Could Pegasys cause hair thinning?

Hi all, I was diagnosed with MF in January 2021. I have been on 45mg of Pegasys weekly since then. I have noticed just recently that my hair appears to be getting thinner and shedding. Wonder if this is a side effect or my age!! 65. Thanks

[Abrams]

hi I’ve been taking Peg since May. Unfortunately I too have noticed my hair is thinning badly. I did look it up and it can be a side effect of the drug. Though it says reversible. Whatever that means? It’s very distressing and I sympathise. We have reduced my drug to biweekly and I live in hope it helps. Would love to hear if someone out there has found a solution

[Hidden in reply to Abrams]

Thanks Abrams, yes any solutions would be most welcome.

[Exeter21 in reply to Abrams]

yes mine has been awful now thin & long never happened on Hydroxy but has on 4 injections of 45 dose Peg unfortunately. Currently stopped whilst on Peg break 👍

[Hidden in reply to Exeter21]

That's good news, hopefully will continue to improve

[Abrams in reply to Exeter21]

oh dear I can’t see a break in the near future so don’t know what to do. I had such lovely thick hair now thin, wiry horrible 😢what we need to know is what the drug does to cause it and could it be reversed by taking something to combat it

[Exeter21 in reply to Abrams]

I honestly think it’s the shock to the system that’s done it to me . Too high dose too frequent to start on . May work well on some & our bigger men but I weigh 60kgs & think weekly dose too frequent. Fortunately MPN consultant agreed. So now I am off it for 8 weeks my hair has stopped falling out. If you look at animals in NZealand when the earthquake hit Christchurch a few years ago , all the hair dropped off the cats dogs etc . I was there just after it happened & shock has strange effects on the system . I am extremely sensitive to anything & have to have all pure ingredients on my skin products or get a rash . The medical professionals have to get used to the fact we are not all the same. I often get told everyone copes well on Hydroxy but believe me I didn’t . Maybe you can have a break to see if improving. Mine was top of head & forehead worst . Julia 👍

[Abrams in reply to Exeter21]

I weigh the same as you it’s interesting that weight isn’t a factor when deciding on the dose we take. Reading other comments it’s obviously quite common on all drugs we are offered. My Consultant showed surprise saying it’s very rare!! I’m taking 90mg bi weekly would love a break. My platelets are 370 well in the normal range. No other results are and my liver is affected . I have an appt next week I need to discuss this. Lynn

[Exeter21 in reply to Abrams]

contact MPN consultant they are the experts that’s how my dose has come to be spaced out & only 45. One Haemotology Dr was going to start me on 90 but I refused as the dose to start I read was 45 . MPN Dr agreed with that . 👍

[Abrams in reply to Exeter21]

wish I had realised that I was told I was taking the smaller dose. What damage it has done 😔

[Exeter21 in reply to Abrams]

yes we don’t get informed much at diagnosis so I read up loads online on it otherwise I would still be feeling dreadful on Hydroxy. We have to also control our quality of life & unfortunately I only found the MPN Dr more concerned for that aspect of managing treatment . 👍

[Abrams in reply to Exeter21]

yes exactly. My Consultant is retiring so not sure what happens next. I’m off to Australia for 3 months wondering whether to tweak my medication myself. So fed with all the side effects. I felt fine before I took the drug even though my platelets were over 1000

[Exeter21 in reply to Abrams]

I will be on 45 per month instead of weekly . I think it’s all experimental on doseage on how it is effecting you . 3 months in Ozz will do your body wonders I am sorry not to be at my relatives there this year. Julia 👌

[Abrams in reply to Exeter21]

you have relatives. Where are they. It’s my daughter and grandchildren who live there in Sydney.

[Exeter21 in reply to Abrams]

My brother in law sister in law & my nieces & nephew’s live Sydney as my husbands brother left Exeter aged 20 married Ozzy girl & stayed forever . He now turned 70. Niece lives Drummoyne . Been many times there & all the way up to Cairns . Had lots of rain in Sydney this year but hopefully ok now. Yes interferon made my hair thin like mad in 4 weeks but now ok since temporarily off it 👍

[Abrams in reply to Exeter21]

I really want a break I want my hair back.

[ciye]

Mine thinned considerably in peg, as it was thin it was easy to notice, particularly in the back and sides. Reversible once off medication is for those taking it short term which is not us. Hair thinning is sadly a side effect of many of the meds we are offered.

[Hidden in reply to ciye]

Thanks Ciye, hopefully I won't loose it altogether!

[hunter5582]

Alopecia is one of the possible side effects of Pegasys. It might be temporary,.

rxlist.com/pegasys-side-eff...

drugs.com/sfx/pegasys-side-...

Hope it gets sorted out.

[Hidden in reply to hunter5582]

Thanks, interesting read, hopefully temporary, have been on 45mg since January 21. Platelets were 2000 at that time, now down to 600. Had bloods and telephone app on Wednesday . Consultant suggested 45mg/90mg alternative weeks. See how it goes.

[EPguy]

I've had thinning on both HU and Besremi. The HU was worse, made my hair permanently crunchy.

It is aggravating that so few drugs make more hair, only less.

[Hidden in reply to EPguy]

Thank you

[Hidden]

Thanks for sharing lm still very knew to Pegusus and on a very low dose and lost loads of hair to my hair brush very early on, quite a shock. So l stopped brushing and began combing and wearing my wooly hat now most days. My friend suggested washing hair in "rice soap" apparently supposed to help grow and thicken hair.Good luck and take care.

Adiewon

[Hidden in reply to Hidden]

Hi, that's worth a try, I'll have a look , thanks.

[HelixNebula]

Yes, can confirm, my hair started thinning a few months after starting Pegasys 90 mcg weekly. I've been on Pegasys for more than 1.5 years and my hair is still thinning noticeably more than before Pegasys. Still have a full head of hair though

[Hidden in reply to HelixNebula]

Thank you, that sounds encouraging.

[Emmyroos]

I am 43 and have been on Pegasys for about a year at 90mcg weekly. I've just really suddenly noticed how thin my hair looks and feels. I had my second baby at 40 and suffered the annoying "baby hair" loss mom's get to experience right after birth. Thought I was finally getting my hair back after my baby then Pegasys seems to be making it's mark now. 🫤

[Hidden in reply to Emmyroos]

Thanks for the reply, hopefully it will start to improve.

[Emmyroos in reply to Hidden]

Likewise! Take care!

[Jynx93]

Since starting to take Peg I have also had a lot of hair thinning. I had long thick hair but have really noticed how much is shedding when I brush and wash it. The only person that seems to have noticed is me. I have been on a low dose of 45mcg weekly for the last 18 months. I was told that it’s very unlikely that it will all fall out, not much consolation when it’s your hair

[Hidden in reply to Jynx93]

Exactly, no one else has noticed, you have been on Peg for a similar time as myself. I take an Omega, magnesium, and multi vit. My son is a nutritional therapist and has his own ethical supplement company, so advised these supplements. Let's hope we hang on to our locks! Take care

[Jynx93 in reply to Hidden]

hopefully 🤞