Have recently been losing quite a bit of hair in the shower, I would say about 3 x as much as usual when I wash my hair. My hair has always been quite fine, but when I get it cut it thickens up and is usually quite healthy for a few months. I had my hair cut up about 6 weeks ago and for the last 4 weeks it’s just coming out. After I clean up the hair in the shower, I find strands all over me, my clothes and my dressing table.
My platelets are still in normal range but I’m on Peginterferon about 2 1/2 years now, does anyone know if this is related, and if it is, is it condition or medication related?
I’m in a public facing role and don’t want to end up looking like I’m losing my hair, so want to fix this issue before it’s noticeable. At this point I’m ready to cut a pixie in and get a wig.
Anyone else in the same boat?
Hope you are all well.
Kerry
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Mackydee123
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Hi, hair thinning is listed as a temporary side effect of peg interferon ie it will stop when you stop taking that med. it is also listed as a side effect of Hydroxcarbamide
which I now take as peg didn’t help me. I use a shampoo that’s supposed to help but don’t know if it does. Sorry can’t be more helpful.
I thought it might be med related as around the same time (4 weeks ago) I started experiencing jab-night anxiety as well, the kind of restlessness you get when you start a new drug. Other than these 2 issues, I tolerate Peg very well and would be reluctant to swap drugs as Peg brought my platelets down from 1100 to 250 in around 6 months and has happily kept me there.
I tried using the Nioxin Hair Care System about a year ago to try and thicken up my fine hair, used if for about 6 months and gave up as it did nothing for me 🙄.
Guess, this is going to be somewhat permanent then if I plan on staying on Peg. I’ll bring it up at my next consultation and see what they say.
I have exactly the same problem but am only on EPO injections and Asprin. My platelets are 596 and Haemoglobin 113 (I have a crossover syndrome). High platelets and low Haemoglobin! I have a telephone consultation on Wed so will be bringing this up. My hair is naturally curly so still looks thick and longer than it’s ever been with the COVID restrictions. I decided this week I am getting it cut to see if it helps.
It’s so disconcerting seeing your hair disappear. I’m still at the stage where I have complete hair so most people are trying to be nice by saying it looks normal/nice, but you know yourself how it feels in your hands and when it’s thinning out.
I will chat with my consultant about it and see where to go from there. You can get referred on to a wig programme on NHS but I think you have to have lost around 50% of your hair to qualify. I personally don’t want to wait that long, I don’t want it to be noticeable, so I’m just going to go private I think.
So many people worldwide wear hair pieces and wigs just to change up their look, so hopefully it will be easy enough to transition to, without feeling down about it.
I let you know what my consultant says when I see them in November.
Hi Kerry, sorry you are experiencing hair loss, it is a troubling side effect of Peg. I first experienced noticeable hair loss, just as you describe, 4 months into treatment, then at 90mcg/week. It lasted some 9 months. The hair thinned and got frizzier, but no bald patches. I also used Nioxin shampoo and also Biotin supplement 10,000 mcg. Difficult to know what the effects of these were on the hair but I am sure the Biotin did something as my nails became much firmer! The hair loss then subsided when I reduced the dose to 45mcg/week, after about one year on 90mcg. Four years later, my dose was down to 45mcg every 3 weeks, but platelets went up a bit so I increased a few months ago to 45mcg every 2 weeks. Still a tiny dose but I have noticed the hair loss starting again... I will also bring it up with my consultant as it is odd that it is happening after 5 years on Peg and on a tiny dose. Maybe the hair is very sensitive to dose changes in some people. In the meantime I will start back on Biotin and will be asking to go back to injecting every 3 weeks. You could maybe try the same: Biotin and spacing out the injections or lowering the dose a little. Good luck and keep us posted on your progress. Susana xxx
It is strange to tolerate a drug for so long without issue to then develop a side effect. Honestly when it wasn’t affecting me I didn’t notice any posts about hair thinning/loss but now that it is affecting me, I’m seeing them everywhere!
I tried nioxin before, it didn’t work for me at all. I thought about biotin but it takes a while to kick in and I have less than 3 months before I’m back to work properly so I need to sort my head out quickly.
I only take 45mcg weekly and I have asked to go into a maintenance dose a couple of times but my consultant is if the view that it’s managing my platelets perfectly so doesn’t want to change that.
I think I’ve made my peace with it. I’m quite a pragmatic person, I’d rather be in control of the transition into hair pieces rather than have it thrust upon me when it’s obviously needed. I’m also quite the glass half full kind of girl, so if my hair has decided to leave me then so be it, I’ll get some nice wigs in and enjoy a good hair day every day 😆
Hi Kerry, I noticed the hair on the top of my head thinning, I have naturally thick hair so it was a shock to suddenly be able to see my scalp way too easily, I too tried Nioxin for about 6 months with no visible improvement. I started taking Biotin around 5 months ago and at my last hair appointment my hairdresser said I have lots of regrowth showing, so I'm keeping taking the Biotin!
That’s great news that the biotin is working for you. I don’t think my hair has 5 months left in it but I might actually start taking biotin alongside the hair pieces to see if it helps in the background.
My hair has become very feeble, I have oily skin/scalp and used to get 2 days out of my hair, dry shampoo on day 3 and then wash, my hair is so thin now that it’s oily by the end of the first day, dry shampoo on day 2 and by the end of day 2 it feels messy with the oil/powder combo.
It’s just such an effort to make it look respectable for such a short period of time.
Just had my eyebrows microbladed too as I’d lost so much hair there, I gotta say, the microblading was a game changer!! Love the results, instant eyebrows instead of drawing them in for 20 mins every morning.
I’m thinking instant hair might be the way ahead 😁
My eyebrows have not been affected much but I did lose lots of lower eyelashes....not happy, they were never long and thick anyway and one is halfway bald along my eye, beginning to come back very slowly. I may be 63 but still a little vain about my appearance.
There is a good product called Nourkin,It's available in Boots ,I can say honestly it worked for me. I might have the wrong spelling !Think it's also available on the web.Worth a try,so depressing when hair thins and gets dry on these Meds we endure.Good Luck to you....also I forgot to say,Argan oil massaged into hair also improves condition,you need the pure oil.
Hi Kerry, I'm not taking Interferon but I have experienced hair thinning. Stress makes my hair fall out more. So trying to avoid that is good idea all round haha. Also, I tried a number of things. Biotin like mentioned above is good. Also used Viviscal extra strength worked too but more expensive and takes time. I also use a more natural co-wash ( it a cleansing conditioner) this worked quite well too as you are only washing your hair once (rather than using a shampoo and conditioner) in the shower so less hair loss. Also, I tend to steer away from conditioners in the shower or only use in ends and use conditioning sprays as you get less loss that way too. I used to wash my hair every day and dont do that either anymore. Also make sure you are getting enough B vits, Zinc omega 3. BX
I keep looking at silk pillowcases but it seems you have to buy a really good one (expensive) to see results. There are so many out there, which to choose?
Have you been on any special new diet that would shock your body? That happened to me last year after going on a strict keto diet. At my 4th month, my already baby fine hair started falling out scaring me to death. It lasted close to 6 weeks and then stopped as suddenly as it started. I read that once the hair loss cycle gets triggered, nothing can stop it till it runs its course...usually 6 weeks. It was so scary while it lasted.
Yeah I do go keto from time to time, I find it very therapeutic and I’m very disciplined about taking vits and supps when I’m on it. I’ve never experienced hair thinning in keto although my friend has. I’ve been on a regular ‘lockdown’ diet for around 3 months now so don’t relate the two.
The fact that I’m also having further peg side effects that I haven’t had for around 2 years makes me suspect that my tolerance to it has waned some how.
To be fair, it’s not enough to make me rethink my meds, all in all I’m very happy on Peg, I’ll just have to learn to deal with this.
My hair also used to be quite thick but has thinned out considerably in the last 12 years since I’ve been on hydroxy. My regular hairdresser noticed it years ago. Now I only wash my hair once a week and I’ve very recently stopped blow-drying it. But I’m also 64 now and I believe with age, hair does start to thin out. I also agree that when my hair is shorter, it does look fuller.
Yeah my intention is to cut it short to help my hair out, but I’m deffo not going to suit the pixie cut 🙈. I’ll keep that for the house and wear my new hair out in the real world 😁
Hi - I've taken HU for three years w/o any hair loss problems. A little over a month ago I started on interferon and I've noticed a lot of hair loss when I wash my hair. I knew that was a side effect but was surprised it's shown up so fast. I appreciate all the different remedies offered here and will give them a try. I also asked my stylist about it and she suggested shorter hair (mine is shoulder length right now) because less weight could mean less loss and it is easier to add height, which distracts from/covers thin spots.
Following - I’m 4 months into weekly 90mg Peg and am noticing some consistent hair loss... it’s otherwise working brilliantly so I’m going to invest in some hair pieces and wigs. I’ve also started using a hair serum by The Ordinary which immediately calmed down my itchy, scabby scalp. It’s supposed to improve hair condition and growth too so 🤞🏽 Pragmatic is a great approach.
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