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. 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 I have been hoping for some accessible medical breakthrough since 2016. 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 consulted with a reputable Turkish doctor for tofacitinib but I was blocked because it needed approval by the manufacturer - only people with bone cancer could go on the list. 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 as do a lot of you I’m sure. It is just unnecessarily traumatising. These existing biologics cost thousands. If you are ever fortunate to get your hands on them outside trials mainly in the US and Canada. 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 and not all in one go?
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 universalis.
With COVID, I highly doubt new treatment will accelerate under these ‘fast track’ initiatives. 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 a new 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. I just don’t get how scientists have discovered how to block much more rare disease mechanisms!
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. I’d also be interested if anyone had been offered the proper pulse steroid/methotrexate regimen or anything off-label.
I can’t bear my 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. It’s like I’m constructing a new face every day! 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, nothing is worse to me than feeling this way. There are nearly zero ongoing drug trials here!
Thanks guys,
- O
