Forgot to ask

[Hollyhock11]

Janine again! I've started losing my hair on top, do any ladies have wigs and can you get them on the NHS?

[SnazzyD]

Oh the hair. After 5 months of Pred for GCA my hair started to fall out in clumps a week before I was supposed to be going on a cruise. I was looking rather moth eaten. I rushed out to buy a wig which cost me nearly £500 for a synthetic one. In the end it was so hot at my various holiday destinations that I went with the Mange Is The New Range look. Needless to say within a few days of the holiday it stopped and by the end of the two weeks I could see new hairs. It appears it was a one off shedding probably due to the stress of the condition (usually delayed in illness) and the will I won’t I make it on holiday buildup. I now have an expensive hairy ornament.

I was offered a wig on the NHS when I had chemo years back but it wasn’t great and the rain ran off it down my back, so I went bald. You could try getting one, but I don’t hold out much hope in these days of cutbacks, but I base that on no recent knowledge.

[SheffieldJane]

Have you seen your GP about this. You maybe able to get a referral to a dermatologist or you could consult a reputable Trichologist. I somehow doubt that today’s NHS would offer a decent wig on prescription. A trusted hairdresser may also be able to advise on solutions - mine would I know. My hair has thinned since getting PMR and my hairdresser has given me a clever cut that makes it look thicker. Is your hair loss related to this condition or the steroids? If so, you may find that it starts to improve over time. I know you asked a simple question about the availability of wigs on the NHS. But if I had this problem I would explore other possible solutions. Even a hairpiece. They used to be popular in the 60’s and I bet they are even cleverer now. Hope some of this is food for thought. Best wishes Jane.

[Pongo13 in reply to SheffieldJane]

When at my worst, when breathing was the most I could face in a day, I got my hairdresser to chop it all off! It takes no more than two mins to finger dry now. Also I got some great hats for summer at a festival, and currently have a selection of ski hats (I won't be skiing again.) for anyone favouring the bald look, my friend does henna especially for post chemo - I'm sure all henna artists will paint any part of the body. I've seen pics and the ladies look amazing.

[SheffieldJane]

What an inspiring post - full of happy colour!

[Hindags]

I started losing hair pretty quickly. My dermatologist said to try biotin and minoxidil. My bathroom floor made me want to cry. I stopped the minoxidil after a while and continued with the biotin. Around 9 mgs, about a year after diagnosis, the shedding slowed. Don’t know why. Just in time too, as I was about to go wig shopping. The regrowth is doing well. I got my best haircut in years last week.

For me it didn’t come out in patches, but was generally thinner all over, maybe a bit more at the back. I did a combover pulling hair from the front to the back with a barrette at the back to create an illusion of some fullness. Lol. .

It was distressing. But thankfully, from all I’ve read here, everyone gets regrowth sooner or later.

[Jamie345]

My hair is constantly falling out since the beginning I have started to use medebiotin recommended by one of ladies on the forum so I'm giving that a try ! I wanted to get a wig as well but a good one is very costly!! But I'll see how things go first, I don't want a full wig I'll get onto my granddaughters to hunt around for me! Extensions might be to uncomfortable or damaging so I'm told. I don't think NHS will provide especially as funds are st the worse they can be let me know how you get on

[Lynvan]

Hi janine, had the same problem with my hair and y nails grew very thin and flakey. Started taking skin nails & hair supplement , it takes a while but it works. I have the longest and strongest nails and hair ever. Good luck. Ps I checked with the doc, she thought it a Good idea.

[Mgt1234]

Hi JanineJ,

I decided to wear a wig after many years, as a result of people having conversations with me whilst looking at my lack of hair. My GP referred me to a Dermatologist who provided me with an NHS prescription to obtain a wig. In my area I can get 2 wigs a year. Each wig prescription costs me currently just over £70 a time. This is for a synthetic fibre wig. I don’t wear my wig around the home but just when I go out. I treat it like a hat. It does the job and stops people staring. Before I tried Nano fibres to fill in the gaps. My sister in law has just treated herself to a wig online for £23 in a sale. Ideal world also sell a range of Natural Image wigs which you can try and return if not happy, however, they don’t accept NHS prescriptions. Good luck whatever you decide.

Love

Margaret x

[Hollyhock11 in reply to Mgt1234]

Thanks everyone. I've got one large patch on top that's bald and will be working soon, so need to cover it. Will see if doc can help with a wig on NHS. Got fine hair so it shows up! Finding out Friday what I've got from blood results!

[Angelabur]

Hi I am new to pmr and on 15mg prednisolone my hair is thick and about shoulder length although I am 67 I have my roots done about every 5 weeks, this hair loss I am dreading struggling enough with pmr but losing my hair will be very hard to cope with, I started using P Shine Japanese manicure from available from E bay and Amazon, have always had weak nails but this has transformed them

[PMRpro Ambassador in reply to Angelabur]

Not everyone loses their hair - nor has other problems. Often hair loss can be due to the actual underlying cause of the symptoms we call PMR, and autoimmune disorder. And it will grow back...

[Stella3 in reply to PMRpro]

Not sure how to reply to everyone who has posted about losing hair. It has been very helpful and comforting to hear....so I want to thank you, some how losing hair (for me at any rate) as been very distressing. However as with everything one gets adjusted to each new thing, somewhat at least. I am going to start looking into hats and possibly wigs. I live in U.S.A. So not sure how to go about finding wigs but will look on line.

[PMRpro Ambassador in reply to Stella3]

My daughter just has thinnish hair - or rather, it is very fine. She uses wigs a lot for her hobby as a photo model - some she uses anytime and loves them to bits. And she is totally up front - she has a grey one that makes her look just like a younger version of me, dark ones, blonde ones for the ditsy blond days and a glorious red one...

[Hollyhock11 in reply to PMRpro]

Would you let your staff know you wore a wig? I can't wear mine for long, and definitely can't wear it all day yet, so may have to just have wispy hair and a patch on top?!

[PMRpro Ambassador in reply to Hollyhock11]

Mo Mowlan wore a wig when she had cancer - and would just chuck it onto the table if she got too hot... If it was good enough for her - it would be good enough for me.

[Hidden]

Hi Janine

I had some hair thinning due to the steroids/methotrexate, it was just recovering when I was diagnosed with breast cancer & l lost all my hair due to Chemo!

At my hospital they have a Charity which gives you a Voucher for your first wig so it’s not on the NHS, my wig(s) are synthetic as real hair would be too hot & during/after Chemo you might not be up to styling a real hair wig whereas synthetic ones are basically wash n go!

I’ve had 5 maybe 6 wigs in the last couple of years & my favourites are from the Raquel Welch Range, available on line.

My hair hasn’t really recovered from the Chemo blame Steroids & Methotrexate but I’m on a course of treatment by Philip Kingsley. I actually love my wigs & I’m always good to go 💁🏻‍♀️

If you want any more info send me a Private Message!

Don’t despair, wigs are so much better than they used to be.

Mrs N xx

[SusanEleven]

I bought a "topper" hairpiece. (I think they also call them "wiglets.")

I had lost so much on top that my scalp was glowing in the sunshine outside. It's very comfortable and not a full wig. It attaches easily and blends in with my existing hair. I'm in the US and paid $200. That price included the stylist cutting it to blend well with my existing cut.