Biological therapy keeps me well, but I look like a cancer patient

[GabriellaFaith]

Apologies for the long post. Please do read though, I need help 🥺

I have Crohns, Hirradinitis (HS) , Raynouds and Arthritis.

5 Years ago the HS became so bad I had 33 trips to hospital in a year just for drains as well as 2 wwwks for surgery. My crohns was also becoming unmanageable and my joints hurt constantly. Add in 3 slipped discs all from a bad childbirth and 2 kids under 2 and I was really struggling.

I started on Infliximab. Absolutely life changing. Within just 24 hours I started feeling better. Within months my crohns was in remission. My HS settled and whilst I do get the odd flare, it's never so bad I can't self manage. It also seems to help the pain from my slipped discs - they think because the inflammation has reduced.

I also came off the steroids because I was well, and consequently lost weight and no longer have acne.

So! Sounds amazing. It is. And don't get me wrong, I am really really grateful for it. But there are unwanted side effects and I am hoping someone may be able to help reduce these as my consultant just brushes them off whenever I ask and my GP says to try eating healthy (despite my bloods being perfect, and the fact I'm a dietician, so that's kinda my thing 🙈😂)

My hair used to be really thick and past my waist. I was proud of it and it gave me confidence. It was the first thing my hubby commented on when we met. Over the last 3 years it has got thinner and thinner and breaking more and more quickly. It is now just shoulder length. Very thin. I have to style it right or my scalp shows at the sides. My eyelashes are nearly non existent and even my eyebrows are falling out. People keep telling me I should see a gp because I look really ill. They don't mean to be rude, they seem genuinely concerned. And I can see myself I look like I'm on chemo with this thin skin and thin hair. I've had to start sticking on eyelashes and drawing on eyebrows! I just feel really sad and ugly. I'm 38 and I look 80. The other side effects like always being cold and catching every sniffle going, I can perfectly accept. But this hair loss is really getting to me. I feel like I will be bald soon.

Any help at all gratefully received. Thank you in advance.

How’s your thyroid doing? I would suspect autoimmune thyroid disease (Hashimoto’s).

It was all perfectly normal. But thank you for the suggestion. I had bloods, stool sample, urine sample, I've pretty much had every test going this month and everything is good. I feel good physically. I just look awful!

How much are you eating? All of those symptoms also come from not eating enough calories. I’m wondering whether your body got used to the feeling of being on steroids and stopping the steroids has made your appetite go the other way….

Have you had vitamin d, folic acid and vitamin b checked? Not always done with standard bloods but often deficient, especially given Crohn's etc..

Could you also try another type of biologics that doesn't have the hair thinning side effects?

Don't let your consultant fob you off, this is a big deal for you.

Otherwise hair extensions would make your hair look thicker in the meantime.

I’m sorry to hear this OP, My OH is on Infliximab and has suffered significant hair thinning, despite a remission from severe IBD and it’s been great in every other way x

Yes, all within normal range. I'd thought similar tbh. I'm a dietician by background so I've been really careful with my diet and I've added in a multivitamin and mineral supplement and collagen. I don't smoke, don't drink, exercise, I'm a healthy weight, my only bad lifestyle thing is that ive had anxiety the last 9 years and when this flares up I can't sleep. Which could contribute to this, but the hair loss is getting gradually worse, and my anxiety can be fine for extended periods, it isn't a constant.

Thank you for sharing. Main thing is he is in remission ❤️ I think men can have a shaved head or go bald and it's more accepted by society (my hubby has little hair left, but he's still really good looking!) I don't mean that to sound like I don't empathise, I do. It stops you feeling yourself. I hope he stays well xxx

It's a good idea! And indeed, being off the steroids makes eating healthy fine, it was really really hard before! But I am not under eating. My weight is healthy and stable (I lost weight when I first came off the steroids but been good since). I have a good diet (albeit indulging in a bit too much of hubby's chocolate cake on my birthday!) I'm a dietician by background and with my hair I've been conscious of my food choices. But thank you so much for taking the time to make a suggestion x

Minoxidil and some of that eyelash serum?
havent tried them myself but considering it as mine has got very thin since premature menopause

I was taking mycophenolate and it caused me to lose a lot of hair(and what hair I did have was a really horrid texture). It has all come back now I have stopped taking it , and it makes such a difference to how I feel.

When people say you look ill can you not just explain it's a medication side effect?

I know it's rotten though. Before that I was on prednisolone that gave me huge weight gain and awful skin. And I hate how so many people judged me and looked down on me as they just saw a "fat person". It was eye opening in that sense.

Would you consider wigs? There are some quite lovely ones now. I know it feels like a huge step but if it makes it more bearable to be on the medication that makes such a difference it might be worth it ?

Thank you.

I asked my consultant about a different biologic thinking the same as you. He said there are others I could try, but they all have hair thinning as a side effect, and if I reacted badly to one, I probably would to all. He also thought it was risky given how ill I was before, as it takes a while to adjust to a new treatment and build up, and if it didn't work great, or even gave me more or worse side effects, I may not be able to go back as my body could react different after a break to the infliximab. He said for the crohns and the hs the infliximab is the best one of them all. I feel I'd be a bad mum if I risked getting ill again when my kids need me just for vanity.

As for hair extentions, any hairdressers on here with good advise or recommendations?! Mine said the glue in extentions would pull my hair out even quicker, so I looked at the DIY temporary halo hair as its on an 'invisible' string you wear a bit like a headband, but I haven't figured out how to get the string hidden great yet unless my hair is up in a bun brushed back so no parting meaning with careful placement I can hide it. I am planning to try more this weekend though, I only got them the other week.

Thanks so much for your help x

Definitely ordering to try! I've tried various shampoos like Plantur 39, but I haven't tried this, so fingers crossed! I might well be peri menopausal too as my mum started the menopause at 40 which is fast approaching!

Thank you x

Hey lovely, did you not get the side effects of infliximab explained to you? I’ve got colitis and I was meant to start it and refused it because of the side effects, it’s well known to cause severe hair loss everywhere and also putting you at high risk of catching everything and everything going. It sadly won’t stop while you’re on it j was told.

My hair is thinning a bit on top and I use one of those colour sprays that is meant to cover grey roots. I feel it helps just to colour the scalp a bit so it’s not so obvious. It depends how much your hair is thinning. I’m nearly 60 though and you’re much younger so in your shoes I might get a wig. I’m glad the drugs have made you better.

The other thing which it might be worth considering is whether short spiky hair would suit you? A new style might cover the thinning more, and short hair tends to be much better condition because it gets cut before it splits. There are some quite good apps where you can change your hairstyle to see how you would look…

I didn't really have much of a choice. I'd been in hospital 33 times in 1 year, several surgeries, constant pain, had used up all my sick leave at work, with 4 autoimmune conditions all out for control and the side effects of immunosuppression and steroids, to be honest I would have tried almost anything. And if I had the same choice again I would make the same decision. It has been life changing with all of my illnesses fully under control enabling me to work and more importantly be a good mum. I just look sick.

Gosh no this isn't very me 🤣 Thank you for the idea, but I'm used to hair down to my bum lol. I'm loving the Disney princess look lol. Definitely not a rock chic! I'll wear a, wig if I have too. It would just be nice to be comfortable in my own hair at night when it's just me and hubby.

Oh gosh bless you , I’ve been in 6 times this year with mine. It’s horrible isn’t it. It helps you in one way but gets you another way. I’ve started using biotin supplements and to be honest I feel like they’ve made a difference. Had my hair chopped into a long bob.

There are some amazing wigs out there now - I bumped into a friend I don’t see from one year to the next, exclaimed how amazing her haircut was and she whipped it off and said she was recovering from breast cancer. Would never in 100 yrs have guessed it was a wig. There are also permanent makeup routes for eyebrows, but not sure about eyelashes as I think you possibly need some eyelashes of your own to glue falsies on to. Hope you find a way to make yourself feel fab op.

Thank you x

I wish you better (or did you mean you've been in 6 times for biologic therapy to keep you well? If that's the case, I hope you stay well!!!)

Yes I might have to lie on the tattooing consent forms so someone will do my eyebrows, I guess I'm high risk for infection so no one will touch me 🙈

I am grateful for the medication, would just love to find a way to manage the hair loss better!

Hi OP. I have Crohn's and several other autoimmune conditions, and my hair has fallen out several times, you have my sympathy. I think other posters have already put forward the things that have thinned my hair, but I'll list them anyway.

Ferratin/anaemia
Vitamin D
Underactive thyroid
Perimenopause

It's also fallen out from what seemed like the shock of becoming ill. It's grown back eventually every time, but it's horrible while it's ongoing. There is an autoimmune hair loss condition called alopecia areata, but not sure how they would test for this.

I have seen these braids which might be good for hiding thin hair on top?

www.infinitybraids.com/products/lizzy-braid-velvet-rebel

I had chemo for breast cancer a few years ago. I did wear wigs for a while but only until my hair grew back. One of my cancer buddies at the time still wears her wigs as she loves them and is self conscious about her thin hair. She has lots in different colours and styles including some very cheap funky ones and other vert expensive ones. Personally I think she'd do better having it cropped but she sounds like you and won't hear of it.

I am the same with crohns. A few years back I did develop alopecia, very noticeable Almost overnight bald patches, worse one right on the back of my head, like a baldy man. Doc gave me steroids which started to burn and inflame after a couple of weeks. Went to a hair loss clinic who looked under microscope and said follicles were live so be patient. But another option is laser surgery where they stimulate hair growth?

now with the crohns my hair is dropping terrible, noticeable at the front so it looks like I’ve receded. I colour my hair with henna and use Alma powder which is very very good. Shampoo is simple, no scent and gentle on hair. Look up its pure website, there are a few powders that do actually help with the hair loss, condition of hair and volume. It’s worth a go. My hair always feels thicker after applying Amla