Limited UK Treatment

[darkraven]

Hi there, compared to other countries such as France, Ireland, Brazil, America etc, we seem completely limited in treatment choices. Doctors seem so reluctant to try anything new or ‘off label’. I would even sign a waiver if they were that concerned about adverse reactions or being sued!

My history is having AU twice. At 19 with full remission after a few months of minoxidil. I then had at 23. I initially had it treated with scalp clobetasol and minoxidil, but it kept falling out and didn’t regrow after a year.

I went to one of the few specialists in the country (north of the UK, I won’t specify which city in case they google this) and was told to basically give up and accept my condition. This wasn’t done in person but by letter. I was told not to return to the hospital for any further treatment.

I was treated initially with DPCP contact sensitisation in which Boots lovingly personalised all the labels and jars in my name. The formula was clearly not aggressive enough, despite being adjusted twice. It did not have the painful ‘crawling under the skin’ effect that would compare to how aggressive my AU was in the first place, thereby not ‘distracting’ my body enough from attacking my hair. A few ‘baby’ hairs grew, but nothing major.

After this, I was immediately put on very low dose methotrexate. Being a ‘expert patient’ and having a year off work, I read the studies. The chances of this working would only be feasible if the methotrexate was dosed higher and combined with pulse steroids. I was refused the steroids, and told that I’d probably get cancer from them. Given how long the treatment is - roughly a year on steroids- this would unlikely cause damage? I thought it was another cue to get me to give up treatment and accept being 100% hairless. The low dose methotrexate alone produced a light scattering of white hair.

After the doctor letter, I gave up treatment (to the doctor’s relief) but have hoped for some medical breakthrough would manifest. 2 years ago I tried to enrol on the interleukin-2 therapy in Nice, France but I was told I was not eligible as it was a study funded by the French govt only. I was even told no to an offer of private treatment.

I tried a reputable Turkish doctor for tofacitinib but I was blocked because it needed to sign and be approved by the manufacturer as me having bone cancer. Off label for was forbidden! Countries like Turkey and Greece have known reputations of providing non addictive medicines if there is a genuine clinical need! I wouldn’t want an expensive cancer drug for the giggles!

I saw some before and after photos of ruxolitinib cream on eyebrows (Googled). Even if I had eyebrows, that would be enough for me. This is not available in the UK. I contacted a US compound pharmacy that makes this after reading it in forum. Yet I was still told by their staff they ‘never made this’. A cream would be quite economical but I’ve seen limited medical papers on developing this.

I know that Lilly and some of the other companies with ‘nib’ biologics are seeking fast-track. Every year I have with this condition, I feel is a year wasted. These existing biologics cost thousands, if you are even fortunate to get your hands on them. The kicker is that they don’t guarantee your Alopecia won’t return. Drug manufacturers are far too greedy. How about recoup your money by volume of patients?!

Life is terrible and I will never accept this condition. I am in my late 20s and I’ll probably never have children. I feel repulsive. It was the worse thing to ever happen to me as I am admittedly a very vain person. I’ve had therapy but no amount of rose tinted glasses will ever make me accept it. Women don’t want a smooth skinned man, let alone one with my admittedly fairly androgynous face, even before alopecia Alopecia.

With COVID, I highly doubt new treatment will accelerate. I am at a point now where I just feel like there is no hope. Being an artistic person, I can’t stand looking at someone who looks terminally ill every day in the mirror. I would not care about a reduced lifespan from treatment, as long as I have 20-30 years of good quality life. I’m currently just existing and not living. I don’t appreciate looks of ‘aww poor him’ in the slightest. It is a skin disease after all.

if anyone with AU knows of a good doctor that has tried any of the nib drugs in the UK, please Inbox me, or even if you have had success with conventional UK used treatments I’ve mentioned or not mentioned, let me know. If anyone has been offered ‘off-label in the UK, let me know.

I can’t bear the routine of being buried in glue, wig tape and hair that is not mine. Admittedly, I’ve become decent at doing it over the last 7 years. I’m currently ready for another sweaty summer with my poly eyebrows sliding all over my face like a Dali painting.

Sorry this is so long but if anyone with AU in the UK has had any support other than being ‘taken through the motions’, I’d be so grateful to know. Due to COVID, I’d be surprised to know if anyone has any active treatment ongoing. I’m willing to try anything as nothing is worse than feeling this way. There are nearly zero ongoing drug trials here!

Thanks guys,

- O

[Hidden]

Hi!

I know exactly how you feel, I would go abroad and get treatment. That's what I did and I have a full head of hair. I do get patches sometimes but as soon as I get them I fly out and get treatment. Portugal and Spain have state of the art Drs in this field. The downside is you have to pay out of pocket but I'd rather do that, than have no hair!

All the best!

[darkraven in reply to Hidden]

Hi, thanks for your reply. What treatment did you have?

[Hidden in reply to darkraven]

Hello,

I've taken steroids in conjuxtion with ointments and minoxidil. I've also had injection directly on my Scalp.

Hope that gives you an idea

[darkraven in reply to Hidden]

I’m glad you had positive results. We have scalp and oral steroids in the UK. It doesn’t really work for total hair loss.

Thanks for the response though, it is very much appreciated!

[Hidden in reply to darkraven]

Hey,

Yeah I know but the meds used outside of the UK are much stronger and very different. You can always get a second opinion outside the UK and see what they offer. They all speak English and offer online calls if you wish.

All the best x

[Billy2006]

Hi

I too have AU and sympathise, but please don't give up hope. Take it from a woman (and I would have said this before I had alopecia), but many women don't like their men hairy and find smooth skin very attractive.

I have only had AU for around 6 - 8 months and I am generally accepting of my condition and am coping with wearing wigs, but losing my eyelashes and eyebrows was the thing that really bothered and upset me. Like you, I just couldn't look in the mirror because what I saw looking back at me, just wasn't me. I just didn't look like a person at all.

I went private for treatment in the UK - with very limited success. At the start, I had enough regrowth after topical steroids and injections to go without a wig on holiday and in the gym, but 6 moths later it started to fall out and 3 -4 months after that I had lost everything. I was prescribed eye drops which I believe are licensed for glaucoma but I was not to use them as eyedrops but instead put them on eyelids and brows, rather than in my eyes. I also had microblading done to my brows. The drops have worked and although I could do with a few more, having lashes and hairs on my brows is fantastic. Yes, of course, I would love it if I wasn't bald, if there was a cure - or even if I knew what caused it. It's the whole uncertainty of not knowing why and what to do about it that is the most troubling aspect of the disease. If I have to live without hair, then so be it, but getting my features back has had a very positive impact. This small thing has made such a huge difference to my outlook. I feel human again.

I really hope that you find some success and start to feel better.

[darkraven in reply to Billy2006]

We’re the eyedrops lumigan? Aka bimatoprost? That sounds good. I don’t like gluing on my brows at all! Thank you for your supportive message!

[Billy2006]

Hi. My drops were Latanoprost. I think they have other brand names.

Yes, the eyebrows made such a difference.

Good luck and I hope you find something that works for you