not fair is it? From what Irish has said and others though it sounds remediable with some changes.
I agree with her that one doesn't need to go for the pricey things to get quality products.
Taking care of ourselves makes us feel better and is a welcome distraction from all the things we can't change. Canada is not coming out of this 3rd wave, people are dying and hospitals are filling up with Covid patients that are younger. Vaccine which is not produced here is not arriving fast enough to do much good at all. People are taking more risks than since the beginning and I don't want to think about it all day every day while I hide at home.
So here is to exfoliating and drinking water I say.
Oh, Planti, I just can’t imagine how all that never ending stress must be, I was done in after 6 months here in Aus, geez, we got lucky....I even think I have a bit of survivor guilt.
I have friends in the states and I know how it is sharing the country with so many ignorant and self gratifying people, you have my sincere sympathies.
Indeed, make yourself feel and look good that’s what us females are supposed to do, I was very glad you only said ‘almost‘ embarrassed.
Sounds so awful what’s happened to your skin and your features, I haven’t had a chance to read all the replies but I am sure, as you say, there’s some remedies in there (I shall be screen shooting and emailing myself Sahara’s reply for starters!) so best of luck, dear.
Nice to have some girl chat on this forum 😊....and how good is Hunter!?
Hi Planti,I'm on Pegasys, 180mcgs every week (not that its helping to reduce my platelets yet) and until your post I hadn't made the connection to how dry my skin (particularly on my face) has become. I have notice how my makeup quickly becomes flaky and I keep a facial spray moisturiser handy. My skin care routine is pretty good (cleanse, tone, moisturise every night and I use sun screen in my morning routine) and this hasn't changed. I also get pretty thirsty and always have a bottle of water with me. I have made a note to tell my Haematologist about it.
I hope you can get some help with the eyelid skin.
I have sort of given up on makeup since retiring as I live alone and I don't seem to scare the dogs, but even the tinted sunscreen is cracking up. Those spray things are nice though, a little drink for the skin.
I am taking antihistamines which seem to help somewhat with the eyes and it is nice to be able to breathe a little better too. I have tree pollen allergies and live in my own little forest so I am sure that is contributing to the puffiness that leads to the deflated eye folds. Never had it this badly before this spring. Maybe the Pegasys dries us out too.
I am hoping to skip the Botox and the knife for now as long as I can see.
Back to the water thing, I take my injection mid morning and later in the day get a slightly dry mouth which makes it very easy to drink loads of water. I wonder if I took the injection before bed if I would be able to drink as much water as I do presently. Since water helps rehydrate skin it might be worth a thought x
I've been injecting about noon and trying to drink water. But it seems to go straight through not stopping in my skin. Maybe it takes time to replenish?
Re, the water going straight through, salt is really important.... I guess the hard part is finding out how much is right for you. I had an MRI because of a visual impairment, this was before I got diagnosed and the doc from the Balance clinic told me she thought it was dehydration so I should drink eight glasses of water with 4 teaspoons of salt throughout the day, I think it was 4, maybe it was less but it was a lot , sorry can’t remember but most importantly I have BP on the low side. But depending...even if you have high blood pressure salt is definitely important.
Really interesting about your eyes and dehydration. Was is on the surface of your eyes? I have to ask my haem next time (not until late June) about having retinal exams as the information I have read indicates that retinal problems can arise with Pegasys and I already had a retinal TIA before starting any treatment and why I started treatment.
I do have high bp but very well controlled on ACE inhibitor. I am not worried about the salt thing, as my whole family growing up would be called salt-aholics (salt shaker moved around the table for the whole meal) and I still have an appetite for salty food. Not fast foods or junk but with the food I prepare I add a fair amount at the table. Kidneys have been checked out and are fine.
Glad that Aus is doing well with the virus, and thanks for the sympathy, I don't like to feel annoyed at the people who are not cautious and take it home to their families but I am. Sad when one hears stories about children having to be put into care because anyone who might take care of them is in hospital or can't take care of a child who is infected but only a little ill.
I am trying to meditate on kindness and gratitude as that, at least, is better for my soul.
I have been on Peg Interferon for nearly three years, prior to this Hydroxycarbamide for five years. I've recently noticed my skin seems to have aged rapidly on my face. Having had malignant melanoma in 2009 I have always stayed out of the sun and used factor 50. I get lots of side effects from Peg Interferon and after reading your post I wonder if this is also another side effect.
Sorry to hear that you have lots of SE from Pegasys. My dose just went up a bit (to 67.5) and I was a bit more tired and chilled the next day but thinking positive thoughts about getting over it. Besremi is not even in the approval process in Canada so no hope for anything better than this.
Maybe some of the suggestions from the kind people who seem to also have the dryness/aging problem will help as long as it doesn't break the bank.
Take care and yes, sunscreen is good. I think the non chemical ones are best, don't you?
My dose was always 90 weekly until recently, same dose now but fortnightly. I coped much better on Hydroxycarbamide but it stopped working and caused another skin cancer (BCC). I'm sure you are correct about the non chemical sunscreen and also some good advice on your post regarding skin issues.
I’ve not experienced anything like that in 6 years of being on Pegasys - just some dry skin and itching, including at times around my eyes but nothing as bad as you describe.
I am have been on Hydroxycarbamide for over ten years and at 64 my skin is as wrinkled as Mum’s was in her late eighties, and she loved being outside in her garden while I avoid the sun.
I drink plenty of fluid. I don’t use any chemical nasties like SLS on my skin. I don’t have an unhealthy low fat diet. I take multivitamins and extra Vitamin D.
I guess what the meds do to slow the abnormal multiplication of cells has an unavoidable effect on other dividing cells, like the skin. I wonder if my intestines are wrinkled too.
I wonder when wrinkles will become the 'in' thing to have, not in my lifetime I think.
I am 2 years on Pegasys now 45 mcg every 2 weeks. It has dropped my platelets nicely, and I feel really good. I have definitely noticed dryer skin, and of course the skin on my arms and hands has thinned. It is hard to tease out if it is aging or Pegasys. At 63 perhaps it is just aging. But I am a ginger, so we already have thin skin, that does not age so well.
I started using olive oil on my skin and it has helped quite a bit. Also, have to drink a lot of water.
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