Pegasus causing hair thinning

[Cityreach]

Hi, I was wondering if anyone has any tips on pegasus and hair thinning. I know it is a side effect from the medication,I have been taking it since Aug 23 and I am loosing lots of hair with every hair wash and brushing its coming out and also breaking off, I had appt at guys today where the consultant told me to try Biotin, can anyone recommend anything, is there any particular make that is better what dose does anyone suggest, is anyone also suffering with this thar can recommend anything. They did say low iron can also cause hair thinning so it could be one or the other or both any advice would be greatly appreciated x

[hunter5582]

I have experienced some hair loss due to venesection-induced iron deficiency. Going on the interferons and improved iron levels did help with this somewhat. More significantly, other iron deficiency symptoms such as cold intolerance, decreased energy levels and concentration have returned to normal with higher iron levels.

Suggest that if iron deficiency is the issue with the hair thinning that allowing the iron levels to come higher as the Pegasys controls the blood counts may work. If the Pegasys is the cause of the hair thinning, then a lower dose may help but not be viable from a treatment perspective. If this issue and other adverse effects persist, then perhaps a change in treatment plan (e.g., Jakavi) could be discussed with your treatment team. You may also want to speak with a dermatologist who specializes in hair loss about your options for other interventions.

Wishing you all the best.

[Cityreach in reply to hunter5582]

Thanks Hunter for your advice, I have thought about Jakavi as I suffer aquagenic puritas too which is a bit more under control than I have had in the past but still get it, I am relatively new to Peg and only on 45 every 2 weeks and coping quite well, it always worries me what additional side effects any changes in meds may bring. but I do wish for the day the itch goes completely and you can shower without dread. Thankyou

[russkatt in reply to Cityreach]

On that low a dose I don't think it can be the Peg causing hair thinning. That is practically nothing.

[Spanelmad]

I use viviscal, it gives you all the vitamins/minerals for hair.Have been taking for 6 months and have had no hair issues ,despite being allergic to Hu.I'm now taking peg 3 injections in.Use this product as its been through 7clinical trials and contains biotin,zinc,iron niacin.

[Cityreach in reply to Spanelmad]

Hi Spanelmad, thankyou for your reply, just had a look at that and see H&B do it and also do shampoo too, thanks for advice and hope your Peg journey gies well

[Spanelmad in reply to Cityreach]

Just to add it takes a while to work, depending on were your hair cycle is.I've never used the shampoo/conditioner and hair treatment but if it may work quicker using the lot.Good luck with the hair care

[Cityreach in reply to Spanelmad]

Thankyou x

[EPguy]

If your hair loss turns out to be directly from the Peg, that is an unusual amount to lose so quickly. You might want to ask Dr if any other less visible side effects are indicated by this.

If you do consider Jakafi (Rux) it has a side effect for some of reducing hair loss or even restoring hair. (but it also can restore weight) I have had both effects, which for me are good. As noted above it also can really help the itch for some.

[Cityreach in reply to EPguy]

Thanks EPguy the hair I would happily have restored any weight not so much lol I am not sure how keen they would be yo let me swop from Peg to Rux so soon but its worth a discussion thankyou have good day

[hall2]

I use a caffeine shampoo Alrepecin that helps.

[Cityreach in reply to hall2]

My mum actually suggested trying that but I didn't know if actually worked will look into it thanks have a good day

[SuET2017]

hi, I’m on peg 45 every two weeks, and have been on it for about 3 years. I’ve had hair loss since starting this treatment and have patchy thin spots across my scalp. It does seem to fall out and re-grow ie I’m not anywhere near bald. But always thin and patchy in certain areas. I haven’t tried anything particular but have just started a collagen supplement, I have no idea if that will help but I’ll let you know if it does.

[Cityreach in reply to SuET2017]

My daughter suggested collagen what brand do you take if you dont mind me asking, fingers crossed helps you

[SuET2017 in reply to Cityreach]

I am trying the Beauty Pie powder (are you in the U.K.? I get my cosmetics from Beauty Pie so have a subscription- makes it affordable). I know there’s lots on the market with differing strengths and results.

[Cityreach in reply to SuET2017]

Hi yes I am in UK never used beauty pie but have seen it advertised thankyou I will take a look , have a good day

[Carol0925]

Hi, I’m on 45 dose of Peg, just taken 4th injection and haven’t noticed any excessive hair falling, although it’s early days I know. I’m 66 so my hair is thinning anyway, but I started Biotin a couple of weeks ago as I worry mine will potentially progress. I also take Collagen. I will check out Viviscal too. Hope you find a solution. X

[Cityreach in reply to Carol0925]

Hi Carol, what brand of biotin and collegan do you take and what dosage of biotin please if you dont mind me asking, fingers crossed you get some benefits from it

[Carol0925 in reply to Cityreach]

Purolabs Biotin Complex 10,000ug. Ancient & Brave True Collagen, which really helps my joints.

[Cityreach in reply to Carol0925]

Thankyou x

[KC63]

Hi I started peg in March 90mg a week and hair thinning since. At my appointment yesterday with consultant he said peg, anaemia and thyroid issues all contributing. I started using John Frieda profiler which has Biotin and Hyaluronic Acid. Some days think it's helping as not as much hair loss. Might need to give it more time...Best wishes

[Cityreach in reply to KC63]

Thanks for that info I will look into that, I suppose there is no quick fix just perservance and hope of benefits Thankyou have a lovely day

[Lasbrisas1 in reply to KC63]

Do not use any Shampoo with Sodium LAURYL SULPHATE, it causes loss of hair, look at men today most are bald....no mouthwash or SLS IN TOOTHPASTE TOO...❤

[Exeter21]

I have been on Peg 2 years . 45 weekly at beginning & my hair that is long became dry & fell out lots . However I discussed with my MPN & we reduced to 45 monthly. The hair stopped falling & now lots growing back . Use gentle shampoo etc no sulphate & get a soft massage brush to use on scalp it help hair follicles . Julia . 👍

[Cityreach in reply to Exeter21]

Thanks Julia that sounds exactly like mine ,my hair is now very dry and kerps breaking off with brushing too, I have changed to a sulphate free shampoo but if I am honest I am not keen on it could be just the brand I am using and will try another brand to see if any better thanks for your advice x

[Lasbrisas1 in reply to Cityreach]

What Shampoo are you using now, I was using Dove Baby, however, cant find it now...Cherilyn.

[Cityreach in reply to Lasbrisas1]

I have just tried OGX nouishing, hydrating ,sulphate free but I wouldnt recommend. I may try viviscal now which has been recommend on here as shampoo and another recommended the viviscal supplements so may def give the shampoo and conditioner a try.

[Wyebird in reply to Lasbrisas1]

Hi, I use coconut oil. Rub loads all over head and place shower cap over it for 1/2 hr then was as normal.

[Na56 in reply to Exeter21]

Hi Can I ask how long it took to I’m reduce your platelets when the Pegasys was reduced to 45 monthly. I’m hoping to change from hydroxycarbemide to Peg soon but have already had quite a lot of hair thinning and I’m nervous of more if I’m on too high a dosage of Peg.

Thank you Irene

[Exeter21 in reply to Na56]

Yes I was on weekly for 12 weeks then onto monthly ever since . Takes a while for platelets to respond as it’s slower than hydroxy. But worth it , Give it a good year. Mine are now 350 on monthly & fluctuate up to 500 but I am happy at this . Feel very healthy. But contacting MPN was the best thing I did otherwise Haemotology were obsessed with platelets numbers rather than hair loss etc. Professor Claire Harrison has been brilliant . Julia 👍

[Na56 in reply to Exeter21]

That is great news. I’m seeing one of Prof Harrison’s team in February so I will suggest a monthly dosage to try and avoid more hair loss. As I’m on hydroxycarbemide I suppose that I’ll have to transition off that. Thank you for your reply. Kind regards Irene

[Exeter21 in reply to Na56]

Yes you will be fine once on Professor Harrison’s team such a wealth of knowledge. Hydroxy is what wrecked my hair . I was taken off it completely & left 3 months on no treatments then started on Peg. When on weekly doseage it was too strong for me as I felt exhausted. But once on monthly I was great full of energy & hair grew. It’s all a matter of getting dose correct for you & took a bit of experimenting then blood tests to see difference. I only have bloods checked every 12 weeks now, it used to be ever 6 but peg is low & slow to react so do not worry for immediate drop of platelets it’s all about quality of your life 👍 Good luck Julia .

[Lasbrisas1 in reply to Na56]

WHY ARE YOU SWITCHING MEDS TO PEG?

[Na56 in reply to Lasbrisas1]

Hello I’m interested in Pegasys because of the possible reduction in progression of my ET. Also I do not like the skin cancer risks of hydroxycarbemide which I’m on at the moment. I’m going to see a specialist at Guy’s in Feb to discuss.

Kind regards Irene

[light]

Hi, sorry to hear about your hair loss. I too am on Peg, 45mc every four weeks and have lots of hair loss. I use Viviscal and I tested for Iron and my thyroid (normal range). Wishing you well.

[Cityreach in reply to light]

Hi, yes I have just been tested for thyroid and magnesium and all fine I am iron deficienct due to having PV waiting on zinc to come back but guessing that will befine too. I did see viviscal was previously recommended as a supplement when I looked I saw they done shampoo and conditioner I saw holland and barrett done it, thankyou

[Lasbrisas1]

Eat Eggs Everyday and Mussels in Garlic, it may help

[Wyebird]

hi I have the same problem, I take biotin, minioxidil and finistrade. I’m spending g a fortune I even booked in for a hair transplant and got rejected.

I’ve also bought rosemary oil but haven’t used it yet.

Any improvement - no! I’m just clutching at straws. My hair thinned out a lot with hydroxi then receded massively when on both whilst transitioning to just Peg.

I’m now on injections only every 28 days. Still hoping but how much is it drug and how much age and genes I’m 68 and my mum’s hair thinned and receded enormously when she was in her 70s x

[Cityreach in reply to Wyebird]

Sorry to hear what your through too it makes you wonder will anything actually work! but its probably a long game with no quick fixes, its disheartening and annoying its happening

[Lilliegarden]

Thanks for posting, the other members suggestions are really helpful to me too.

I stopped Peg & moved onto Hydroxy but still my hair continues to fall out!

Thankfully I had loads of thick hair to begin with but drives me mad & is everywhere.

[Cityreach in reply to Lilliegarden]

Sorry to hear you going through same thing too, luckily I have thick hair too and do not colour it either so has always been in good condition now it feels dry and breaks so easily too , I feel like I have all these short strands around crown of my head that don't lay down

[Wyebird in reply to Cityreach]

Coconut oil is fantastic for dry hair

[russkatt]

I use minoxidil daily and that seems to help. What is your dosage of Peg? I am taking 105mcgs weekly.

[Cityreach in reply to russkatt]

Hi Russkat, I am on much lower than you I am on 45mcg fortnightly began in Aug so still relatively new, hope its working well for you

[AndyT]

I’ve been on Pegasys over 8 years and not experienced any hair thinning but in fairness my hair was fairly thin already!

[Island-Lady]

you asked about collagen brands and I am in the US so I’m not sure if this is available there but a good brand that I use is called Great Lakes collagen. It is a very high-quality collagen.

[Cityreach in reply to Island-Lady]

Thank you , I will have a look into that to see if avail in UK

[Lasbrisas1]

If you wash your hair in Bicarbonate of Soda, your hair will definitely look thicker, plus, no SODIUM LAURYL SULPHATE, I'm all for Alternative Medicine,

Good Luck.

[Cityreach in reply to Lasbrisas1]

Thankyou for the tip x